Article Analysis 1

The interpretation of research in health care is essential to decision-making. By understanding research, health care providers can identify risk factors, trends, outcomes for treatment, health care costs, and best practices. To be effective in evaluating and interpreting research, the reader must first understand how to interpret the findings. You will practice article analysis in Topics 2, 3, and 5.

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On the three articles attached with this question, complete and fill an article analysis for each using the “Article Analysis” template attached with this question.

While APA style is not required for the body of this assignment, solid academic writing is expected, and documentation of sources should be presented using APA formatting guidelines.

Article Analysis 1

Article Citation and Permalink (APA format)

Article 1

Article

Article 3

Point

Description

Broad Topic Area/Title

Identify Independent and Dependent Variables and Type of Data for the Variables

Population of Interest for the Study

Sample

Sampling Method

Descriptive Statistics (Mean, Median, Mode; Standard Deviation)

Identify examples of descriptive statistics in the article.

Inferential Statistics

Identify examples of inferential statistics in the article.

Article Analysis 1

Article Citation and Permalink (APA format)

Article 1

Article

Article 3

Point

Description

Broad Topic Area/Title

Identify Independent and Dependent Variables and Type of Data for the Variables

Population of Interest for the Study

Sample

Sampling Method

Descriptive Statistics (Mean, Median, Mode; Standard Deviation)

Identify examples of descriptive statistics in the article.

Inferential Statistics

Identify examples of inferential statistics in the article.

Article Analysis 1

Article Citation and Permalink (APA format)

Article 1

Article

Article 3

Point

Description

Broad Topic Area/Title

Identify Independent and Dependent Variables and Type of Data for the Variables

Population of Interest for the Study

Sample

Sampling Method

Descriptive Statistics (Mean, Median, Mode; Standard Deviation)

Identify examples of descriptive statistics in the article.

Inferential Statistics

Identify examples of inferential statistics in the article.

http://wjst.wu.ac.th Health Sciences

Walailak J Sci & Tech 2019; 16(12): 909-919.

An Integrative Literature Review of Basal-Bolus Insulin versus
Sliding-Scale Insulin for Glycemic Management in the Hospitalized
Non-Critically Ill Type 2 Diabetic Patient

Lindy HERR1 and Ladda THIAMWONG2,*

1Orlando Veterans Affairs Medical Center, Orlando, Florida, United States
2College of Nursing, University of Central Florida, United States

(*Corresponding author’s e-mail: ladda.thiamwong@ucf.edu)

Received: 22 May 2017, Revised: 11 February 2018, Accepted: 26 March 2018

Abstract

Diabetes is an increasingly common chronic disease that affects the body’s normal ability to control
blood glucose levels due to impaired use of the hormone insulin. It is estimated that one out of every 4
adults who are hospitalized also have a diagnosis of diabetes. Diabetic inpatients face unique challenges
in regards to managing their blood glucose while hospitalized due to the physiological stress of acute
illness. Unfortunately, those who experience inadequate blood glucose management in the hospital are at
an increased risk for poor patient outcomes, such as infection, increased length of stay, and death. There
are multiple medications used to regulate blood sugar levels; however, the most commonly prescribed
treatment for inpatients is the traditional sliding-scale regimen followed by the basal-bolus insulin
regimen. An integrated literature review was conducted to determine if basal-bolus insulin is more
effective than sliding-scale insulin in managing blood glucose levels of non-critically ill diabetic
inpatients. Four well-known databases were searched and 5 relevant quantitative research articles were
obtained and analyzed. The majority of the evidence supports basal-bolus insulin as the most effective
treatment for managing blood glucose and preventing hyperglycemia without increasing the risk for
hypoglycemia. Health care providers should order basal-bolus insulin accordingly in order to improve
patient outcomes. Future research that questions why sliding-scale insulin is still widely prescribed may
identify barriers related to ordering basal-bolus insulin and assist in decreasing related adverse events.

Keywords: Basal-bolus insulin, blood glucose, diabetes, glycemic control, inpatient, sliding-scale insulin

Introduction

Diabetes is a chronic condition that occurs when an individual is unable to properly produce or
utilize insulin, which leads to impaired regulation of blood glucose levels [1]. In 2017, diabetes affected
nearly 29.1 million people in the United States and approximately 1.4 million new cases have been
recognized every year across the country [1]. The pervasiveness of diabetes in the hospitalized population
is high, with an estimated 25 – 30 % of inpatients considered to have a known diagnosis of the disease [2].
Diabetics who are hospitalized for any condition affecting their health also require their diabetes to be
managed, which can be challenging considering the many factors that have the capability of promoting
abnormal blood glucose levels, such as certain medications, acute stress, or timing of insulin
administration [3]. Poor management of blood glucose levels may result in episodes of either
hyperglycemia or hypoglycemia, both of which place an individual at risk for various complications [4].
Evidence supports the fact that hospitalized patients with diabetes who experience poor glycemic control
are more likely to have a greater length of inpatient stay, high hospitalization costs, preventable
complications, elevated incidence of infection, and even increased mortality [4]. Current guidelines

Integrative Review of Glycemic Management Lindy HERR and Ladda THIAMWONG
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Walailak J Sci & Tech 2019; 16(12)

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suggest that the target blood glucose level associated with improved clinical outcomes for inpatients is
below 180 mg/dL and below 140 mg/dL for random and fasting blood glucose levels, respectively [2].
Managing a patient blood sugar in the hospital is most often achieved by using insulin therapy
[2]. The 2 main types of insulin therapy prescribed are the traditional sliding-scale regimen and the basal-
bolus regimen [5]. A sliding-scale insulin regimen consists of the administration of a dose of insulin
based upon pre-meal blood glucose levels; research examining solely the use of sliding-scale insulin has
shown that wide variations in glucose control may occur due to the nature of this type of regimen,
especially because it is considered to be a non-individualized reactive approach to treating hyperglycemia
[5]. Meanwhile, the basal-bolus approach provides long-acting insulin doses with bolus doses at mealtime
in an attempt to mimic normal insulin levels and potentially promote tighter glycemic control [5]. Limited
research has been published that compares the efficacy and safety between these 2 types of regimens [5].
The purpose of this review is to ascertain if the administration of basal-bolus insulin is more effective
than the use of traditional sliding-scale insulin in managing blood glucose and preventing episodes of
hyperglycemia or hypoglycemia in hospitalized adults with type 2 diabetes.

Materials and methods

In order to identify published material that examined the difference between basal-bolus insulin and
sliding-scale insulin on glycemic control among non-critically ill hospitalized diabetics a thorough review
of the literature was conducted. The 4 databases searched in January and February of 2017 were Cochrane
Central Register of Controlled Trials, CINAHL, Health Source: Nursing/Academic Edition, and
MEDLINE. The key words used in the search to retrieve relevant results were: (a) inpatient or
hospitalized; (b) diabetes, diabetic, type 2; (c) basal-bolus insulin; (d) sliding-scale insulin; (e) control or
management; and (f) hypoglycemia or hyperglycemia.

Results were refined to include those only written in the English language between the years 2005
and 2016. Articles that were listed multiple times in the search results were removed, and the remaining
articles were scanned to ensure they satisfied the topic of interest. Literature reviews that resulted from
the search were browsed to identify potential quantitative research articles that were not identified
initially. The inclusion criteria were any quantitative research article that investigated the effectiveness of
glycemic control as determined by a blood glucose sample among adult diabetic inpatients achieved by
receiving either a sliding-scale or basal-bolus insulin regimen. Articles were excluded if they: (a)
examined inpatients of long-term care facilities; (b) analyzed the use of intravenous insulin compared to
subcutaneous insulin; (c) evaluated glycemic control based on hemoglobin A1c level; or (d) used
computer-based programs instead of actual humans to compare insulin regimens on glycemic control. The
level of evidence for the articles chosen was determined based on a rating system by Melnyk and Fineout-
Overholt [6], which is presented in the form of a hierarchy of evidence for intervention questions.

Results and discussion

The search conducted on the aforementioned databases resulted in a total of 31 articles that
contained potentially useful information for determining whether basal-bolus insulin is superior to
sliding-scale insulin in adequately managing the glucose levels of diabetic inpatients. Of the 31 articles,
10 were identified as either systematic reviews or articles that provided guidelines on glucose
management, 8 articles were concerned with the use of computerized insulin clinical decision systems or
insulin order sets, and 9 did not fully address the topic of interest or meet the overall inclusion criteria; as
a result, 4 applicable articles were obtained. Skimming the systematic reviews for possible articles that fit
the search criteria but were not found in the originally searched databases led to the discovery of one
additional piece that was ultimately included in this paper. After the comprehensive literature review was
completed, a total of 5 quantitative research articles were identified and analyzed to gather information on
which insulin regimen allows for optimal glycemic management in the diabetic inpatient (see Table 1).

The articles included possessed quality evidence and met the criteria to be designated as level IV
evidence or better based on the rating system by Melnyk and Fineout-Overholt [6]. The occurrence of

Integrative Review of Glycemic Management Lindy HERR and Ladda THIAMWONG
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Walailak J Sci & Tech 2019; 16(12)

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hypoglycemia or hyperglycemic episodes, and the overall degree of blood glucose management were the
outcomes that were evaluated when comparing the use of basal-bolus and sliding-scale insulin to
determine which is more suitable for inpatient use.

Table 1 An integrative literature review of basal-bolus insulin versus sliding-scale insulin for glycemic
management in the hospitalized type 2 diabetic.

Citation

Design/
Methods/
Level of
Evidence

Sample/Setting
Major variables
studied and their

definitions
Intervention Measurement Data analysis and results

Appraisal:
Worth to
practice/

Limitations

Zaman et al.,
2014
[10]

Retrospective
case-control
study.

Level IV

Convenient sampling
method identified 338
cases of patients that
were admitted to the
University of Malaya
Medical Centre
between January 2008
– December 2012 with
diagnosis of
hyperglycemia.

338 cases divided into
2 groups based on
insulin regimen.
Basal-bolus insulin (n
= 159) Sliding-scale
insulin (n = 179).

Patients included in
sample if admitted to
general medical unit
and treated with
insulin only during
admission.

Independent variables
Sliding scale regimen =
Actrapid insulin

Basal-bolus regimen =
Actrapid and Insulatard
insulin

Dependent variables
Hyperglycemia = blood
glucose > 250 mg/dL

Glycemic control =
achieved when fasting
plasma glucose obtained
in the morning was < 126 mg/dL or when pre- meal plasma glucose obtained before meals was < 180 mg/dL Case of hypoglycemia = blood glucose < 70 mg/dL

No direct
intervention took
place, the charts of
338 patients were
retrospectively
reviewed and
grouped based on
the type of insulin
regimen they
receive while
admitted.

159 patients
admitted with
hyperglycemia
were treated with
basal-bolus insulin
(mean insulin dose
12.5, SD = 5.5
units)

179 patients were
treated with
sliding-scale
insulin (mean
insulin dose =
3.14, SD = 0.9
units/hr)

Type of insulin
administered was
not specified.

Glycemic control
was measured
between each of
the 2 insulin
regimen groups
based on their
fasting blood
glucose levels and
mean glucose
levels.

Measurements
were obtained
during treatment
according to the
American
Diabetes
Association
guidelines, no
specific
equipment listed
that was used to
obtain blood
glucose
measurement.

T-test evaluated
differences in
means between
continuous data,
which was
expressed as mean
± standard
deviation.

Basal-bolus
insulin group had
significantly lower
fasting blood
glucose and mean
glucose levels
Fasting blood
glucose:
Basal-bolus = 194
± 42 mg/dL
Sliding-scale =
210 ± 63 mg/dL
(p = 0.028)

Mean glucose:
Basal-bolus = 221
± 34 mg/dL
Sliding-scale =
230 ± 40 mg/dL
(p = 0.021)

Nonsignificant
difference between
basal-bolus and
sliding-scale
groups for
hypoglycemic
cases
(p = 0.186).

In order to
achieve glycemic
control in the
inpatient setting,
it may be best to
prescribe patients
basal-bolus
insulin regimens
and avoid sliding-
scale insulin.

Limitations:
No specific
device listed for
how data was
measured,
systematic error
may have resulted
in measurement
bias.

Cases were
obtained from one
geographical area,
may not provide
generalizable
results.

Umpierrez,
et al., 2007
[8]

Multicenter
randomized
control trial

Level II

A total of 130
nonsurgical inpatients
with an initial blood
glucose level of 140 –
400 mg/dL were
enrolled in this study.

Conducted at Grady
Memorial Hospital
and Jackson Memorial
Hospital.

Independent variables
Basal-bolus regimen =
glargine insulin and
lantus insulin

Sliding scale regimen =
regular insulin
administered with meals
based on treatment
protocol

Assigned
treatment protocol
was managed by
internal medicine
residents. Both
groups’ oral
antidiabetic
medications were
stopped.
Basal-bolus
regimen patients
received a total

Blood glucose
monitoring was
performed before
each meal and at
bedtime for
patients in both
insulin regimen
groups. If the
patient was
nothing by mouth
(n.p.o.) then blood
glucose

Repeated-
measures ANOVA
was used to
analyze change in
blood glucose with
a P value < 0.05 considered significant. Data was expressed as mean ± standard deviation or percentage.

No significant
differences in
mean age, race,
BMI, or
hemoglobin A1c
found between
treatment groups,
which suggests
results were not
influenced by
these confounding
variables.

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Citation
Design/
Methods/
Level of
Evidence
Sample/Setting
Major variables
studied and their
definitions
Intervention Measurement Data analysis and results
Appraisal:
Worth to
practice/
Limitations

Patients were
randomly assigned to
receive either sliding-
scale (n = 65) or
basal-bolus insulin (n
= 65).

The mean age of both
groups was 56 years;
the mean BMI of both
groups was equal at
32 kg/m2.

Dependent variables
Fasting glucose = pre-
meal blood glucose
measurement (mg/dL)

Random glucose =
measured blood glucose
(mg/dL) obtained at any
time during the day

Hypoglycemic episode
= blood glucose < 60 mg/dL, severe = < 40 mg/dL

daily insulin dose
of glargine and
glulisine based on
admission blood
glucose (0.4
units/kg for blood
glucose between
140 – 200 mg/dL
or 0.5 units/kg for
blood glucose
between 201 – 400
mg/dL). Half of
total daily dose
was given as
glargine, half was
divided into 3
doses to be given
as glulisine with
meals.

Sliding scale
insulin group
received a dose of
regular insulin 4
times a day based
on a protocol that
accounted for pre-
meal blood
glucose level.

monitoring was
performed every 6
h.

Blood glucose
was measured
using a glucose
meter by trained
staff.

Basal-bolus
treatment group
maintained
significantly lower
mean fasting
glucose, lower
mean random
glucose, and
overall lower
mean glucose
during admission.

Mean fasting
glucose
Sliding-scale =
165 ± 41 mg/dL
Basal-bolus = 147
± 36 md/dL
(p < 0.01). Mean random glucose Sliding-scale = 189 ± 42 mg/dL Basal-bolus = 164 ± 35 md/dL (p < 0.001). Mean glucose during admission Sliding-scale= 193 ± 54 mg/dL Basal-bolus = 166 ± 32 md/dL (p < 0.001). Basal-bolus group had 0.4 % of obtained glucose values considered hypoglycemic while sliding-scale group had 0.2 %. Statistical significance was not indicated. Neither groups had values < 40 mg/dL.

Basal-bolus
insulin may be
prescribed to
noncritically ill
type 2 diabetic
adults to manage
blood glucose
without placing
them at risk for
severe
hypoglycemia
Sliding scale
insulin may not
effectively
manage blood
glucose in
inpatients.

Limitations:
Patients without a
known history of
diabetes as well
as those that were
receiving
corticosteroids
were excluded,
which discounts
many hospitalized
diabetic patients.

The study did not
examine clinical
outcomes
between the 2
treatment groups.

Johnston, et
al., 2011
[5]

Retrospective
case-control
study.

Level IV

45 randomly selected
patient records from
the medical center at
University of North
Caroline Greensboro.
The patient records
were retrospectively
reviewed.

Sliding-scale only
group (n = 23)

Independent variables
Insulin regimen = either
sliding scale insulin or
basal-bolus insulin

Fasting blood glucose
(FBS) = blood glucose
collected between 4-7
am or before breakfast

No direct
intervention took
place, a
retrospective
review of 23
patient charts from
the sliding-scale
insulin group
revealed they
received a dose of
regular insulin

An electronic
chart
documentation
system was
reviewed; serial
blood glucose data
from the point-of-
care testing
database was
collected.

Chi-square
analysis used, data
was presented as
percentages.

302 (56 %) out of
total 540 CBGs
collected from
both groups were
classified as
hyperglycemic

Due to the fact
that both groups
experienced
hyperglycemic
events, and that
greater than 50 %
of the data were
hyperglycemic
readings it may be
necessary to
consider dosing

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Citation
Design/
Methods/
Level of
Evidence
Sample/Setting
Major variables
studied and their
definitions
Intervention Measurement Data analysis and results
Appraisal:
Worth to
practice/
Limitations

Basal plus correction
group (n = 22)

Mean age 55.6 years.

Dependent variables
Capillary blood glucose
(CBG) = sample
collected before meals
and at bedtime
Hypoglycemic event =
(CBG less than 60
mg/dL

Hyperglycemic event =
CBG greater than 180
mg/dL or fasting blood
glucose greater than 130
mg/dL

before meals
according to an
order set based on
their pre-meal
CBG.
Retrospective
review of 22
patient charts from
the basal plus
correction group
revealed they
received long-
acting insulin in
the morning along
with correction
insulin with meals.

Specific insulin
dosages for each
group were not
specified in the
article.

CBGs measured
before breakfast,
lunch, dinner, and
at bedtime were
examined over a
3-day period. In
total 540 CBGs
recorded and
analyzed as data.

events.

70 % of the total
CBG readings
from the basal-
bolus insulin
group were
hyperglycemic
events, while only
42 % of the total
CBGs from the
sliding scale group
were
hyperglycemic
events (p < 0.01). 4 hypoglycemic events occurred in sliding-scale only group (2 %), none occurred in the basal-bolus group. No significant difference noted.

insulin based on
carbohydrate
intake and
increasing dosing
regimen for
inpatients to
receive optimal
glycemic control.

Limitations:
Small sample
size, only 45
charts reviewed.
Inpatients were
also prescribed
oral antiglycemic
medications,
which may have
altered their CBG
or FBS in ways
that were not
accounted for by
insulin.
Unmeasured
variables such as
pre-existing
comorbidities or
level of stress
were not
accounted for.

Rymaszew-
ski and
Breakwell,
2013
[7]

Retrospective
case-control
study

Level IV

Chart review
conducted for patients
admitted to a general
medical floor at a
140-bed teaching
hospital in
Milwaukee, WI.

A sample of 128
charts reviewed, there
were 2 groups based
on insulin regimen.
Sliding-scale group (n
= 64)
Basal-bolus group (n
=64)

No significant
differences found on
sex, admission blood
glucose, or age (SSI
mean age = 65.2,
basal-bolus mean age
= 63.3).

Independent variables
Sliding scale insulin =
pre-meal insulin dose
administered based on
pre-meal blood glucose
level

Basal-bolus insulin =
long acting insulin
administered once or
twice a day along with
nutritional dose with
meals

Dependent variables
Fasting blood sugar =
glucose level tested
before each meal. Goal
< 140 mg/dL Hypoglycemia occurrence = blood glucose level < 70 mg/dL

No direct
intervention
occurred, a
retrospective chart
review was
conducted to study
the outcomes that
basal bolus insulin
compared to
sliding scale
insulin had on
fasting blood
glucose and mean
blood glucose.

The 64 patients in
the sliding scale
group had
received insulin
based on the
hospitals sliding
scale protocol (not
specifically
outlined in the
article).
The 64 patients in
the basal bolus
group received
insulin based on

Electronic health
records were
reviewed to obtain
blood glucose
data. Blood
glucose data
included fasting
and pre-meal
blood glucose
levels that were
acquired before
meals and at
bedtime. The data
were then
complied to
determine the
mean.

The article does
not specify the
type of equipment
used that obtained
the blood glucose
values.

Independent t-test
analyzed
continuous
variables, Mann
Whitney U test
analyzed
categorical data.
Equality of
variances not
assumed.

Fasting blood
glucose
significantly lower
with basal-bolus
insulin regimen.
Sliding-scale =
201.4 ± 33.7
mg/dL
Basal-bolus =
135.5 ± 29.9
mg/dL
t = 11.71 (70 %
CI: 60.03, 71.74) p
< 0.000 Mean blood glucose significantly lower in basal-bolus

Demographic
variables included
relevant data to
explain
occurrence of
hyperglycemia
and hypoglycemia
with ability of
being replicated.

Prescribing basal-
bolus regimen
may be superior
over sliding scale
insulin to
managing type 2
inpatients
diabetics blood
glucose
effectively
without
increasing their
risk for
hypoglycemia.

Limitations:
Sample largely
African American
due to location,

Integrative Review of Glycemic Management Lindy HERR and Ladda THIAMWONG
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Citation
Design/
Methods/
Level of
Evidence
Sample/Setting
Major variables
studied and their
definitions
Intervention Measurement Data analysis and results
Appraisal:
Worth to
practice/
Limitations

the hospitals
basal-bolus insulin
protocol (also not
specifically
outlined).

group
Sliding-scale =
225 ± 37.5 mg/dL
Basal-bolus = 149
± 23.1 mg/dL
t = 13.81 (70 %
CI: 70.25, 81.71)
p < 0.000 No significant difference between the 2 groups for hypoglycemia occurrence. Sliding-scale = 0.63 ± 0.13 Basal-bolus = 0.7 ± 0.13 t = -0.345 (70 % CI: -0.31, 0.16) p = 0.73

may not be
applicable to
other racial
categories.
Noncritical units
not included,
single center
study, results may
not be
generalizable.

Possibility of
glucose readings
being obtained at
inappropriate
times due to meal
delivery at the
hospital in the
study; true pre-
meal blood sugar
may not have
always been
measured.

Umpierrez,
et al., 2011
[9]

Multicenter
randomized
control trial

Level II

Patients > 18 years
old undergoing
surgery and not
requiring ICU care
were eligible.
Conducted at Grady
Memorial Hospital,
Emory University
Hospital and Veterans
Affairs Medical
Center in Atlanta,
GA.

Total 211 patients
enrolled and randomly
assigned to 2 groups.
Sliding-scale group (n
= 107).
Basal-bolus group
(n=104).

Clinical
characteristics such as
gender, race, age,
BMI and body weight
on admission between
the groups were found
to be nonsignificant.

Independent variables
Basal-bolus regimen =
insulins glargine and
glulisine
SSI regimen = Novolin
R, regular insulin

Dependent variables
Mean daily glucose
concentration = mean of
blood glucose readings
collected for the day,
goal was to maintain
between 100 – 140
mg/dL, readings higher
than goal considered
hyperglycemic.

Occurrence of
hypoglycemia
(mild = blood glucose < 70 mg/dL or severe = < 40 mg/dl).

Patients in the
basal-bolus
regimen received a
total daily dose of
0.5 units/kg of half
glargine once
daily and half
glulisine (divided
into 3 doses to
receive before
meal times).
Adjustments were
made to the total
daily dose based
on increased age
or increased
creatinine.

Patients in the
sliding scale
insulin group
received a dose of
regular insulin
(Novolin R)
before meals and
at bedtime if their
pre-meal/pre-
bedtime blood
glucose was > 140
mg/dL. Dose of
insulin was
increased
according to a
protocol (not
provided in the
article), where the

Mean daily blood
glucose
concentration was
measured for each
of the groups.
This value was
determined based
on blood glucose
levels that were
either randomly
obtained (at any
time during the
day) or obtained
before meals or
before bedtime.

Data collection
methods were the
same for both
groups, however
no specific
equipment stated.

Comparison with
baseline and
outcome variables
completed with
Wilcoxon and chi-
square tests, data
presented as mean
± standard
deviation and
percentages.

Mean daily
glucose
concentration
significantly lower
in basal-bolus
group.
SSI = 176 ± 44
mg/dL
Basal-bolus = 157
± 32 md/dL (p < 0.001) Fasting glucose levels significantly lower in basal bolus group. SSI = 165 ± 40 mg/dL Basal-bolus = 155 ± 37 mg/dL (p = 0.037) Mean of 53 % of patients from basal bolus group met goal to achieve

Estimated 104
subjects in each
group required to
achieve 90 %
power, this was
met.

Inpatients
prescribed basal-
bolus achieved
better blood
glucose control
and lower pre-
meal and bedtime
glucose levels
throughout the
day, suggesting
the efficacy of
prescribing a
basal-bolus
insulin regimen to
inpatients.
However, patients
receiving basal-
bolus may be at
an increased risk
for hypoglycemia.

Limitations:
Factors associated
with
hypoglycemic
events for this
population may
have been
reduced intake

Integrative Review of Glycemic Management Lindy HERR and Ladda THIAMWONG
http://wjst.wu.ac.th
Walailak J Sci & Tech 2019; 16(12)

915

Citation
Design/
Methods/
Level of
Evidence
Sample/Setting
Major variables
studied and their
definitions
Intervention Measurement Data analysis and results
Appraisal:
Worth to
practice/
Limitations

dose of insulin
corresponded with
blood glucose
readings.
Oral antidiabetic
medications were
discontinued for
both groups.

glucose reading < 140 mg/dL, while only 31 % met that goal from SSI group (p < 0.001). A significant difference in the occurrence of hypoglycemia found between the 2 groups. 23.1 % of patients in basal-bolus group experienced mild hypoglycemia compared to only 4.7 % of patients in SSI group (p < 0.001). No significant difference found for occurrence of severe hypoglycemia between groups.

from NPO status
for surgery, which
were not
accounted for.
The study
excluded patients
that had history of
hepatic disease,
severe renal
disease, or
hyperglycemic
crises, so not
applicable to all
patients.

Hypoglycemic episodes
All 5 articles examined the occurrence of hypoglycemia and the type of insulin regimen received by

the diabetic inpatient [5,7-10]. Data presented from 4 out of 5 articles found no significant difference for
the occurrence of mild to moderate hypoglycemia between sliding-scale and basal-bolus insulin groups
[5,7,8,10]. Of note, although no significant difference in the data was found for this outcome, the research
by Rymaszewski and Breakwell [7] showed the patients who received sliding-scale insulin had more
hypoglycemic episodes compared to the basal-bolus group and out of the 22 patients who received basal-
bolus insulin in the study by Johnston and Horn [5], none of them ever experienced hypoglycemia.

The only research that presented a significant difference for mild to moderate hypoglycemia was
conducted by Umpierrez et al. [9], in which 24 of the 104 patients in the basal-bolus group and only 5 of
the 107 patients in the sliding-scale group experienced hypoglycemia, resulting in an absolute risk
reduction of hypoglycemia to be 18 % in those receiving sliding-scale insulin compared to the basal-bolus
insulin group.

Hyperglycemic episodes
Two of the 5 articles reviewed specifically identified hyperglycemia as a measured outcome [5,8].

According to Johnston and Horn [5], hyperglycemia was defined as either a capillary blood glucose level
greater than 180 mg/dL or fasting blood glucose greater than 130 mg/dL while Umpierrez et al. [8],
designated hyperglycemia as any blood glucose level greater than 140 mg/dL. Both articles reported
statistically significant values, however the results from one study supported the use of sliding-scale
insulin for prevention of hyperglycemia, while the results of Umpierrez et al. [8], found basal-bolus
insulin to be more effective. Out of 276 total blood glucose samples obtained from the sliding-scale group
in the study conducted by Johnston and Horn [5], 117 were hyperglycemic while 185 out of 264 from the
basal-bolus group were classified as hyperglycemic. Meanwhile, 34 % of patients who received basal-

Integrative Review of Glycemic Management Lindy HERR and Ladda THIAMWONG
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Walailak J Sci & Tech 2019; 16(12)

916

bolus insulin had hyperglycemia compared to 62% of those in the sliding-scale group in the research by
Umpierrez et al. [8].

Glycemic management
The overall degree of blood glucose management based on the type of insulin administered was the

major outcome that was examined in all 5 research articles, which all had mentioned that inadequate
glycemic control is associated with poor patient outcomes [5,7-10]. Only one article found that patients
receiving sliding-scale insulin achieved better glycemic control than the basal-bolus group, based on the
data that depicted 41 % of the subjects in the basal-bolus group had daily blood glucose levels considered
inadequately controlled compared to only 19 % of those in the sliding-scale group [5].

The remaining 4 articles reviewed all reported that patients who received basal-bolus insulin
obtained significant improvement in glycemic control in comparison to those who were on a sliding-scale
regimen [7-10]. For example, the blood glucose level on the day of discharge was significantly lower for
patients receiving basal-bolus insulin in 2 studies, one of which reported a mean discharge blood glucose
level of 128 mg/dL in the basal-bolus group compared to a mean discharge blood glucose of almost
double or 244 mg/dL in the sliding-scale group [7,8]. Research by Umpierrez et al. [8] and Umpierrez et
al. [9] investigated the mean glucose during hospital stay as a measure of glycemic control and found that
the patients receiving sliding-scale insulin experienced significantly higher values than the basal-bolus
group. One study had even recognized that patients who had their insulin regimen changed from sliding-
scale to basal-bolus demonstrated a significant improvement in glycemic control during their stay and
found the mean difference in blood sugar measurements among the 2 types of therapy to be 27 mg/dL (p
< 0.01) [11].

Discussion
Based on the evidence found in the research articles analyzed, a basal-bolus insulin regimen is more

effective than the traditional sliding-scale regimen in managing blood glucose and preventing
hyperglycemic or hypoglycemic episodes in the type 2 diabetic inpatient. The results suggest that target
glycemic control is best achieved when patients are administered a long-acting insulin coupled with short-
acting insulin, as this type of regimen closely mimics the actions of a normal pancreas [11]. The findings
that sliding-scale insulin poorly controls blood glucose levels and is associated with hyperglycemia
reflects the results of other published articles [12,13]. For example, Clement et al. [11] reported various
concerns with the use of sliding-scale insulin due to the fact that this therapy treats high blood glucose
levels once they have already occurred and fails to actually prevent the undesirable outcome. The data
presented in this paper is similar to the data described by Christensen et al. [12] in a meta-analysis that
also found mean daily blood glucose levels in diabetic inpatients were significantly lower among those
who were receiving basal-bolus insulin compared to sliding scale insulin. In addition, Lee et al. [13]
conducted a systematic review of randomized controlled trials and identified a significantly higher
incidence of hyperglycemia among patients who were administered sliding-scale insulin compared to
basal-bolus insulin.

Hypoglycemic episodes are considered a major safety concern for patients receiving insulin;
however, the majority of the results indicate that patients receiving basal-bolus insulin are not at an
increased risk for hypoglycemia. These findings are consistent with the results reported by a systematic
review and meta-analysis that confirmed no significant difference for risk of severe hypoglycemia was
present among patients receiving sliding-scale insulin and basal-bolus insulin [11]. Although one research
article analyzed favored sliding-scale insulin for the prevention of hypoglycemia, this type of regimen has
been considered to cause drastic changes in glucose levels leading to a dangerous decrease in blood
glucose and a hypoglycemic event [11]. Overall, the efficacy and safety of basal-bolus insulin has been
demonstrated and the collected evidence suggests that this type of insulin regimen is superior to sliding-
scale in managing hospitalized adults with type 2 diabetes.

Integrative Review of Glycemic Management Lindy HERR and Ladda THIAMWONG
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Walailak J Sci & Tech 2019; 16(12)

917

Limitations of the evidence
Each of the 5 research articles acknowledged the presence of limitations in their study. Three of the

studies were retrospective in nature, which may be considered a limitation because the researchers only
had access to the data that was already recorded in the patients’ charts [5,7,10]. The applicability of the
results to critical care units may not be feasible, considering both Rymaszewski and Breakwell [7] and
Umpierrez et al. [9] excluded patients in their study who were cared for in the intensive care unit.

The presence of confounding variables may have led to misrepresentation of the results, as only
Zaman et al. [10] took into account the use of loop diuretics and corticosteroids which are both
medications commonly prescribed to inpatients that have the potential to alter blood glucose levels.
Another potential confounding variable that was not considered by any of the 5 articles was the degree of
physiologic stress each of the subjects was experiencing while hospitalized, which may have interfered
with blood glucose levels differently for participants from each of the 2 insulin groups [5,7-9].

A specific limitation of this integrated literature review would be the quantity of articles analyzed.
A total of only 5 research articles were obtained, which narrowed the amount of evidence that was
examined.

Conclusions and recommendations

The majority of the evidence supports basal-bolus insulin as the most effective treatment for
managing blood glucose and preventing hyperglycemia without increasing the risk for hypoglycemia.
Health care providers should order basal-bolus insulin accordingly in order to improve patient outcomes.

Recommendations
Practice
Due to the fact that a larger part of the evidence reports the basal-bolus insulin regimen promotes

better glycemic control without a significant concern for adverse events such as hypoglycemia, it is
logical to recommend to providers to avoid ordering sliding-scale insulin over basal-bolus insulin in the
diabetic inpatient. Ordering sets with a specific protocol for basal-bolus insulin may be utilized in the
inpatient setting to promote the use of this type of regimen.

It is also important to appreciate the fact that nursing may play a key role in the effective
management of blood glucose levels in the hospitalized type 2 diabetic patient. The nurse caring for the
patient should ideally recognize instances that precipitate abnormal blood glucose levels, such as when a
patient is nothing by mouth (NPO), and notify the provider of the potential need to adjust insulin
accordingly. Nursing should also monitor trends in the blood glucose levels throughout the day and act as
an advocate for patients receiving sliding-scale insulin with inadequate glycemic control by coordinating
with providers and pharmacists and requesting a basal-bolus insulin regimen.

Education
Despite the evidence that basal-bolus insulin offers better glycemic control in the inpatient setting,

sliding-scale insulin is still widely prescribed and administered more often to diabetic patients [7-9].
Therefore, healthcare providers may benefit from education that reviews the benefits of basal-bolus
insulin as well as the disadvantages of sliding-scale insulin. It has been suggested that sliding-scale
insulin is ordered among providers due to its convenience; however, the disadvantages of the practice
should be presented to providers in order to improve patient safety and care.

Hypoglycemia is a potential complication associated with strict glycemic control and has the
capacity to cause seizures, coma, or even death [5]. While only Umpierrez et al. [9], demonstrated that
patients receiving basal-bolus insulin were more likely to experience a hypoglycemic episode, it may be
valuable to provide an education review to nursing staff regarding the signs and symptoms of
hypoglycemia so that it is readily recognized to avoid further adverse events.

Integrative Review of Glycemic Management Lindy HERR and Ladda THIAMWONG
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Walailak J Sci & Tech 2019; 16(12)

918

Healthcare policy
The Joint Commission (TJC) offers an Inpatient Diabetes Certification Program for hospitals who

possess certain exceptional qualities such as written blood glucose monitoring protocols, education for
patients on diabetes self-management, and program champions for staff education [14]. Hospitals who are
certified are recognized to promote better patient outcomes and have the capabilities to meet the needs of
the patients by following the clinical practice recommendation put forth by the American Diabetes
Association [14]. Recently, the American Diabetes Association [15] published an article that strongly
discouraged the sole use of sliding-scale insulin for diabetic inpatients due to poor glycemic control and
increased rates of complications associated with its use. A recommendation to TJC would be to not offer
certification to hospitals who are not compliant with ordering basal-bolus insulin and who manage their
patients with sliding-scale insulin, as this practice is associated with ineffective blood glucose control and
poor patient outcomes.

Future research
Further research that includes patients receiving certain medications such as corticosteroids as well

as those with diagnoses that were excluded in the articles reviewed may be valuable. Not examining the
relationship between insulin regimens in populations such as those with renal failure, heart failure,
hepatic disease, or undergoing cardiac surgery suggests that these results are not applicable to a
considerable amount of patients.

Given the data that supports basal-bolus insulin is more effective than sliding-scale insulin in
managing blood glucose levels, it would be interesting to conduct further research on the barriers or
reasoning behind why providers do not order the basal-bolus insulin regimen more frequently. Umpierrez
et al. [8] reported that sliding-scale insulin is the insulin regimen of choice in acute care with less than
one-half of patients being prescribed basal-bolus insulin. Conducting research to determine why providers
choose the suboptimal treatment plan for managing blood glucose may allow researchers to address
potential misconceptions regarding the 2 types of insulin regimens and promote the use of basal-bolus
insulin.

References

[1] Centers for Disease Control and Prevention. Available at: https://www.cdc.gov/chronicdisease/
resources/publications/aag/diabetes.htm, accessed March 2017.

[2] AR Gosmanov. A practical and evidence-based approach to management of inpatient diabetes in
non-critically ill patients and special clinical populations. J. Clin. Transl. Endocrinol. 2016; 5, 1-6.

[3] V Magaji and JM Johnston. Inpatient management of hyperglycemia and diabetes. Clin. Diabetes
2011; 29, 3-9.

[4] JG Timmons, SG Cunningham, CA Sainsbury and GC Jones. Inpatient glycemic variability and
long-term mortality in hospitalized patients with type 2 diabetes. J. Diabetes Complications 2017;
31, 479-82.

[5] JA Johnston and ERV Horn. The effects of correction insulin and basal insulin on inpatient
glycemic control. Medsurg. Nurs. 2011; 20, 187-93.

[6] BM Melnyk and E Fineout-Overholt. Evidence-based Practice in Nursing & Healthcare: A Guide
to Best Practice. 3rd eds. Lippincott Williams & Wilkins, Philadelphia, 2015, p. 91-2.

[7] HL Rymaszewski and S Breakwell. A retrospective review of sliding scale vs. basal/bolus insulin
protocols. J. Nurs. Pract. 2013; 9, 214-8.

[8] GE Umpierrez, D Smiley, A Zisman, LM Prieto, A Palacio, M Ceron and R Mejia. Randomized
study of basal-bolus insulin therapy in the inpatient management of patients with type 2 diabetes
(RABBIT 2 trial). Diabetes Care 2007; 30, 2181-6.

[9] G Umpierrez, D Smiley, S Jacobs, L Peng, A Temponi, P Mulligan and M Rizzo. Randomized
study of basal-bolus insulin therapy in the inpatient management of patients with type 2 diabetes
undergoing general surgery (RABBIT 2 surgery). Diabetes Care 2011; 34, 256-61.

Integrative Review of Glycemic Management Lindy HERR and Ladda THIAMWONG
http://wjst.wu.ac.th
Walailak J Sci & Tech 2019; 16(12)

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[10] HH Zaman, V Permalu and SR Vethakkan. Sliding-scale versus basal-bolus insulin in the
management of severe or acute hyperglycemia in type 2 diabetes patients: A retrospective study.
Plos One 2014; 2014, e106505.

[11] S Clement, SS Braithwaite, MF Magee, A Ahmann, EP Smith, RG Schafer and IB Hirsh.
Management of diabetes and hyperglycemia in hospitals. Diabetes Care. 2004; 27, 553-591.

[12] MB Christensen, A Gotfredsen and K Norgaard. Efficacy of basal-bolus insulin regimens in the
inpatient management of non-critically ill patients with type 2 diabetes: A systematic review and
meta-analysis. Diabetes Metab. Res. Rev. 2017; 33, e2885.

[13] YY Lee, YM Lin, WJ Leu, MY Wu, JH Tseng, MT Hsu, CS Tsai, AT Hsieh and K Tam. Sliding-
scale insulin used for blood glucose control: A meta-analysis of randomized controlled trials.
Metab. Clin. Exp. 2015; 64, 1183-92.

[14] The Joint Commission. Available at: https://www.jointcommission.org/certification/
inpatient_diabetes.aspx, accessed March 2017.

[15] American Diabetes Association. Diabetes care in the hospital. Diabetes Care 2016; 39, 99-104.

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Australian Cri

tical Care

9 (2016) 5–1

Contents lists available at ScienceDirect

Australian Critical Care

j o u r n a l h o m e p a g e : w w w . e l s e v i e r . c o m / l o c a t e / a u c c

est nursing review paper

hat is the relationship between elements of ICU treatment and
emories after discharge in adult ICU survivors?

eanne M. Aitken PhD, RN a,b,c,∗,
aria I. Castillo PhD, RN a,b,

manda Ullman MAppSci, GCPICU, RN a,
sa Engström PhD, RN, CCN d,
athryn Cunningham PhD, MSc, MA (Honours) e,

anice Rattray PhD, MN, RGN, SCM f

School of Nursing & Midwifery & NHMRC Centre of Research Excellence in Nursing (NCREN), Centre for Health Practice Innovation, Menzies Health
nstitute Queensland, Griffith University, Australia
Intensive Care Unit, Princess Alexandra Hospital, Australia
School of Health Sciences, City University London, UK
Division of Nursing, Department of Health Science, Luleå University of Technology, Sweden
Population Health Sciences, Medical Research Institute, University of Dundee, UK
School of Nursing and Midwifery, University of Dundee, UK

t the conclusion of this article a Continuing Professional Development activity i

ttached

r t i c l e i n f o r m a t i o n

rticle history:
eceived 6 July 201

eceived in revised form
0 November 2015
ccepted 30 November 2015

eywords:
emory
elusion
sychological recovery
ritical care
vidence based nursing

a b s t r a c t

Objectives: Patients admitted to an intensive care unit (ICU) often experience distressing memories during
recovery that have been associated with poor psychological and cognitive outcomes. The aim of this
literature review was to synthesise the literature reporting on relationships between elements of ICU
treatment and memories after discharge in adult ICU survivors.
Review method used: Integrative review methods were used to systematically search, select, extract,
appraise and summarise current knowledge from the available research and identify gaps in the literature.
Data sources: The following electronic databases were systematically searched: PubMed, Ovid EMBASE,
EBSCOhost CINAHL, PsycINFO and Cochrane Central Register of Controlled Trials. Additional studies were
identified through searches of bibliographies. Original quantitative research articles written in English
that were published in peer-review journals were included.
Review methods: Data extracted from studies included authors, study aims, population, sample size and
characteristics, methods, ICU treatments, ICU memory definitions, data collection strategies and findings.
Study quality assessment was based on elements of the Critical Appraisal Skills Programme using the
checklists developed for randomised controlled trials and cohort studies.
Results: Fourteen articles containing data from 13 studies met the inclusion criteria and were included
in the final analysis. The relatively limited evidence about the association between elements of ICU
treatment and memories after ICU discharge suggest that deep sedation, corticoids and administration of
glucose 50% due to hypoglycaemia contribute to the development of delusional memories and amnesia

of ICU stay.
Conclusions: The body of literature on the relationship between elements of ICU treatment and memories
after ICU discharge is small and at its early stages. Larger studies using rigorous study design are needed
in order to evaluate the effects
of the ICU during recovery.

∗ Corresponding author. Tel.: +61 7 3176 7257.
E-mail address: l.aitken@griffith.edu.au (L.M. Aitken).

ttp://dx.doi.org/10.1016/j.aucc.2015.11.004
036-7314/© 2015 Australian College of Critical Care Nurses Ltd. Published by Elsevier Lt

of different elements of ICU treatment on the development of memories

dx.doi.org/10.1016/j.aucc.2015.11.004

http://www.sciencedirect.com/science/journal/10367314

http://www.elsevier.com/locate/jsams

http://crossmark.crossref.org/dialog/?doi=10.1016/j.aucc.2015.11.004&domain=pdf

mailto:l.aitken@griffith.edu.au

dx.doi.org/10.1016/j.aucc.2015.11.004

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L.M. Aitken et al. / Australi

. Introduction

Patients admitted to an intensive care unit (ICU) often experi-
nce distressing memories during recovery. Specifically, delusional,
actual and emotional memories are frequently reported.1–3 Delu-
ional memories correspond to the recall of unreal events such
s hallucinations, nightmares and paranoia, which have been
stimated to be present in about 20–48% of patients.3,4 Factual
emories are the recall of real events that occurred during patient’s

ntensive care treatment such as the presence of an endotra-
heal tube and mechanical ventilation; proportions of patients who
ecall factual memories vary significantly from 18% to 96%.1,2 Emo-
ional memories involve the recall of feelings such as anxiety, fear,
uffocation and pain and have been reported by highly variable pro-
ortions of patients, ranging from 9% to 88%.1,2,5,6 Lack of memory
f ICU events has also been reported in about 18–38% of patients.1,7

Memories of ICU treatment play a significant role in the devel-
pment of post-intensive care syndrome (PICS), a syndrome that is
haracterised by “new or worsening impairments in physical, cogni-
ive or mental health status arising after a critical illness and persisting
eyond acute care hospitalisation” (page 4).8 Memories are thought
o specifically affect the psychological and cognitive components
f recovery of ICU survivors.9,10 For instance, delusional and emo-
ional memories have been associated with the development of
ymptoms of anxiety, depression and posttraumatic stress after
CU discharge.11–17 The role of factual memories is unclear, with
hem being identified as protecting patients from anxiety and post-
raumatic stress symptoms in some cohorts,11 while in others
actual memories have been associated with poorer psychological
ealth during recovery.18 The number of distressing memories that
atients recall was identified as a significant factor for posttrau-
atic stress symptoms.6,16,19,20 The association between cognitive

unctioning and memories of the ICU has also been explored. An
mproved cognitive functioning after ICU discharge was found to be
ignificantly associated with having no recollections of the inten-
ive care experience.21

A range of elements of ICU treatment have been proposed as
ffecting psychological health, including the number and type of
emories of ICU. These elements of care have included specific cat-

gories of medications such as anti-inflammatory medications, for
xample hydrocortisone22–24 and sedation and analgesic agents,
or example midazolam and opioids.1,2,25 Further, a link between
he level of sedation and psychological health has been proposed,
lthough the evidence of that relationship remains unclear.26 Given
he potential influence of aspects of ICU treatment on memories,
nd the link between memories of ICU and PICS, it is appropriate to
xplore these links with a view to adapting our practice to improve
emories. A review addressing this topic could not be located in

he current literature. The aim of this literature review was to syn-
hesise the literature examining relationships between elements of
CU treatment and memories after discharge in adult ICU survivors.

. Method

Integrative review methods were used to systematically search,
elect, extract, appraise and synthesise the available research.27

.1. Eligibility criteria

Primary research articles were included in the review if they
easured the relationship between specific ICU treatments and

emories reported by adult ICU survivors. Studies were excluded

f they were not written in English. ICU treatments were defined as
nterventions administered to patients during admission to a criti-
al care unit, e.g. mechanical ventilation, use of invasive devices and

tical Care 29 (2016) 5–14

administration of medications. ICU memories were defined as per
the study authors, and included factual and delusional memories
of the survivors’ time in a critical care unit.11

2.2. Search methods

PubMed, Ovid EMBASE, EBSCOhost CINAHL, PsycINFO and
Cochrane Central Register of Controlled Trials were systematically
and independently searched in May 2015. Medical Subject Head-
ings (MeSH) were amnesia, memory, intensive care units, critical
care, critically ill, critical illness, and intensive care. Additional stud-
ies were identified through searches of bibliographies. Searches
were performed without year restrictions but were limited to
human studies. Titles and abstracts were scanned for relevance
and eligibility using the a priori eligibility criteria. The search
was undertaken by one author (AU) using search terms developed
by the review team. Selection of articles based on the inclusion
and exclusion criteria was completed by two authors (AU and
LMA) independently, with results compared and disagreements
discussed and resolved by the whole team.

2.3. Data extraction and quality appraisal

A data extraction form was developed by the study authors (AU
and LMA) and applied to each of the included studies. For each
paper the author, study objective, population, sample size and char-
acteristics, methods, ICU treatments, ICU memory definitions, data
collection strategies, findings and study quality were extracted by
study authors (MIC, AU, KC). Study quality assessment, includin

g
t

he elements of validity, significance and usefulness, was based
upon elements of the Critical Appraisal Skills Programme (CASP)
checklists relevant to each included study.28

2.4. Data synthesis

Data from the included studies were categorised and summari-
sed to product a coherent and logical summary across the different
categories of ICU treatment.

3. Results

Following database and bibliographic searching 2748 titles were
identified. This number was reduced to 1548 titles after dupli-
cates were removed (Fig. 1).29 The abstracts of these titles were
reviewed and 64 full text articles examined. A further 50 articles
were excluded because they did not focus on the review question,
with 14 articles (13 studies; one duplicate publication with some
additional results2,18) included in the synthesis of results. No meta-
analyses were able to be undertaken due to the diversity of designs,
interventions examined and instruments used to measure mem-
ories; this resulted in the absence of multiple studies examining
sufficiently similar questions to enable data to be combined.

Randomised controlled trials and cohort studies were the most
commonly used designs in the 13 included studies (Table 1). Sam-
ple sizes were highly variable, ranging from 11 to 313 participants.
Instruments used also varied widely and follow-up was conducted
between 3 days and 5 years after ICU discharge. Studies gener-
ally had variable levels of both bias and usefulness, with this latter
aspect often limited by small sample sizes (Table 2).

Sedation, both in regard to the agents used and the depth

of sedation, was the primary intensive care intervention exam-
ined in relation to memories after ICU and was the focus of eight
studies.1–3,17,18,30–33 Consequently, the most common theme that
was identified focused on sedation and analgesia. The effect of other

L.M. Aitken et al. / Australian Critical Care 29 (2016) 5–14 7

Table 1
Relationships between ICU treatment and memories of ICU survivors.

Author details Aim Participants and design Outcome measure Results Comments including
strengths and
limitations

Henderson et al.,
1994; Australia33

To assess the effects of
adding low dose
midazolam to
papaveretum on
memory recall and
duration of ventilation
in drug paralysed
post-operative patients

100 post-operative
patients; blinded RCT;
recall assessed just
prior to ICU discharge

Locally developed
‘experience’
questionnaire (no
validation)

No difference in recall in
regard to pain, noise,
anxiety, discomfort,
memory. Duration of
ventilation no different (25
vs. 26 h, p > 0.05).

No control of other
aspects of care; asked
patients to recall
‘period of drug
paralysis’ so their recall
might relate to any
period of ICU care;
conducted in a time
where routine
paralysis was common
and therefore not
relevant to the current
practice environment.

Capuzzo et al.
2001; Italy1

To investigate the
relationship between
analgesia, sedation and
memory of intensive
care

152 ICU patients with
LOS > 24 h; prospective
cohort study with
follow-up 6 months
after hospital discharge
in 1 hospital

Structured interview to
assess memories
(factual, sensation and
emotional) based on
the ICU-MT.
Quality of life (locally
developed instrument)

No significant difference in
the incidence of factual,
sensation and emotional
memories between the 3
sedation groups (Group A:
no morphine/0–2 doses
benzodiazepines; Group B:
morphine without other
sedatives; Group C:
morphine and other
sedatives). Although
bivariate analysis indicated
patients reporting at least
1 emotional memory were
more likely to be female,
emergency admission,
have infection/sepsis and
receive corticosteroids,
only gender was significant
in logistic regression.

48 eligible patients not
interviewed due to
loss-to-follow-up (36),
terminally ill (4) and
cognitive impairment
(8)–non-participants
were more likely to be
post-surgery with a
longer ICU and hospital
LOS; convenience
sampling used for
recruitment in single
centre.

Kress et al. 2003,
USA31

To search for evidence
that daily interruption
of sedation was
associated with
long-term
psychological harm.

32 mechanically
ventilated medical ICU
patients; participants
recruited from
previous RCT as well as
contemporaneous
cohort were followed
up 6 months after
discharge

Structured interview
by clinical psychologist
plus self-report
measures (IES-R, SF-36,
STAI, BDI, PAIS)
Locally developed
questions to assess
recollection of ICU

Many patients recalled
being in ICU when
questioned in their hospital
stay (68% control vs. 69%
intervention, p = 1.0); there
was a trend towards more
patients in the control
group recalling waking in
ICU when questioned at 6
months (26% control vs. 0%
intervention, p = 0.06).

Specific methodology
or instruments were
not used to measure
memories of ICU – the
information appears to
have been collected
during the follow-up
interview; potentially
biased cohort given
small proportion of
eligible patients
enrolled.

Pierce et al. 2004;
United Kingdom4

To examine the
association of
delusional and real
memories with
pre-operative and
post-operative factors.

161 cardiac surgical
patients with ICU LOS
>4 days; retrospective
cohort study with
follow-up 2–5 years
after surgery in 1
hospital

Modified ICU-MT with
no validation of
modification

Patients were categories as
‘dreamers’ (1 or more
memories of dreams,
nightmares, thoughts that
others were trying to inflict
harm, were plotting
against patient or that
patient had travelled after
surgery) or ‘non-dreamers.
Factors positively
associated with ‘dreamers’
included treatment with
intravenous 50% glucose,
midazolam, steroid therapy
and episodes of sepsis,
with the development of
new neurological signs
exerting a protective effect.

Clinical factors
collected through
retrospective chart
review; 161 of 423
possible patients
recruited (89 died, 59
whose GP refused
assent, 90 no
response); variable
follow-up time frame.

Schelling et al.
2004; Germany23

To examine whether
stress doses of
hydrocortisone after
cardiac surgery reduce
long term incidence of
chronic stress, PTSD
and traumatic
memories

91 cardiac surgery
patients; RCT with
follow-up at 2–3 days,
1 week and 6 months
(n = 48) after ICU in 1
hospital

PTSS-10 No significant difference in
number and categories of
traumatic memories
between patients in
hydrocortisone and control
groups: nightmares (23%
vs. 36%, p = 0.36), pain (19%
vs. 9%, p = 0.43), respiratory
distress (19% vs. 27%,
p = 0.73), anxiety/panic
(31% vs. 40%, p = .33).

Participants and
clinical staff blinded to
group allocation;
validated traumatic
memories
questionnaire.

8 L.M. Aitken et al. / Australian Critical Care 29 (2016) 5–14

Table 1 (Continued)

Author details Aim Participants and design Outcome measure Results Comments including
strengths and
limitations

Ringdal et al. 2006;
Sweden34

To describe trauma
patients’ memories of
ICU and identify factors
associated with
delusional memories

239 trauma ICU
patients; prospective
cohort study with
follow-up 6–18
months after ICU
discharge in 5 hospitals

ICU-MT Patients with clear
recollection of ICU had
shorter ICU LOS, were less
likely to require
mechanical ventilation and
have shorter duration of
mechanical ventilation,
and were less likely to
receive sedatives. Patients
with delusional memories
were younger, had longer
ICU LOS, higher
temperature; lower
haemoglobin and more
likely to have had renal
failure, surgery, ventilator
support, sedatives and
analgesics.

239 of 344 eligible
participants recruited
(66 did not reply, 39
declined;
non-responders had
shorter ICU LOS but
otherwise did not
differ from the final
participants); analysis
was limited to
bivariate analysis with
no multivariable
analysis reported.

Weis et al. 2006;
Germany35

To determine whether
hydrocortisone
administration reduced
chronic stress
symptoms after cardiac
surgery

36 high risk cardiac
surgery patients; RCT
with 6 month
follow-up after ICU in 1
hospital

PTSS-10
SF-36

Patients who received
hydrocortisone had a
shorter ICU LOS, lower TISS
scores, required less
norepinephrine and a
trend towards lower
pro-inflammatory cytokine
IL-6 as well as higher
quality of life scores and
lower chronic stress
symptom scores. Number
and type of traumatic
memories did not differ
between the two groups
(p ≤ .33).

Participants and
clinical staff were
blinded to group
allocation; 28/36
patients followed up (2
incomplete data, 6 did
not return
questionnaire) with no
differences between
those who completed
the study or not;
previously validated
memory instrument
used.

Samuelson et al.
2006 and
Samuelson et al.
2007; Sweden2,18

To investigate the
relationship between
(i) memory and
intensive care sedation
(ii) recall of stressful
experiences and
intensive care sedation

313 intubated
mechanically
ventilated adults
admitted to ICU for
>24 h; prospective
cohort study with
follow-up 6–10 days
after ICU in 2 hospitals

ICU-MT
ICU-SEQ

Patients with no recall of
ICU (18%) were older and
had fewer periods of
wakefulness (MAAS 0–2)
than those with memories
of ICU (82%). Patients with
delusional memories (34%)
had longer ICU stay, higher
baseline severity of illness,
higher proportions of
MAAS 4–6 and more
midazolam than those with
recall of ICU but no
delusional memories.
Patients with more periods
of wakefulness (MAAS 3),
longer ICU stay and
emergency admissions
recalled stressful
experiences as more
bothersome.

250 of 313 patients
completed the study;
convenience sampling
used to recruit
participants; patients
who were lost to
follow-up were more
frequently emergency
admissions and older
than those retained in
the study; previously
validated ICU Memory
Tool used to measure
recall; follow-up only
6–10 days after ICU.

Samuelson et al.
2008; Sweden3

To assess the presence
of stressful memories
in light vs. heavy
sedation

36 mechanically
ventilated
post-operative
patients; RCT with 2
month follow-up after
ICU in 1 hospital

ICU-MT
ICU-SEQ
IES-R

No significant difference in
memory between light
(MAAS 3–4) and heavy
(MAAS 1–2) sedation
patients; trend towards
more delusional memories
in the heavy sedation
group (33% vs. 6%, p = 0.09);
analysis excluding
prolonged ICU stay showed
higher prevalence of
delusional memories in
heavy sedation group (31%
vs. 0%, p = 0.04).

Previously validated
ICU Memory Tool used
to measure recall;
follow-up only 5 days
after ICU; pilot study
with small participant
numbers.

L.M. Aitken et al. / Australian Critical Care 29 (2016) 5–14 9

Table 1 (Continued)

Author details Aim Participants and design Outcome measure Results Comments including
strengths and
limitations

Weinert et al.
2008; USA7

To determine the
relationship between
critical illness factors
and ICU recall and
symptoms of
post-traumatic stress
disorder

277 adult ICU patients;
prospective cohort
study with follow-up 2
and 6 months post ICU
discharge

ICU amnesia score
(developed by study
authors–limited
validation of this tool);
Posttraumatic stress
diagnostic scale

Intensity of sedation
administration was not
associated with ICU recall
although there was weak
association between
increased wakefulness
during mechanical
ventilation and factual ICU
recall (r2 = 0.03–0.11,
p < 0.05).

Only 90 of 277 patients
provided data for 2 and
6 month follow-up;
those who completed 2
month follow-up were
more likely to be
treated in the surgical
ICU, had shorter
duration of mechanical
ventilation and better
mental status prior to
intubation; recall of
ICU experience
measured using
appears to have been
locally developed with
no validation
described.

Sackey et al. 2008;
Sweden17

To compare memories
of ICU after sedation
with intravenous
midazolam or inhaled
isoflurane

40 mechanically
ventilated general ICU
patients; RCT with
follow-up 6 months
after ICU in 1 hospital

ICU-MT
HADS
IES
WB

Trend towards less
memories of hallucinations
or delusions in the
isoflurane group although
this did not reach
statistical significance
(2/10 vs. 5/7, p = 0.06). No
significant differences
between the groups in
regard to memories of
feelings or factual events.

Only 17 of 40 patients
provided data (11 died;
12 non-responders);
no control of other
related factors such as
opioid medications and
ICU LOS.

Treggiari et al.
2009;
Switzerland32

To determine if light
sedation, compared to
deep sedation, affects
subsequent patient
mental health

137 patients requiring
mechanical ventilation
(129 included in
analysis); RCT with
follow-up at hospital
discharge and 4 weeks

PCL
IES-R
HADS

At hospital discharge more
patients in the deep
sedation group had
“trouble remembering
important parts of the
stressful experience” (37%
vs. 13%, p = 0.01), this
remained similar (37% vs.
14%, p = 0.02) at 4 weeks;
similar patterns were
reported in regard to
“repeated, disturbing
memories of the stressful
experience” (18% vs. 4%;
p = 0.05 at both discharge
and 4 weeks)

No specific instruments
used to assess patients’
memories however 2
items in the PCL
address memories.

Ethier et al. 2011;
Canada30

To evaluate recall of
ICU stay in patients
managed with 2
sedation strategies: a
sedation protocol or a
combination of
sedation protocol and
daily sedation
interruption

21 adult ICU patients
managed with sedation
protocol or no sedation
protocol; pilot RCT
with follow-up 72 h
after ICU discharge

Patients Recall
Questionnaire (develop
by study authors–no
validation of this tool)

No significant differences
in the recall of ICU
experiences between the 2
groups. More than 50% of
patients in both groups
recalled experiencing pain,
anxiety or fear while in the
ICU and 48%, 33% and 29%
of the 21 patients had no
memories of endotracheal
tube suctioning, being on a
breathing machine or
being bathed, respectively.

Convenience sampling,
with 26 of a potential
39 patients approached
and 21 patients
enrolled;
Non-validated, locally
developed, instrument
used to measure
short-term recollection
of ICU; Extremely
short-term (72 h)
follow-up.

MAAS: Motor Activity Assessment Scale; ICU-MT: ICU Memory Tool; IES-R: Revised Impact of Event Scale; SF-36: Medical Outcomes Study SF 36 item short-form health
s AIS: P
s rienc
P

m
e
3

a
o
e

urvey; STAI: State and Trait Anxiety Inventory; BDI: Beck Depression Inventory; P
cale; IES: Impact of Event Scale; WB: Well-Being Index; ICU-SEQ: ICU Stressful Expe
CL: PTSD Checklist

edications and the duration of mechanical ventilation were also
xplored in a small number of studies.

.1. Sedation and analgesia

Sedation and analgesia have been explored as possible factors
ssociated with patients’ ability to recall ICU events with most
f the evidence indicating that these therapies have some influ-
nce in this area.2–4,17,32,34 Depth of sedation, as measured using

sychological Adjustment to Illness Score; HADS: Hospital Anxiety and Depression
es Questionnaire; PTSS-10: Posttraumatic Stress Symptoms 10-Question Inventory;

various sedation assessment scales, has been proposed as hav-
ing a significant impact on patients’ recall of ICU events. Deeply
sedated patients reported amnesia of their ICU stay (OR 1.60, 95% CI
1.35–1.91, p < 0.0001),2 had “trouble remembering important parts of the stressful experience” (37% vs. 13%, p = 0.01),32 and reported

more repeated, disturbing memories (18% vs. 4%, p < 0.05).32 Fur- ther, more deeply sedation patients reported delusional memories (33% vs. 6%, p = 0.09)3 (OR 1.76, 95% CI 1.14–2.72, p = 0.008)2 3–5 days after ICU discharge.

10 L.M. Aitken et al. / Australian Critical Care 29 (2016) 5–14

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(n = 1,548)

Recor ds excluded
(n = 1,484)

Full-text ar�cles ass ess ed
for eligibility

(n = 64)

Full-text ar�cl es exclud ed,
with reason s

(n = 50)
Did not measure
asso cia�o n = 24

ICU tr eatment not studied
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Fig. 1. PRISM

In contrast, the depth of sedation appeared to influence patients’
erception of stressful experiences during ICU treatment with
he more awake patients reporting more stressful or bother-
ome memories, as described on the ICU-stressful experiences
uestionnaire.18 These findings are not consistent with Weinert
nd Sprenkle7 who identified no association between inten-
ity of sedation administration and ICU recall in a cohort of
edical-surgical ICU patients, although they did report a weak

ssociation between increased wakefulness and factual ICU recall
r2 = 0.03–0.11, p < 0.05).7

The association between specific medications such as benzodi-
zepines, opioids and propofol during ICU treatment and memories
f ICU has also been investigated although again, the evidence is
onflicting. A retrospective study including 161 cardiac surgery
urvivors reported a significant association between delusional
emories and midazolam infusion (OR 3.51 95% CI 1.59–7.75,

= 0.002) 2–5 years post ICU discharge.4 On the contrary, an explo-
ative multicentre investigation including 239 trauma participants
ound no such relationship between delusional memories and ben-
odiazepines, opioids, and propofol in multivariable analysis.34

imilarly, no statistically significant difference was reported in
emories by 17 patients enrolled in a pilot RCT designed to exam-

ne the effect of midazolam vs. isoflurane on memories, although
here was a trend towards less memories of hallucinations or
elusions in the group treated with isoflurane.17 Further, in 152

edical-surgical ICU patients the influence different regimens of

edation and analgesia (Group A: no morphine and <2 doses of a enzodiazepine; Group B: morphine without other sedative drugs, nd Group C: morphine and other sedative drugs) was examined.1

ohort = 1

w diagram.

It was concluded that analgesia (morphine) and sedation (propofol,
benzodiazepines and promazine) did not influence the incidence of
factual, sensation, and emotional memories of this cohort.1

The discrepancies in these different results might be explained
by the differences in the design of these studies (prospective vs.
retrospective cohorts vs. pilot RCT) and the characteristics of the
samples investigated (trauma, cardiac surgery and general ICU
patients). For example, delusional memories were reported by 26%
of the trauma patients34 compared to 48% of the cardiac surgery
group.4 In addition, benzodiazepines (no specific information pro-
vided about what medications were used) were administered to
24% of the trauma patients34 compared to 32% of the cardiac surgery
group who received midazolam.4 Delusional memories were not
specifically reported in the medical-surgical ICU group1 but emo-
tional memories incorporating hallucinations, nightmares, dreams
and feeling confused or down were reported in 15% of the group
receiving <2 doses of benzodiazepines and 32% of the group receiv- ing unlimited sedatives. In the cardiac surgery cohort both the prevalence of delusional memories (48%) and administration of midazolam (32%) were much higher than the trauma cohort.4 Of note, the trauma patients had an average ICU LOS of approximately 4 days34 while the cardiac surgery patients remained in ICU for an average of 5 (non-dreamers) or 7 days (dreamers).4

Different sedation strategies such as sedation protocols or seda-
tion interruption have been proposed as influencing patients’ recall

of their time in ICU. Despite the theoretical basis for such links, no
difference in the recall of ICU experiences including recollections of
fear, anxiety and pain measured on a locally developed instrument
were reported by 21 patients enrolled in a pilot RCT.30 This pilot

L.M. Aitken et al. / Australian Critical Care 29 (2016) 5–14 11

Table 2
Study quality appraisal using CASP criteria.

Author details Method Validity Significance Usefulness

Henderson et al.,
199433

RCT Selection bias: Unclear
Measurement bias: High
Assessment of confounding
variables: Low
Longevity of follow-up: Low

Reporting bias:
Unclear
Imprecise results

Low

usefulness

Capuzzo et al.
20011

Prospective cohort Selection bias: Low
Measurement bias: Unclear
Assessment of confounding
variables: High
Longevity of follow-up:
Unclear

Reporting bias:
Low
Precise results

Low usefulness

Kress et al. 200331 Prospective and
retrospective
cohort

Selection bias: Low
Measurement bias: High
Assessment of confounding
variables: Low
Longevity of follow-up: Low

Reporting bias:
Low
Imprecise results

Low usefulness

Pierce et al. 20044 Retrospective
cohort

Selection bias: High
Measurement bias: High
Assessment of confounding
variables: Unclear
Longevity of follow-up: High

Reporting bias:
Low
Imprecise results
Low usefulness

Schelling et al.
200423

RCT Selection bias: Low
Performance bias: Low
Attrition bias: Low
Detection bias: Low

Reporting bias:
Low
Imprecise results

Moderate
usefulness

Ringdal et al.
200634

Prospective cohort Selection bias: Low
Measurement bias: Low
Assessment of confounding
variables: Low
Longevity of follow-up: Low

Reporting bias:
Low
Precise results

High usefulness

Weis et al. 200635 RCT Selection bias: Low
Performance bias: Unclear
Attrition bias: Low
Detection bias: Low

Reporting bias:
Low
Imprecise results
Moderate
usefulness

Samuelson et al.
2006 and
Samuelson et al.
20072,18

Prospective cohort Selection bias: Unclear
Measurement bias: Low
Assessment of confounding
variables: Low
Longevity of follow-up: High

Reporting bias:
Low
Precise results
Moderate
usefulness

Samuelson et al.
20083

RCT Selection bias: Low
Performance bias: Unclear
Attrition bias: low
Detection bias: Low

Reporting bias:
Low
Imprecise results
Moderate
usefulness

Weinert et al.
20087

Prospective cohort Selection bias: Unclear
Measurement bias: Unclear
Assessment of confounding
variables: Low
Longevity of follow-up: Low

Reporting bias:
Low
Precise results
Low usefulness

Sackey et al. 200817 RCT Selection bias: Unclear
Performance bias: High
Attrition bias: Low
Detection bias: Low

Reporting bias:
Low
Imprecise results
Moderate
usefulness

Treggiari et al.
200932

RCT Selection bias: Low
Performance bias: Low
Attrition bias: Low
Detection bias: Unclear

Reporting bias:
Low
Imprecise results
Moderate
usefulness

Ethier et al. 201130 RCT Selection bias: Low
bias:
: Low
s: Low

Reporting bias: Moderate

s
v
o
s
a
p
(
o
d

g
t

Performance
Attrition bias
Detection bia

tudy was designed to examine the effect of protocolised sedation
s. protocolised sedation and daily sedative interruption on mem-
ries, with findings indicating that recall was not correlated with
edation scores or doses of sedation received.30 Similarly, Kress
nd colleagues31 found no difference in the number of usual care
atients vs. sedation interruption patients who recalled being in
68% vs. 69%, p = 1.0), or waking in (26% vs. 0%, p = 0.06), ICU. Both
f these studies were small (n = 21 and 32), with limited ability to

etect meaningful differences.

The relatively limited evidence regarding sedation and anal-
esia in ICU patients suggests that these therapies contribute to
he patients’ ability to recall ICU events and to the development

Unclear Low
Imprecise results

usefulness

of delusional memories and amnesia of ICU stay. However, the
evidence is conflicting and inconclusive. Larger studies explor-
ing different aspects of sedation and their association with the
development of memories of the ICU during recovery are needed.

3.2. Other medications

The theory that the exogenous administration of stress doses

of corticosteroids provides a protective effect against the devel-
opment of traumatic memories was tested in two small RCTs of
cardiac surgical ICU patients.24,35 Although some other benefits
such as shorter ICU LOS and improved quality of life scores were

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een in those receiving corticosteroids, no significant difference
as found in the incidence of traumatic memories in either of these
CTs. In contrast, a significant association between corticoids and
elusional memories (OR 10.2 95% CI 1.11–93.0, p = 0.04) was iden-
ified in a small (n = 161) retrospective cohort study.4 Although
his finding was statistically significant, it is important to note
he limitations of the study design and that only eight out of 161
atients received corticoids during ICU, with six of these patients
eporting delusional memories.4 In this same study a significant
ssociation between delusional memories and the administration
f intravenous 50% glucose to treat hypoglycaemia (OR 15.5, 95% CI
.19–66.4) was identified. To aid understanding of these results it
ould have been beneficial if data regarding the severity of hypo-

lycaemia were presented since one could speculate that the real
isk factor for delusional memories was hypoglycaemia instead of
he administration of 50% glucose. Another point to consider is the
urprisingly high proportion (35%) of participants who received
oluses of glucose during ICU treatment, which could reflect selec-
ion bias with participants not being representative of the usual ICU
opulation.

.3. Duration of mechanical ventilation and ICU stay

The presence or duration of mechanical ventilation has also been
roposed as influencing memories after ICU, particularly in regard
o the development of traumatic or distressing memories or the
bsence of memories. The duration of mechanical ventilation is
ften related to the length of ICU stay which may be used as an
ndirect marker of this treatment. Approximately half of the 206

echanically ventilated general ICU patients who had memories of
he ICU recalled discomfort associated with the endotracheal tube
hat were bothersome and those who were bothered by stressful

emories of the ICU had longer ICU LOS.18 In contrast, although
entilator support was linked to delusional memories on univariate
nalysis in 239 trauma patients, it did not retain statistical signif-
cance when incorporated into multivariable analysis.34 Similarly,

echanical ventilation was not associated with factual, sensational
r emotional memories in 152 ICU patients.1

.4. Measures and methods used to assess patients’ memories

Memories were measured using a variety of instruments
ncluding structured interviews,1,31,36 the ICU stressful expe-
ience questionnaire (ICU-SEQ),2,3,18 ICU memory tool (ICU-
T)2,3,17,18,34, Posttraumatic Stress Symptoms 10-Question Inven-

ory PTSS-1023,35 and author-developed surveys (Patients Recall
uestionnaire30 and ICU amnesia tool)7 or questions.31 A mod-

fied version of the ICU-MT (with no validation of modification)
as used in one study.4 In another study no specific instru-
ent to assess patients’ memories was used, but two items of

he Post-Traumatic Stress Disorder Checklist (instrument to assess
ymptoms of posttraumatic stress) that address memories.32 Mem-
ries were assessed at varied time points in the included studies,
rom 72 h30 to 5 years4, with the most common follow-up being
pproximately six months after discharge (Table 1).

. Discussion

The relationship between intensive care interventions and
emories of ICU after discharge was examined in this review.

edation practice was the most common intensive care treatment
nvestigated in relation to the development of memories of ICU,

ut the evidence was inconsistent for the elements of care (e.g.
eep vs. light sedation, different sedative medications, daily seda-
ion interruption). Deep sedation during ICU treatment frequently
as associated with amnesia and delusional memories while light
tical Care 29 (2016) 5–14

sedation was associated with a greater risk of perceiving stress-
ful experiences more bothersome.2,3,18,32 Despite these identified
associations, no such association was reported in one study.7 This
relationship between level of sedation and memories after ICU
is particularly important to understand given the move towards
lighter sedation over the past decade.26

When considering the specific sedative agents, benzodiazip-
ines, including midazolam, were associated with the development
of delusional or hallucination-like memories of ICU in some
settings.4,17 This relationship with delusional memories warrants
further exploration since the available evidence is small and incon-
sistent. Although this relationship was found in two included
studies, it was not identified in others.1,34 Since these four stud-
ies differ in essential aspects of their design (e.g. prospective vs.
retrospective; cardiac vs. trauma vs. general ICU patients), the com-
parison between them might not be appropriate and therefore the
interpretation of the evidence in regard to benzodiazipines is incon-
clusive.

Different sedation strategies such as using sedation protocols,
daily sedation interruption and various sedative agents such as
midazolam, isoflurane, morphine and propofol were tested to eluci-
date their association with memories of ICU.1,17,30,31 No particular
strategy was found to be better or worse than others. Neverthe-
less, these studies had relatively small sample sizes with restricted
ability to determine significant differences. Future studies testing
different sedation strategies should incorporate larger sample sizes
in their design so as to be able to detect significant effects.

Interventions other than sedation that have been examined in
relation to ICU memories were corticosteroids and intravenous
50% glucose to treat hypoglycaemia. The evidence on the associ-
ation between stress doses of corticosteroids and memories of ICU
is limited. As slightly different aspects of memories of ICU were
explored in these studies, the comparison between them is diffi-
cult. In two RCTs the factor explored was the incidence of traumatic
memories (memories of pain, nightmares, anxiety and difficulty
breathing) compared with the presence of delusional memories in
one retrospective study.4,24,35 Delusional memories were associ-
ated with the administration of corticosteroids, but no association
between hydrocortisone and the incidence of traumatic memories
of anxiety, pain, nightmares and difficulty breathing was found in
the RCTs.

Intravenous 50% glucose to treat hypoglycaemia was associated
with delusional memories.4 Unfortunately, information regarding
the severity of hypoglycaemia was not presented and it could
be speculated that 50% glucose might be a confounder and that
hypoglycaemia might have been the real risk factor for delusional
memories. In addition, the high proportion of participants treated
with this medication suggests selection bias.

No relationship between mechanical ventilation and delusional,
factual, sensational or emotional memories was found in the
literature.1,34 Despite the evidence being limited to two studies,
the lack of relationship is consistent.

This review is limited by the nature of the question that guided
the process; only those studies that measured an association
between ICU interventions and memories were considered, result-
ing in the review being limited to studies designed to measure
variables quantitatively. Also to note, a range of interventions that
have the potential to influence memory have not been investigated,
for example early mobilisation and use of alternative sedative
agents such as dexmedetomidine. Further, scales that assess either
memory or perceptions of the intensive care experience generally
have not undergone rigorous psychometric testing thus limiting

reliability and validity of findings. A number of scales exist and
this also makes it difficult to extrapolate consistent findings with
some assessing memories of specific events or treatments and oth-
ers perceptions of the experience. What however does seem clear

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L.M. Aitken et al. / Australi

s that patients can be distressed by their memories whether these
re factual or delusional,11,37,38 and that these memories have been
onsistently linked to poorer outcomes.13,18,39 The strength of that
ssociation has still to be established. Patients who have greater
wareness may report troublesome discomforts of thirst, having
ubes and being unable to communicate1,37 whereas patients who
xperience delusions often find these persecutory and there are
requent reports of staff trying to ‘kill’ patients or do harm to them.

hether these differences in perceptions or memories are related
o depth of sedation is not clear, although the evidence that deep
edation leads to limited recall of ICU and increased incidence of
elusional memories is reasonably consistent.2,3,18,32

Participants in the included studies were enrolled during their
ospital admission, with the exception of one retrospective study,4

owever the timing of follow up varied from prior to ICU dis-
harge to 5 years later, with the most common follow-up being
pproximately six months after discharge. Given the highly variable
ethods of assessing memory it is not possible to assess the effect

f these differences, however it is highly likely that it influences the
ontent and clarity of recall.

.1. Implications for practice and research

Although there is currently limited and inconsistent evidence,
he influence of sedation on memories has moderate support. Deep
edation is linked to limited recall of ICU and increased incidence
f delusional memories.2,3,32 This suggests that strategies to min-
mise sedation should continue to be developed and implemented.
espite this broad principle, there is currently conflicting evidence

egarding the role of different sedation strategies such as daily
edation interruption30,31 or the benefit or disadvantage of specific
edative agents4,17 and additional research involving larger sam-
le sizes and effective control of related interventions is urgently
eeded.

Further, scales that assess either memory or perceptions of the
ntensive care experience generally assume that patients who recall
eing ‘attacked’ or have ‘people trying to hurt me’ are delusional
owever this might not be the case. Instead patients may be inter-
reting behaviours in different, and individual, ways. This variation

n experience should be considered as we research and implement
volving strategies such as patients being more alert and oriented
uring ICU admissions – this experience may affect each patient
ifferently.

. Conclusion

Identification of elements of ICU treatment that affect memories
uring recovery has the potential to influence how care is delivered.
spects of care that have been examined include sedation and anal-
esia, other medications and mechanical ventilation. Although the
vidence was inconsistent, and the numbers of participants was
requently small, it appears that some aspects of treatment may
nfluence the absence of memory or development of delusions and
allucinations.

cknowledgements

All authors have approved the final article and acknowledge that
ll those entitled to authorship are listed as authors.

To answer the Continuing Professional Development
uestions – go to page 12 http://dx.doi.org/10.1016/S1036-
314(16)00010-2.

tical Care 29 (2016) 5–14 13

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What is the relationship between elements of ICU treatment and memories after discharge in adult ICU survivors?

1 Introduction
2 Method
2.1 Eligibility criteria
2.2 Search methods
2.3 Data extraction and quality appraisal
2.4 Data synthesis
3 Results
3.1 Sedation and analgesia
3.2 Other medications
3.3 Duration of mechanical ventilation and ICU stay
3.4 Measures and methods used to assess patients’ memories
4 Discussion
4.1 Implications for practice and research
5 Conclusion
Acknowledgements
References

Cancer Treatment and Research Communications 27 (2021) 10031

Available online 29 January 20

2468-2942/© 2021 The Author(s). Published by Elsevier Ltd. This is an open access article under the CC BY-NC-ND license
(http://creativecommons.org/licenses/by-nc-nd/4.0/).

A scoping review of literature: What has been studied about adolescents
and young adults (AYAs) with cancer?

Camila M. Telles a, b, *

a Graduating in Psychology – Senior year, Positivo University – Curitiba, Paraná, Brazil (Student)
b Teen Cancer America – Los Angeles, California, the United States of America (Intern Pro Cancer)

A R T I C L E I N F O

Keywords:
Scoping review
Field gaps
Study purposes
Research goals

A B S T R A C T

Purpose: To map, organize and analyze the articles published in the last five years about AYAs with cancer.
Methods: CAPES database and Google Scholar were searched to identify relevant studies from 2015 to February
2020. Eligible articles included empirical or theoretical research, quantitative and/or qualitative studies, tar-
geted AYAs with cancer, addressed different topics related to AYAs such as unmet needs, hospital challenges,
interventions or tools based on evidence, as well as political and socioeconomic aspects.
Results: Of the 161 articles analyzed, 74 (46%) discussed the health system, including hospital dynamics,
treatment and interventions during treatment; 63 (39.1%) discussed aspects or interventions that influence the
quality of life and mental health of AYAs with cancer; 14 (8.7%) discussed issues related to sexual health; and 10
(6.2%) addressed social, economic and demographic problems of AYAs with cancer. Three types of purposes have
been identified in the articles: 118 (73.3%) investigated variables in areas related to AYAs with cancer, aiming to
increase the understanding of the phenomenon and the needs of AYAs; 18 (11.2%) intervened on the needs of
AYAs with cancer through pilot studies or evidence-based interventions; and 22 (13.7%) aimed to evaluate an
intervention previously performed or to evaluate an intervention based on evidence.
Conclusion: There is still much to be researched within the last two categories. In the last three years, these
categories have been growing gradually and on a small scale.

Introduction

The scarcity of support, service and research personalized to the
health of adolescents and young adults (AYAs) with cancer or survivors
is evident[1,2,3,4,5]. In recent years, even with advances of health and
science professionals in the awareness of the importance of looking at
this audience and developing specific interventions for them, there are
still many gaps to be filled[6,7]. Due to the diversity of these gaps, filling
them effectively may become even more difficult for professionals and
researchers in the area. This article aims to map, organize and analyze
the articles published in the last five years on AYAs with cancer and
survivors. An overview that considered the extension of the field was
prioritized, instead of focusing on a specific theme studied in it. The
following questions guided the mapping of this scoping review:

(1) Do the purposes of the selected articles have any standards that
may be scientifically relevant to the area if identified?

(2) Is there a scientific gap larger than others that needs to be
prioritized in this field of study aimed at AYAs with cancer?

Methods

Literature search strategy

The scoping review was carried out in February 2020. Combinations
of the terms “Adolescent and young adults” or “AYAs with cancer” with
“main needs” and “cancer” with “Adolescent and young adults” or “AYAs
main needs” were used in the journals of the Coordenação de Aperfei-
çoamento de Pessoal de Nível Superior (CAPES) and Google Scholar. The
search was limited only to peer-reviewed articles, in either English or
Portuguese.

Screen and selection criteria

Initially, 442 articles were screened by their title and abstract

* Corresponding author at: Oscar Borges de Macedo Ribas, 135 – AP 701, Curitiba, Paraná, Zip Code: 81.200-521.
E-mail address: camimarochi18@gmail.com.

Contents lists available at ScienceDirect

Cancer Treatment and Research Communications

journal homepage: www.sciencedirect.com/journal/cancer-treatment-and-research-communications

https://doi.org/10.1016/j.ctarc.2021.100316

mailto:camimarochi18@gmail.com

www.sciencedirect.com/science/journal/2468294

https://www.sciencedirect.com/journal/cancer-treatment-and-research-communications

https://doi.org/10.1016/j.ctarc.2021.1003

https://doi.org/10.1016/j.ctarc.2021.100316

http://crossmark.crossref.org/dialog/?doi=10.1016/j.ctarc.2021.100316&domain=pdf

http://creativecommons.org/licenses/by-nc-nd/4.0/

Cancer Treatment and Research Communications 27 (2021) 100316

(Fig. 1). The author evaluated 270 articles to decide which of them
would be eligible for analysis. For this purpose, the following criteria
were established: studies targeting only AYAs with cancer or survivors;
being published between 2015 and 2020; being either in English or
Portuguese; being an empirical or theoretical research, quantitative
and/or qualitative; addressing different topics related to AYAs, such as
unmet needs, AYAs challenges, hospital challenges, interventions or
tools based on evidence, as well as political and socioeconomic aspects
of this population. This review was conducted by one person, without
blinded evaluation.

Studies that included children or adults with cancer together or in
comparison with AYAs were excluded. The age range applied to define
the population of AYA in the cancer treatment differs from one country
to another[10]. Some researchers and health professionals in the area
focused on the cancer treatment of AYAs considered the age range from
15 to 39, while others considered it from 15 to 29 or even 20 to 29 [8,10]
. This discrepancy creates problems to assist effectively this population
world widely. Since this paper aimed to consider the unmet needs of
AYAs in a broader way, the age range chosen by each article to define the
population of AYAs was neither exclusion nor inclusion criteria. If the
term “AYA” was used to define its population in a study and there were
no other populations (children or adults) being compared with it, the
study was included.

Case studies, theses, dissertations, narrative literature reviews, re-
ports, book chapters, books, summaries or testing of protocols and ar-
ticles describing non-evidence based interventions or tools were
excluded. Additionally, in order to analyze reliable data, only peer-
reviewed researches that had been published in relevant Journals or
magazines in the area were included.

Data analysis

With the Preferred Reporting Items for Systematic Reviews and
Meta-Analyses (PRISMA), it is possible to visualize the steps of this
scoping review more clearly (Fig. 1).

As presented above, 474 articles were identified. Out of these, 204
articles were excluded for being a duplicate or having titles and abstracts
that did not meet the including criteria. Out of the 270 remaining arti-
cles, 109 were still ineligible under the exclusion criteria. Finally, 161
articles were included and analyzed in their entirety. Appendices A and

B show the characteristics of the included studies divided in theoretical
and empirical, respectively.

The data was extracted in two stages. The first stage consisted of
identifying the following aspects of the articles included: a) research
theme, b) research purpose, c) study type, d) study design, e) focused
population and f) country. By compiling the data from these aspects in
Excel spreadsheets, it was possible to quantify how many researches
focused on different themes, purposes, study types and designs, popu-
lation (AYAs, family of AYAs, caregivers, etc.) and, also, to quantify the
amount produced per country in this scientific area.

Despite the substantial number of objective data collected in the first
stage described above, the second stage needed a thorough sentence
interpretation. As this review raised questions about the purposes of the
researches, the author directly approached each of their purpose sen-
tences, aiming to identify any kind of pattern. By analyzing those sen-
tences, it was possible to identify three different purpose patterns
described in the discussion, since they are more interpretative than
objective results. Appendices A and B show the sentences that were
analyzed and the pattern in which they fit in.

Results

Characteristics of included studies

Theme
The 161 articles have four specific themes related to AYAs with

cancer. They are: (1) Health system/treatments, (2) Quality of Life, (3)
Sexual Health and (4) Social Issues. Most of the studies (46%) discuss
aspects of the health system, hospital dynamics, treatment and in-
terventions that could have an impact on AYAs with cancer during
treatment. The second largest amount (39.1%) of articles discuss aspects
or interventions that directly influence the quality of life and mental
health of AYAs with cancer. In third, 8.7% discuss issues and in-
terventions related to sexual health, especially fertility and decision
making during treatment. The remaining articles address the social,
economic and demographic problems of AYAs with cancer, accounting
for 6.2% of the total (Fig. 2). In addition, out of the 161 articles
analyzed, 18 studies (11.1%) were related to the use of technology to
assist AYAs with cancer. Out of the 139 empirical studies, 44.6% dis-
cussed health system/treatments, 40.29% discussed quality of life,
8.63% discussed sexual health and 6.47% discussed social issues. Among
all empirical studies, 17 (12.2%) study the use of technology to improve
patient care. Out of the 22 theoretical studies, 54.55% discuss health
system/treatments, 31.82% discuss quality of life, 9.09% discuss sexual
health and 4.55% discuss social issues. Among all theoretical studies,
one of them (4.5%) studies the use of technology in assisting AYAs.

Fig. 1. PRISMA diagram of the search results. The Preferred Reporting Items
for Systematic Reviews and Meta-Analyses (PRISMA) allows visualizing the
steps of this systematic review: identification (474), screening (442), eligibility
(270) and included (161).

Fig. 2. Graph – Themes of 161 articles. The 161 articles have four specific
themes related to AYAs with cancer: health system/treatments with 74 articles
(46%), quality of Life with 63 articles (39.1%), sexual health with 14 articles
(8.7%) and social issues with 10 articles (6.2%).

C.M. Telles

Cancer Treatment and Research Communications 27 (2021) 100316

Types of studies
The 161 articles analyzed, as previously stated, were divided into

empirical and theoretical studies. Out of the 139 empirical studies, 130
are qualitative and nine are qualitative and quantitative. Out of the
theoretical studies, four are qualitative, one is quantitative and 17 are
qualitative and quantitative. Thus, in total, 134 are qualitative studies,
26 are qualitative and quantitative and one is quantitative.

Study designs
The procedures and instruments used in the 139 empirical studies

varied according to the following: 10.07% were experimental studies
(pilot studies, pre-post or interventions); 18.71% were Cohort studies
(prospective, retrospective or longitudinal); 2.16% were documental;
27.34% were questionnaires only; 22.30% were surveys only; 8.63%
were interviews only; and 10.79% were mixed procedures (combination
of survey, interview, questionnaires, focus groups, medical records,
scales, record sessions, etc.). Out of the 22 theoretical studies, 68.18%
were systematic reviews, 9.09% were systematic reviews and meta-
analysis, 9.09% were scoping reviews, 4.55% were meta-analysis,
4.55% were integrative reviews and 4.55% were critical reviews.

Countries
The 161 articles were published in different countries, according to

the following: 70 in the USA (43.48%), 39 in Australia (24.22%), 10 in
the United Kingdom (6.21%), 9 in Germany (5.59%), 5 in Canada
(3.11%), 4 in the Netherlands (2.48%), 4 in Denmark (2.48%), 3 in
Belgium (1.86%), 2 in China (1.24%), 2 in Italy (1.24%), 2 in Norway
(1.24%), 2 in Spain (1.24%), 1 in Brazil (0.62%), 1 in France (0.62%), 1
in Japan (0.62%), 1 in Korea (0.62%), 1 in Scotland (0.62%) and 1 in
Sweden (0.62%). Two articles are continental studies: one is Asian and
the other is European. Out of the 161 articles, as already mentioned, 139
are empirical studies. Their countries of origin are as follows: 62 were
carried out in the USA (44.60%), 34 in Australia (24.46%), 8 in Germany
(5.76%), 5 in the United Kingdom (3.60%), 4 in Canada (2.88%), 4 in
Denmark (2.88%), 4 in the Netherlands (2.88%), 2 in Belgium (1.44%),
2 in China (1.44%), 2 in Italy (1.44%), 2 in Norway (1.44%), 1 in Brazil
(0.72%), 1 in France (0.72%), 1 in Japan (0.72%), 1 in Korea (0.72%), 1
in Scotland (0.72%), 1 in Spain (0.72%) and 1 in Sweden (0.72%), as
well as the two continental studies previously mentioned. Out of the 22
theoretical studies, 8 were carried out in the USA (36.36%), 5 in
Australia (22.73%), 5 in the United Kingdom (22.73%), 1 in Belgium
(4.55%), 1 in Canada (4.55%), 1 in Germany (4.55%) and 1 in Spain
(4.55%).

Focused population
In general, the articles focus on AYAs with cancer, but some also aim

to analyze the relationship of professionals who assist AYAs and their
professional perspectives, as well as the families of patients. Out of the
161 articles, 82.61% focus only on AYAs with cancer, 8.70% refer to
AYAs and the professionals who care for them, 3.73% study AYAs with
cancer and their families, 3.11% refer only to professionals, 1.24% refer
only to families, and 0.62% include all. Out of the 139 empirical studies,
79.86% refer strictly to AYAs with cancer, 10.07% involve AYAs with
cancer and their professionals, 4.32% involve AYAs and their families,
3.60% are restricted to professionals, 1.44% to family and 0.72% to
everyone. Regarding the 22 theoretical studies, all of them refer only to
AYAs with cancer.

Discussion

Purpose pattern

From the analysis of the 161 articles, a pattern in their research
purposes was recognized. As described in the Data Analysis, the second
stage in the data extraction was collecting, analyzing and interpreting
each of the purpose sentences (Appendices A and B). By compiling these

data, it was possible to evaluate whether there were any similarities in
the purposes.

The vast majority aimed to raise more data involving AYAs with
cancer, so that there would be greater awareness of the researched topic.
Part of the articles aimed to test evidence-based interventions or to turn
a pilot study into scientific evidence. Another part of the articles aimed
to evaluate interventions previously applied in institutions or to eval-
uate evidence-based interventions. Due to this interpretation, dividing
the articles into three categories was proposed according to their ob-
jectives: (a) Awareness, (b) Action and (c) Post- action evaluation.

Purpose pattern:

awareness

The “Awareness” classification was assigned to all articles that
investigated variables in areas related to AYAs with cancer, aiming to
increase the understanding of the phenomenon and, thus, to raise
awareness of the needs of AYAs. Out of the 161 articles, 118 (73.3%)
were classified in this category, with a total of 55 from the USA, 27 from
Australia, eight from Germany and six from the United Kingdom, with
the rest of the other countries already mentioned. Out of the 139
empirical studies, 105 fell into this category and out of the 22 theoretical
studies, 13 were included. In addition, three out of the 22 theoretical
studies were classified as Awareness and Action (two from the USA and
one from the UK), as they aimed to disseminate knowledge of issues
related to AYAs with cancer, as well as to discuss or present different
interventions used with them. In total, over the past five years
(2015–2020), 11, 19, 29, 34, 24 and 3 studies falling into this category
were published each year, respectively.

Purpose pattern:

action

The articles classified as “Action” proposed to intervene on the needs
of AYAs with cancer directly with them, their families or professionals,
through pilot studies or evidence-based interventions [104,105,106,
108,109,110,111,112,113,115,116,117,118,119,120,122,123,128,
130,131,132,133,134,135,137,138,140,142,145,147,148,150,152,
156,157,158,159,160,161,162]. Out of the 161 articles, 18 (11.2%)
were classified in this category, with seven from the USA, four from
Australia, two from Canada, two from Denmark, one from the
Netherlands and one from Sweden. Out of 139 empirical studies, 17 fell
into this category and one was included out of the 22 theoretical studies.
In total, over the past five years (2015–2020), two, zero, two, five, nine
and zero studies falling into this category were published each year,
respectively.

Purpose pattern: post-action evaluation

All articles that aimed to evaluate an intervention previously per-
formed at the institution or to evaluate an intervention based on evi-
dence were classified as “Post-action evaluation [103,107,114,121,124,
125126,127,129,136,139,141,143,144,146,149,151,153,154,155].
Out of the 161 articles, 22 (13.7%) were classified in this category, with
eight from Australia, six from the USA, three from the United Kingdom,
two from Canada and one from Germany. Out of the 139 empirical
studies, 17 fell into this category and five were included out of the 22
theoretical studies. In total, over the past five years (2015–2020), three,
five, three, three, six and zero studies falling into this category were
published each year, respectively. Figs. 3, 4 and 5 provide a better view
of the categorization of the 161 articles based on their objectives and
their relationship with each year and country, respectively.

The “Awareness” category has notably been the most searched in the
field, as shown in Figs. 3, 4 and 5. It is worth noting that all research[1,6,
8,9,10,11,12,13,14,15,16,17,18,19,20,21,22,23,24,25,26,27,28,29,30,
31,32,33,34,35,36,37,38,39,40,41,42,43,44,45,46,47,48,49,50,51,52,
53,54,55,56,57,58,59,60,61,62,63,64,65,66,67,68,69,70,71,72,73,74,
75,76,77,78,79,80,81,82,83,84,85,86,87,88,89,90,91,92,93,94,95,96,

C.M. Telles

Cancer Treatment and Research Communications 27 (2021) 100316

97,98,99,100,101,102] in this category point to the need for more
specific interventions for AYAs with cancer, as well as more protocols,
scales and evidences to confirm the effectiveness towards AYAs. In other
words, the research points to the need for more publications in the
“Action” and “Post-Action Evaluation” categories.

According to Fig. 4, a gradual increase in the “Action” and “Post-
Action Evaluation” categories is noticed since 2017, although they are
still very few compared to the “Awareness” category. If continued in this
graduation, the field of science aimed at AYAs with cancer will be
directed to address more effectively the demands already pointed out in

the articles. It is noteworthy that the low number of publications
computed in 2020 is due to the data collection being carried out in
February of this year.

In view of Fig. 5, the variation in the quantity of studies among the
countries that have more publications in the field is noticed: the USA,
Australia, the United Kingdom and Germany. Among these, the USA
stands out for the number of publications in the “Awareness” and “Ac-
tion” categories, while Australia stands out in the “Post-Action Evalua-
tion” category. The United Kingdom and Germany oscillate between
third and fourth place in the categories “Awareness” and “Post-

Action

Evaluation”.

Conclusions

The present research had as its main objective to map, organize and
evaluate the scientific articles that were published from 2015 to 2020
and researched, through different perspectives, the wide demands and
needs of adolescents and young adults with cancer. Through the full
analysis of the articles, Question 1 was answered and three patterns in
their purposes were identified, allowing the categorization of the articles
into “Awareness”, “Action” and “Post-Action Evaluation”. Question 2 was
answered in a quantitative way. As presented, it is concluded that there
is still much to be researched within the “Action” and “Post-Action
Evaluation” categories. In the last three years, these categories have
been growing gradually, even if on a small scale.

Most of the articles in the area pointed to the need for more research
related to interventions, specific protocols and scales to AYAs with
cancer. It was not possible to quantify the number of researches that
highlighted this essential demand so far, mainly because this review was
done by one author and this is its main gap. Due to the substantial
amount of researches screened, analyzed and synthesized, more than
one point of view would have been enriching. Although other collabo-
rators were not available to do this review from beginning to end, the
author shared the evolution of the stages and asked for advice to other
Teen Cancer America (TCA) collaborators that had experience in the
scientific field.

When looking at the research purpose, this article helps researchers
to identify the biggest gaps in the field and can help prioritize questions
to be answered, topics to be further researched and methodologies to be
chosen, based on the quantitative and qualitative evidence presented. As
this research focused on answering questions about the articles pur-
poses, the relevance of future studies that focus specifically in collecting,
mapping and analyzing what the researches conclusions are establishing
about area concerned with the AYAs with cancer must be emphasized.
Do they point in one direction? Do they have any patterns? Can they be
compiled and quantified? Are they relevant complements for the present
results? Can it be a better guidance for the researchers? By considering
the previous questions in future studies, it may be offered a guide for the
researchers in this area – which is so disregarded – since what most of the
researchers already pointed as needed could be easily accessed by
others. Furthermore, the different paths taken from their purposes to
their conclusions could be identified and better evaluated in order to
make it more effective. This kind of research cannot be useful to
advanced areas of study that already have known paths, but this
approach may be both important and effective considering the scarcity
of evidences focused on AYAs with cancer and the emergency to assess
their needs.

Funding statement

This research did not receive any specific grant from funding
agencies in the public, commercial, or non-profit sectors.

Author contributions

All was done by the author.

Fig. 3. Purpose patterns of 161 articles. From the analysis of the 161 articles, a
pattern in their research purposes was identified. Dividing the articles into three
categories was proposed, according to the patterns identified. This graph shows
the categories as Awareness with 118 articles (73.3%), Action with 18 articles
(11.2%) and Post-action evaluation with 22 articles (13.7%).

Fig. 4. Purpose patterns: amount of publications from 2015 to 2020. This
graph shows the amount of publications from 2015 to 2020 based on the three
main purpose patterns identified (Awareness, Action and Post-
Action evaluation).

Fig. 5. Purpose patterns: amount of publications per country. This graph shows
the amount of publications per country based on the three main purpose pat-
terns identified (Awareness, Action and Post-Action evaluation).

C.M. Telles

Cancer Treatment and Research Communications 27 (2021) 100316

Appendix A – Summary of 139 Empirical Studies

First author
(year)

Title Country Study design Study type

Focused
population

(with number)

Theme

Purpose Purpose
category

Abrol, E.
(2017)

Exploring the digital
technology preferences
of teenagers and young
adults (TYA) with cancer
and survivors: a cross-
sectional service
evaluation questionnaire.

United
Kingdom

Questionnaires Qualitative AYAs (102)

Heatlh
system/
treatments

with
technology

To establish (1) the current
pattern of use of TYA
digital technologies
within our service-user
population, and (2) their
preferences regarding
digital information and
support within the service.

awareness

Acquati, C.
(2018)

Sexual functioning
among young adult
cancer patients: A 2-year
longitudinal study.

USA Logitudinal cohort
study – survey

Qualitative AYAs (123)

Sexual
Heath

Investigate sexual
dysfunction in ayas over
the course of 2 years after
the initial diagnosis.

awareness

Baird, H.
(2019)

Understanding and
Improving Survivorship
Care for Adolescents and
Young Adults with
Cancer.

Australia Survey, Interview
and focus group

Qualitative AYAs (19),
Professionals
(75), Family
(7)

Heatlh
system/
treatments

This article canvases
consumer (survivor,
sibling, and parent/carer)
and health care
professional (HCP)
perspectives on AYA
survivorship care,
informing practice
improvements in the YCS
and providing system-level
recommendations to
advance the development
of national AYA
survivorship care initiatives
in Australia.

post

Ballantine, K.
(2017)

The burden of cancer in
25–29 year olds in New
Zealand: a case for a
wider adolescent and
young adult age range.

Australia Retrospective
cohort study – data
from New Zealand
Cancer Registry
(NZCR) –
(2000–2009)

Quanti-
quali

AYAs (1606) Heatlh
system/
treatments

Compare cancer incidence
and survival among 25–29
year olds to New Zealand’s
younger AYA population
and to assess survival for
our 15–29 year population
against international
benchmarks.

Awareness

Ballantine, K.
R. (2017)

Small numbers, big
challenges: adolescent
and young adult cancer
incidence and survival in
New Zealand.

Australia Retrospective
cohort study – data
from New Zealand
Cancer Registry
(NZCR) –
(2000–2009)

Quanti-
Quali

AYAs (1606) Heatlh
system/
treatments

Determine cancer survival
and describe the unique
spectrum of cancers
diagnosed among New
Zealand’s adolescents and
young adult (AYA)
population.

Awareness

Barton, K. S.
(2018)

“I’m not a spiritual
person.” How hope might
facilitate conversations
about spirituality among
teens and young adults
with cancer.

USA Interviews Qualitative AYAs (17)

Quality of
life

To 1) describe spiritual
narratives among ayas
based on their self-
identification as religious,
spiritual, both, or neither
and 2) identify language to
support ayas’ spiritual
needs in keeping with their
self-identities.

awareness

Beaupin, L. K.
(2019)

Photographs of meaning:
A novel social media
intervention for
adolescent and young
adult cancer patients.

USA Pilot study Qualitative AYAs (13)

Quality of
life with
technology

Assess the feasibility of a
novel intervention called
photographs of meaning
(POM).

action

Belpame, N.
(2016)

“The AYA Director”: a
synthesizing concept to
understand pstychosocial
experiences of
adolescents and young
adults with cancer.

Belgium Interviews Qualitative AYAs (23) Quality of
life

Describe the psychosocial
experiences of adolescents
and young adults with
cancer to further the
understanding of the
meanings they attribute to
their experiences.

awareness

Belpame, N.
(2018)

The 3-phase process in
the cancer experience of
adolescents and young
adults.

Belgium Interviews Qualitative AYAs (23) Quality of
life

Discover the psychosocial
experiences of and their
meanings for ayas enduring
cancer, as well as its
treatment and follow-up,
and to capture the basic
social psychological

awareness

(continued on next page)

C.M. Telles

Cancer Treatment and Research Communications 27 (2021) 100316
6

(continued )

First author
(year)
Title Country Study design Study type Focused
population
(with number)
Theme Purpose Purpose
category

process that shaped these
experiences.

Benedict, C.
(2016)

Fertility issues in
adolescent and young
adult cancer survivors.

USA Interview and
focus group

Qualitative AYAs (43) Sexual
Heath

Explore ayas’ discussions of
fertility in the context of
discussing their
survivorship experiences.

awareness

Bradford, N.
(2020)

Do specialist youth
cancer services meet the
physical, psychological
and social needs of
adolescents and young
adults? A cross sectional
study.

Australia Survey Qualitative AYAs (42) Heatlh
system/
treatments

Assess unmet information
and service needs in
adolescent and young adult
cancer survivors (15–29
years) who access specialist
Youth Cancer Services in
Queensland, Australia.

awareness

Bradford, N.
K.(2018)

Educational needs of
health professionals
caring for adolescents
and young adults with
cancer.

Australia Survey Qualitative Professionals
(122)

Heatlh
system/
treatments

Identify the learning needs
of health professionals
providing cancer care to
adolescents and young
adults before and following
the introduction of a state-
wide AYA cancer education
program.

awareness

Brauer, E. R.
(2018)

Coming of age with
cancer: physical, social,
and financial barriers to
independence among
emerging adult survivors.

USA Interview Qualitative AYAs (18) Heatlh
system/
treatments

Explore the transition to
self-care in the recovery
phase following HCT
among emerging adults.

awareness

Breuer, N.
(2017)

How do young adults
with cancer perceive
social support? A
qualitative study.

Germany Interviews Qualitative AYAs (18) Quality of
life

Explore and describe the
support YA receive from
their social environment as
well as the support YA
receive from peer cancer
patients.

awareness

Cha, S. (2016) Clinical application of
genomic profiling to find
druggable targets for
adolescent and young
adult (AYA) cancer
patients with metastasis.

Korea Experimental Qualitative AYAs (7) Heatlh
system/
treatments

Analyze cancer genomes
from rare types of
metastatic AYA cancers to
identify driving and/or
druggable genetic
alterations.

awareness

Chalmers, J.
A.(2018)

Psychosocial assessment
using telehealth in
adolescents and young
adults with cancer: a
partially randomized
patient preference pilot
study.

Australia Pilot study Qualitative AYAs (23) Quality of
life with
technology

Assess the feasibility and
acceptability for both
patients and clinicians of
providing a psychosocial
assessment via telehealth to
adolescents and young
adults currently receiving
treatment for cancer,
relative to face-to-face
delivery.

action

Cho, D. (2017) Moderating effects of
perceived growth on the
association between fear
of cancer recurrence and
health-related quality of
life among adolescent
and young adult cancer
survivors.

USA Survey Qualitative AYAs (292) Quality of
life

Examine how Fear of
Cancer Recurrence,
perceived growth, and
HRQOL were associated
with one another among
AYA survivors.

awareness

Curtin, K. B.
(2017)

Pediatric advance care
planning (pACP) for
teens with cancer and
their families: Design of a
dyadic, longitudinal
RCCT.

USA Experimental –
Evidence-based
intervention

Qualitative AYAs and
Family (260)

Heatlh
system/
treatments

Building Evidence for
Effective Palliative/End of
Life Care to evaluate the
efficacy of FACE-TC/// to
give ayas with cancer a
voice in the present if they
cannot speak for
themselves in the future, to
ensure that families know
what ayas would want in a
bad outcome situation, and
to explore if the care
desired is the care received
for those ayas who die
during the study.

action

Daniel, L.
(2016)

Relationship between
sleep problems and
psychological outcomes

USA Logitudinal cohort
study

Qualitative AYAs (167)
and control

Quality of
life

(1) compare AYA cancer
survivors to controls on
indicators of sleep quality,

awareness
(continued on next page)
C.M. Telles

Cancer Treatment and Research Communications 27 (2021) 100316

(continued )
First author
(year)
Title Country Study design Study type Focused
population
(with number)
Theme Purpose Purpose
category

in adolescent and young
adult cancer survivors
and controls.

group with
170

sleep quantity (total sleep
time and sleep onset
latency), sleep medication
use, and reports of
problematic sleep and
fatigue; (2) understand the
relationship between
psychological functioning
(anxiety, depression, and
posttraumatic stress) and
current medical concerns
with sleep and fatigue in
survivors and controls; and
(3) understand the
prospective relationship
across 2 months between
sleep and fatigue problems
with later mental health
symptoms in survivors
compared to controls.”

DeRouen, M.
C. (2016)

Disparities in adolescent
and young adult survival
after testicular cancer
vary by histologic
subtype: a population-
based study in California
1988–2010.

USA Retrospective
cohort study –
Medical records

Qualitative AYAs (14.249) Social issues To determine whether
race/ethnicity and/or
neighborhood
socioeconomic status (SES)
contribute independently
to survival of ayas with
testicular cancer.

awareness

DeRouen, M.
C.(2015)

Cancer-related
information needs and
cancer’s impact on
control over life
influence health-related
quality of life among
adolescents and young
adults with cancer.

USA Survey Qualitative AYAs (484) Quality of
life

Examine whether unmet
information need and
perceived control over life
are associated with health-
related quality of life

awareness

DeRouen, M.
C.(2017)

Sociodemographic
disparities in survival for
adolescents and young
adults with cancer differ
by health insurance
status.

USA Retrospective
cohort study –
Medical records

Qualitative AYAs (80.855) Social issues To investigate associations
of sociodemographic
factors—race/ethnicity,
neighborhood
socioeconomic status (SES),
and health insurance—with
survival for ado- lescents
and young adults (ayas)
with invasive cancer.

awareness

Dobinson, K.
A. (2016)

A grounded theory
investigation into the
psychosexual unmet
needs of adolescent and
young adult cancer
survivors.

Australia Interview Qualitative AYAs (11) Sexual
Heath

“delineate the pathways
through which AYA
survivor psychosexual
unmet needs manifest, and
to demonstrate further the
types of psychosexual
unmet needs experienced
by ayas.”

awareness

Domínguez,
M. (2017)

“Others Like Me”. An
approach to the use of the
internet and social
networks in adolescents
and young adults
diagnosed with cancer.

Spain Interviews Qualitative AYAs (20) Quality of
life with
technology

To improve comprehension
about how adolescents and
young adults (AYA) diag-
nosed with cancer use the
Internet and social
networks to seek
information about their
illness and to establish
relationships between
them.

awareness

Donovan, E.
(2019)

A mobile-based
mindfulness and social
support program for
adolescents and young
adults with sarcoma:
development and pilot
testing.

USA Pilot study Qualitative AYAs (37) Quality of
life with
technology

To (1) develop a pilot
version of a mobile-based
mindfulness and social
support program and (2)
evaluate program usage
and acceptability. An
exploratory aim was to
examine change in
psychosocial outcomes.

action

Elsbernd, A.
(2019)

Individual Experiences
and Utilization of
Supportive Resources in

USA Interviews Qualitative AYAs (28) Quality of
life

Understand and identify
AYA patient concerns and
experiences throughout

awareness
(continued on next page)
C.M. Telles

Cancer Treatment and Research Communications 27 (2021) 100316

(continued )
First author
(year)
Title Country Study design Study type Focused
population
(with number)
Theme Purpose Purpose
category

Adolescents and Young
Adults with Cancer.

cancer treatment, what
resources were utilized,
how they were identified,
and how supportive care
resources for AYA cancer
patients can be improved.

Erickson, J. M.
(2019)

Using a Heuristic App to
Improve Symptom Self-
Management in
Adolescents and Young
Adults with Cancer.

USA Interview Qualitative AYAs (85) Heatlh
system/
treatments
with
technology

Examine the effects of a
heuristic symptom
assessment tool on ayas’
self-efficacy for symptom
management, ayas’ self-
regulation abilities related
to their symptoms, and
communication with their
providers about symptoms.

post

Figueroa
Gray, M.
(2018)

Balancing hope and risk
among adolescent and
young adult cancer
patients with late-stage
cancer: a qualitative
interview study.

USA Interview Qualitative AYAs (12) and
Professionals
(5)

Heatlh
system/
treatments

Understand the decision-
making experience of AYA
patients with advanced
stages of cancer.

Awareness

Flink, D. M.
(2017)

Priorities in fertility
decisions for
reproductive-aged cancer
patients: fertility
attitudes and cancer
treatment study.

USA Interview Qualitative AYAs (27) Sexual
Heath

To understand the pri-
orities and decision-making
needs for newly diagnosed
AYA cancer patients by
exploring why some
patients elect FP and others
do not.

awareness

Franklin, M.
(2018)

An invisible patient:
Healthcare professionals’
perspectives on caring for
adolescents and young
adults who have a sibling
with cancer.

Australia Interviews Qualitative Professionals
(9)

Quality of
life

Explore healthcare
professionals’ (hcps’)
perspectives on engaging
and supporting adolescent
and young adult (AYA,
12–25 years) siblings of
young cancer patients in
hospital settings.

awareness

Frederick, N.
N.(2018)

Barriers and facilitators
to sexual and
reproductive health
communication between
pediatric oncology
clinicians and adolescent
and young adult patients:
the clinician perspective.

USA Interview Qualitative Professionals
(22)

Sexual
Heath

Investigate the attitudes
and perceptions of pedi-
atric oncology clinicians
towards discussing SRH
with ayas, and to
understand perceived
barriers to effective
communication in current
practice.

awareness

Froude, C.
(2017)

Contextualizing the
young adult female
breast cancer experience:
Developmental,
psychosocial, and
interpersonal influences.

USA Interviews Qualitative AYAs (23) Quality of
life

Explore the illness
experience of aya women
diagnosed with breast
cancer

awareness

Geue, K
(2018)

Prevalence of mental
disorders and
psychosocial distress in
German adolescent and
young adult cancer
patients (AYA).

Germany Interviews Qualitative AYAs (167) Quality of
life

Provide prevalence data of
mental disorders (four-
week, one-year, lifetime)
and psychological distress
in ayas with cancer.

awareness

Geue, K.
(2015)

Sexuality and romantic
relationships in young
adult cancer survivors:
satisfaction and
supportive care needs.

Germany Survey Qualitative AYAs (99) Sexual
Heath

“examine ayas’ quality of
relationships and sexuality
satisfaction thereby
identifying sex
differences.”

awareness

Gittzus, J. A.
(2019)

Peace of mind among
adolescents and young
adults with cancer.

USA Interviews Qualitative AYAs (193) Quality of
life

Evaluate the extent to
which ayas with cancer
experience peace of mind
and to identify factors
associated with greater
peace of mind.

awareness

Gordon, L. M.
(2018)

Primary Care Physicians’
Decision Making
Regarding Initial
Oncology Referral for
Adolescents and Young
Adults With Cancer.

USA Survey Qualitative Professionals
(406)

Heatlh
system/
treatments

Determine whether
pediatricians are more
likely than other primary
care physicians (pcps) to
refer newly diagnosed
adolescent and young adult

awareness
(continued on next page)
C.M. Telles

Cancer Treatment and Research Communications 27 (2021) 100316

(continued )
First author
(year)
Title Country Study design Study type Focused
population
(with number)
Theme Purpose Purpose
category

patients with cancer to
pediatric oncological
specialists, and to assess the
physician and patient
characteristics that affect
patterns of referral.

Graetz, D.
(2019)

Things that matter:
Adolescent and young
adult patients’ priorities
during cancer care.

USA Survey Qualitative AYAs (203) Heatlh
system/
treatments

Investigate ayas’ priorities
during cancer

awareness

Gutiérrez-
Colina, A.
(2017)

Family functioning and
depressive symptoms in
adolescent and young
adult cancer survivors
and their families: a
dyadic analytic
approach.

USA Questionnaires
and Interviews

Qualitative AYAs (64) Quality of
life

Examine dyadic
relationships between
depressive symptoms and
family functioning in
families of pediatric cancer
survivors.

awareness

Hanghøj, S.
(2019)

Impact of Service User
Involvement from the
Perspective of
Adolescents and Young
Adults with Cancer
Experience.

Denmark Interview Qualitative AYAs (12) Heatlh
system/
treatments

To investigate the impact of
participating in service user
involvement initiatives
from the perspective of
AYA cancer patients and
AYA cancer survivors.

awareness

Hart, R. I.
(2020)

The challenges of making
informed decisions about
treatment and trial
participation following a
cancer diagnosis: a
qualitative study
involving adolescents
and young adults with
cancer and their
caregivers.

United
Kingdom

Interview Qualitative AYAs (18) and
Family (13)

Heatlh
system/
treatments

Understand and help
facilitate, informed
treatment-related decision-
making in this age group by
enterviews

Awareness

Hølge-
Hazelton, B.
(2016)

“Perhaps I will die
young.” Fears and
worries regarding disease
and death among Danish
adolescents and young
adults with cancer. A
mixed method study.

Denmark Questionnaires Qualitative AYAs (822) Quality of
life

Examine (Q1) to what
extend Danish ayas
experienced fears and
worries about dying; (Q2)
with whom, if anyone, they
had shared those worries;
and finally, (Q3) how fears
and worries influenced
their daily life. The
emphasis is on Q3.

awareness

Høybye, M. T.
(2018)

Virtual environments in
cancer care: Pilot-testing
a three-dimensional web-
based platform as a tool
for support in young
cancer patients.

Denmark Pilot study Qualitative AYAs (10) Quality of
life with
technology

Present the results of a pilot
study that tested an early
prototype of an online
virtual environment for
psychosocial support of
AYA cancer patients,
focusing on areas for
further development of the
environment. The pilot
study did not include or
evaluate an actual
intervention component at
this time.

action

Hughes, R. E.
(2015)

Prevalence and intensity
of pain and other
physical and
psychological symptoms
in adolescents and young
adults diagnosed with
cancer on referral to a
palliative care service.

Australia Retrospective
cohort study –
Medical records

Qualitative AYAs (33) Heatlh
system/
treatments

Identify the prevalence,
severity, and mechanism of
pain and other symptoms in
AYA patients referred to a
palliative care service in a
specialist Australian cancer
center.

awareness

Husson, O.
(2017)

Cancer in adolescents
and young adults: who
remains at risk of poor
social functioning over
time?

USA Longitudinal
study – Inventory

Qualitative AYAs (215) Social issues To examine social
functioning among
adolescents and young
adults (ayas) within the
first 2 years after a cancer
diagnosis and compare
their scores with
population norms and
identify trajectories of

awareness
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Cancer Treatment and Research Communications 27 (2021) 100316

(continued )
First author
(year)
Title Country Study design Study type Focused
population
(with number)
Theme Purpose Purpose
category

social functioning over time
and its correlates.

Hydeman, J.
A. (2019)

Survivorship needs of
adolescent and young
adult cancer survivors: a
concept mapping
analysis.

USA Focus group Qualitative AYAs (27) Heatlh
system/
treatments

To explore the survivorship
concerns through a concept
mapping analysis.

awareness

Ishibashi, A.
(2016)

Psychosocial strength
enhancing resilience in
adolescents and young
adults with cancer.

Japan Interviews Qualitative AYAs (18) Quality of
life

Explore ways of enhancing
psychosocial strengths in
newly diagnosed and
relapsed adolescents and
young adults (ayas) to
improve their resilience.

awareness

Jacob, S. A.
(2017)

No improvement in
clinical trial enrollment
for adolescents and
young adults with cancer
at a children’s hospital.

USA Documental –
cancer registry
data at the
Children’s
Hospital of
Pittsburgh (CHP) –
2010–2014

Qualitative – Heatlh
system/
treatments

Determine if the
enrollment of AYA
patients on therapeutic
studies at the same
institution has improved in
recent years with the
greater focus on this
population locally and
nationally.

awareness

Jacobsen, S. K.
(2015)

Experiences of “being
known” by the
healthcare team of young
adult patients with
cancer.

Quebec Interviews Qualitative AYAs (13) Quality of
life

Explore how ayas are being
known by their healthcare
team.

awareness

Jayasuriya, S.
(2019)

Satisfaction,
disappointment and
regret surrounding
fertility preservation
decisions in the pediatric
and adolescent cancer
population.

Australia Survey Qualitative AYAs (30) and
Family (110)

Sexual
Heath

Investigate the risk of
decision regret in families
involved in making a FP
decision and explored
contributive factors.

awareness

Kaal, S. E.
(2016)

Experiences of parents
and general practitioners
with end-of-life care in
adolescents and young
adults with cancer.

Netherlands Questionnaire and
Interview

Qualitative Family (15)
and
Professionals
(9)

Heatlh
system/
treatments

Analyze the experiences of
Dutch bereaved parents
and general practitioners
(gps) with palliative care of
ayas (18–35 years) in the
terminal stage.

awareness

Kaal, S. E.
(2018)

Online support
community for
adolescents and young
adults (AYAs) with
cancer: user statistics,
evaluation, and content
analysis.

Netherlands Documental and
Questionnaires

Qualitative AYAs (30 and
433 medical
records)

Quality of
life with
technology

Describe the use and
evaluation of a Dutch
secure online support
community for AYA
diagnosed with cancer
between 18 and 35 years.

action

Kaul, S.
(2016)

Health care experiences
of long-term survivors of
adolescent and young
adult cancer.

USA Survey Qualitative AYAs (1163) Heatlh
system/
treatments

Evaluate health care access
and experiences with care
among long-term survivors
of adolescent and young
adult (AYA) cancer relative
to a comparison group in
the USA.

post

Kay, J. S.
(2019)

Support and conflict in
relationships and
psychological health in
adolescents and young
adults with cancer.

USA Survey Qualitative AYAs (115) Quality of
life

Understand associations
between perceived support
and conflict with primary
caregivers, other family,
close friends, and medical
staff, and four measures of
psychological health (PD,
PTSS, PA, and PTG) among
ayas in outpatient cancer
treatment.

awareness

Keegan, T. H.
(2018)

Sociodemographic
disparities in the
occurrence of medical
conditions among
adolescent and young
adult Hodgkin
lymphoma survivors.

USA Retrospective
cohort study –
Medical records

Qualitative AYAs (5.085) Social issues Hodgkin lymphoma (HL)
survivors experience high
risks of second cancers and
cardiovascular disease and
this study have aimed to
consider whether the
occurrence of these and
other medical conditions
differ by sociodemographic
factors in adolescent and

awareness
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Cancer Treatment and Research Communications 27 (2021) 100316

(continued )
First author
(year)
Title Country Study design Study type Focused
population
(with number)
Theme Purpose Purpose
category

young adult (AYA)
survivors.

Keegan, T. H.
(2018)

Cardiovascular disease
incidence in adolescent
and young adult cancer
survivors: a retrospective
cohort study.

USA Retrospective
cohort study –
Medical records

Qualitative AYAs (79.176) Social issues Determiningwhether the
occurrence of CVD differs
by sociodemographic
factors among AYA cancer
survivors will allow us to
identify those patients at
increased risk of poor
outcomes and inform
strategies to enhance long-
term surveillance and care.

awareness

Kirchhoff, A.
C. (2017)

Supporting adolescents
and young adults with
cancer: oncology
provider perceptions of
adolescent and young
adult unmet needs.

USA Survey Qualitative Professionals
(91)

Heatlh
system/
treatments

Identify oncology provider
perceptions of ayas Unmet
Needs and knowledge
about best practices to have
with ayas

awareness

Kleinke, A. M.
(2018)

Adolescents and young
adults with cancer:
aspects of adherence–a
questionnaire study.

Germany Questionnaire Qualitative AYAs (343) Heatlh
system/
treatments

Analyze the adherence of
ayas with cancer compared
to a group of older patients
and, second, to determine
correlated parameters, with
focus on the psychosocial
interaction between
physicians and patients.

awareness

Knox, M. K.
(2017)

Lost and stranded: the
experience of younger
adults with advanced
cancer.

Canadá Interviews Qualitative AYAs (10) Quality of
life

Understand the experience
of younger adults with
advanced cancer.

awareness

Korsvold, L.
(2016)

Patient-provider
communication about
the emotional cues and
concerns of adolescent
and young adult patients
and their family
members when receiving
a diagnosis of cancer.

Norway Recorded
consultations

Qualitative AYAs (9) Quality of
life

Examine how emotional
cues/concerns are
expressed and responded to
in medical consultations
with adolescent and young
adults at the time of
diagnosis

awareness

Korsvold, L.
(2017)

A content analysis of
emotional concerns
expressed at the time of
receiving a cancer
diagnosis: An
observational study of
consultations with
adolescent and young
adult patients and their
family members.

Norway Retrospective
cohort study –
Recorded
Consultations

Qualitative AYAs (9) Quality of
life

Investigate the content of
the AYA’s concerns about
their diagnosis- identified
in a preview research

awareness

Kosola, S.
(2018)

Early education and
employment outcomes
after cancer in
adolescents and young
adults.

Australia Survey Qualitative AYAs (196) Social issues Describe the early
educational and vocational
outcomes of Australian
adolescents and young
adults (ayas) after cancer
diagnosis and examines
factors associated with
these outcomes.

awareness

LaRosa, K. N.
(2019)

Provider perceptions’ of
a patient navigator for
adolescents and young
adults with cancer.

USA Interview Qualitative Professionals
(17)

Heatlh
system/
treatments

Assessing staff perceptions
of (a) barriers to optimal
care for AYA, (b) roles and
responsibilities for a
patient navigator, and (c)
training needed for future
patient navigators.

awareness

Lavender, V.
(2019)

Health professional
perceptions of
communicating with
adolescents and young
adults about bone cancer
clinical trial
participation.

United
Kingdom

Interview Qualitative Professionals
(18)

Heatlh
system/
treatments

Research to date does not
adequately explain all
underlying reasons for poor
trial accrual. This paper
reports health
professional perceptions
of communicating with
adolescents and young
adults with bone sarcoma
about clinical trial
participation.

awareness
(continued on next page)
C.M. Telles

Cancer Treatment and Research Communications 27 (2021) 100316

(continued )
First author
(year)
Title Country Study design Study type Focused
population
(with number)
Theme Purpose Purpose
category

Li, C. K.
(2019)

Care of adolescents and
young adults with cancer
in Asia: results of an
ESMO/SIOPE/SIOP Asia
survey.

Asia (first
author:
chinese)

Survey Qualitative Hospitals
(268)

Heatlh
system/
treatments

Assess AYA cancer care
across Asia.

Awareness

Lin, M. (2017) Health literacy in
adolescents and young
adults: perspectives from
Australian Cancer
Survivors.

Australia Interview Qualitative AYAs (40) Heatlh
system/
treatments

Explore health literacy in
Australian cancer survivors
within the AYA age group
either at diagnosis or
interview.

Awareness

Linder, L. A.
(2017)

Symptom self-
management strategies
reported by adolescents
and young adults with
cancer receiving
chemotherapy.

Germany Cohort study –
Computerized
Symptom Capture
Tool.

Quanti-
Quali

AYAs (72) Heatlh
system/
treatments

Describe symptom self-
management strategies
reported by ayas with
cancer

awareness

Linder, L. A.
(2019)

Oral medication
adherence among
adolescents and young
adults with cancer before
and following use of a
smartphone-based
medication reminder
app.

USA Intervention and
Questionnaires

Qualitative AYAs (23) Heatlh
system/
treatments
with
technology

Evaluate oral medication
adherence among
adolescents and yo ung
adults (ayas) with cancer
during a trial of a
smartphone-based
medication reminder
application (app).”

action

Mack, J. W.
(2018)

Communication about
prognosis with
adolescent and young
adult patients with
cancer: information
needs, prognostic
awareness, and outcomes
of disclosure.

USA Survey Qualitative AYAs (203) Heatlh
system/
treatments

Evaluate experiences with
prognosis communication
among adolescents and
young adults (ayas) with
cancer.

awareness

Mack, J. W.
(2019)

Adolescent and Young
Adult Cancer Patients’
Experiences With
Treatment Decision-
making.

USA Survey Qualitative AYAs (305) Heatlh
system/
treatments

Evaluate cancer treatment
decision- making among
ayas, including decisional
engagement and regret.

post

Martins, H. T.
(2018)

Who cares for
adolescents and young
adults with cancer in
Brazil?.

Brazil Retrospective
cohort study –
Hospitals
registries
(2007–2011)

Qualitative Hospitals
(271)

Heatlh
system/
treatments

Evaluate exactly where
adolescents and young
adults with cancer are
treated in Brazil.

awareness

May, E. A.
(2018)

Adolescent and young
adult cancer survivors’
experiences of the
healthcare system: a
qualitative study.

Australia Interview Qualitative AYAs (42) Heatlh
system/
treatments

To qualitatively examine
the experiences of diagnosis
and treatment, and
attitudes toward ongoing
healthcare of adolescent
and young adult (AYA)
survivors of AYA cancer, to
determine barriers to
healthcare engagement in
the early survivorship
period.

post

McCarthy, M.
C. (2016)

Psychological distress
and posttraumatic stress
symptoms in adolescents
and young adults with
cancer and their parents.

Australia Questionnaires
and Survey

Qualitative AYAs (196)
and Family
(204)

Quality of
life

Investigate the prevalence
and predictors of
psychological distress in
adolescent and young adult
(AYA) cancer patients and
their parent caregivers.

awareness

McDonald, F.
E. (2015)

Predictors of unmet
needs and psychological
distress in adolescent and
young adult siblings of
people diagnosed with
cancer.

Australia Questionnaires Qualitative Family (106) Quality of
life

Predictors of psychological
distress and unmet needs
amongst adolescents and
young adults (ayas) who
have a brother or sister
diagnosed with cancer were
examined.

awareness
McDonald, F.
E. (2015)

Evaluation of a resource
for adolescents and
young adults diagnosed
with cancer.

Australia Questionnaires Qualitative AYAs (46) Heatlh
system/
treatments

Evaluate a book for ayas
diagnosed with cancer, in
particular to assess
satisfaction, changes in
perceived knowledge and
coping, the impact of health
literacy (HL) on perceived
knowledge, and the impact

post
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(continued )
First author
(year)
Title Country Study design Study type Focused
population
(with number)
Theme Purpose Purpose
category

of the book on distress
levels.

McDonnell, G.
A.(2018)

A qualitative study of
adolescent and young
adult cancer survivors’
perceptions of family and
peer support.

USA Interview Qualitative AYAs (26) Quality of
life

Examine adolescent and
young adult survivors’
perceptions of support from
family and peers.

awareness

McGrady, M.
E. (2017)

Spending on hospital
care and pediatric
psychology service use
among adolescents and
young adults with
cancer.

USA Documental –
billing data

Qualitative AYAs (96) Quality of
life

Examine the relationship
between need-based
pediatric psychology
service use and spending on
hospital care among
adolescents and young
adults (ayas) with cancer.

awareness

McNeil, R.
(2019)

The changing nature of
social support for
adolescents and young
adults with cancer.

Australia Interviews Qualitative AYAs (60) Quality of
life

Explore adolescent and
young adult (AYA)
experiences and
preferences for social
support early within the
continuum of cancer
treatment.

awareness

McNeil, R. J.
(2019)

Financial challenges of
cancer for adolescents
and young adults and
their parent caregivers.

Australia Survey Qualitative AYAs (196)
and Family
(204)

Social issues Examined the financial
impact of cancer and the
use of income support in
adoles- cents and young
adults (ayas) with cancer
and their parent caregivers.

awareness

McVeigh, T. P.
(2018)

The role of genomic
profiling in adolescents
and young adults (AYAs)
with advanced cancer
participating in phase I
clinical trials.

United
Kingdom

Retrospective
cohort study –
medical records

Quanti-
Qualitative

AYAs (219) Heatlh
system/
treatments

To investigate the use and
impact of: 1. Germline
genetic assessment. 2.
tumor molecular profiling.

awareness

Medlow, S.
(2015)

Determining research
priorities for adolescent
and young adult cancer
in Australia.

Australia Survey Qualitative AYAs (26) and
Professionals
(75)

Heatlh
system/
treatments

Determining research
priorities for ayas with
cancer was undertaken
utilizing three
complementary
approaches: stakeholder
consultations, a systematic
literature review and a
large- scale online survey of
professional and consumer
perspec- tives. This paper
reports on the survey.

awareness

Mitchell, L.
(2018)

Measuring the impact of
an adolescent and young
adult program on
addressing patient care
needs.

Canada Survey Qualitative AYAs (239) Heatlh
system/
treatments

Evaluate the effectiveness
of an adult-based
adolescent and young adult
(AYA) cancer program by
assessing patient
satisfaction and whether
programming offers added
incremental benefit beyond
primary oncology providers
(POP) to address their
needs.

post

Morrison, C. F.
(2018)

Facilitators and barriers
to self-management for
adolescents and young
adults following a
hematopoietic stem cell
transplant.

USA Interview Quanti-
Quali

AYAs (17) and
Professionals
(13)

Heatlh
system/
treatments

Address the knowledge gap
by pre-senting facilitators
of and barriers to AYA self-
management following an
HSCT, based on evidence
from a grounded theory
research study.

Awareness

Muffly, L. S.
(2016)

Psychological
morbidities in adolescent
and young adult blood
cancer patients during
curative-intent therapy
and early survivorship.

USA Questionnaires
and Survey

Qualitative AYAs (61) and
Professionals
(15)

Quality of
life

Describing the prevalence
of psychological
morbidities among ayas
with hematologic
malignancies during
curative-intent therapy and
early survivorship and at
examining provider
perceptions of
psychological morbidities
in their AYA patients.

awareness
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C.M. Telles

Cancer Treatment and Research Communications 27 (2021) 100316

(continued )
First author
(year)
Title Country Study design Study type Focused
population
(with number)
Theme Purpose Purpose
category

Murnane, A.
(2015)

Adolescents and young
adult cancer survivors:
exercise habits, quality of
life and physical activity
preferences.

Australia Questionnaires Qualitative AYAs (74) Quality of
life

Explore the exercise
programming preferences
and information needs of
AYA survivors and to
examine the impact of a
cancer diagnosis on
physical activity behavior
and qol.

awareness
Murnane, A.
(2015)
Adolescents and young
adult cancer survivors:
exercise habits, quality of
life and physical activity
preferences.
Australia Questionnaires Qualitative AYAs (74) Quality of
life
Explore the exercise
programming preferences
and information needs of
AYA survivors and to
examine the impact of a
cancer diagnosis on
physical activity behavior
and qol.
awareness

Murray, A. N.
(2016)

Adolescents and Young
Adults With Cancer:
Oncology Nurses Report
Attitudes and Barriers to
Discussing Fertility
Preservation.

United
Kingdom

Survey Qualitative Professionals
(116)

Heatlh
system/
treatments

To assess oncology nurses’
recommendations for
patients to consider
Fertility Preservation
options and to explore what
patienrelated factors may
influence discussion of FP
with ayas with cancer.

awareness

Mütsch, J.
(2019)

Sexuality and cancer in
adolescents and young
adults-a comparison
between reproductive
cancer patients and
patients with non-
reproductive cancer

Germany Questionnaires Qualitative AYAs (577) Sexual
Heath

Examine sexual satisfaction
and sexual supportive care
needs among adolescent
and young adult cancer
patients, with a particular
focus on how the type of
cancer a person has is
associated with these issues
differently.

awareness

Pappot, H.
(2019)

Health-related quality of
life before and after use
of a smartphone app for
adolescents and young
adults with cancer: pre-
post interventional study.

Denmark Pre-post Qualitative AYAs (20) Quality of
life with
technology

To investigate the
feasibility of a smartphone
app among AYA patients
with cancer in active
treatment and
posttreatment, in a pilot
test by measuring health-
related quality of life before
and after the use of the app.

action

Parsons, H. M.
(2015)

Who treats adolescents
and young adults with
cancer? A report from the
AYA HOPE Study.

USA Documental –
National Cancer
Institute’s
population-based
AYA HOPE Study

Qualitative AYAs (464)
and
Professionals
(903)

Heatlh
system/
treatments

Discover when there’s no
AYA cancer medical
specialty, where and by
whom ayas with cancer are
treated.

awareness

Patterson, P.
(2015)

“Being Mindful” Does it
Help Adolescents and
Young Adults Who Have
Completed Cancer
Treatment?.

Australia Questionnaires Qualitative AYAs (76) Quality of
life

Examine whether a mindful
dispositional trait was
associated with better
adaptive outcomes for
these young people.

awareness

Peavey, M.
(2017)

On-site fertility
preservation services for
adolescents and young
adults in a
comprehensive cancer
center.

USA Retrospective
cohort study –
Medical records

Qualitative AYAs (154) Heatlh
system/
treatments

Define the AYA patient
population referred to an
on-site fertility consultation
service within a
comprehensive cancer
center and determine
factors associated with
patients proceeding with FP
treatment.

Awareness

Phillips, C. R
(2020)

Like Prisoners in a War
Camp: Adolescents and
Young Adult Cancer
Survivors’ Perspectives
of Disconnectedness
From Healthcare
Providers During Cancer
Treatment.

USA Interviews Qualitative AYAs (9) Quality of
life

Describe AYA cancer
survivors experiences of
disconnectedness from hcps
during cancer treatment.

awareness

Phillips, C. R.
(2017)

Connecting with
healthcare providers at
diagnosis: adolescent/
young adult cancer
survivors’ perspectives.

USA Interviews Qualitative AYAs (8) Quality of
life

Describe AYA cancer
survivors’ experiences
connecting with hcps

awareness
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(continued )
First author
(year)
Title Country Study design Study type Focused
population
(with number)
Theme Purpose Purpose
category

Poort, H.
(2017)

Prevalence and impact of
severe fatigue in
adolescent and young
adult cancer patients in
comparison with
population-based
controls.

Netherlands Questionnaire Qualitative AYAs (83) Heatlh
system/
treatments

Determine the prevalence
of severe fatigue in
adolescent and young adult
(AYA) cancer patients
(aged 18–35 years at
diagnosis) consulting a
multidisciplinary AYA team
in comparison with gender-
and age-matched popu-
lation-based controls. ///
examine the impact of
severe fatigue on quality of
life and correlates of fatigue
severity

awareness

Reblin, M.
(2019)

Family dynamics in
young adult cancer
caregiving:“It should be
teamwork”.

USA Interviews Qualitative AYAs (15) and
Family(9)

Quality of
life

Provide insight into the
expectations young adult
patients and their family
caregivers for types of
psychosocial support.

awareness

Ricadat, É.
(2019)

Adolescents and young
adults with cancer: How
multidisciplinary health
care teams adapt their
practices to better meet
their specific needs.

France Interview Qualitative Professionals
(31)

Heatlh
system/
treatments

Identify and describe the
practical methods of care
and teamwork
implemented by hcps in
response to what they
perceive as essential to
support psychosocial
development of AYA
patients.

Awareness

Richter, D.
(2019)

Health literacy in
adolescent and young
adult cancer patients and
its association with
health outcomes.

Germany Survey Qualitative AYAs (206) Heatlh
system/
treatments

Examined the frequency of
health literacy (HL) in
adolescents and young
adult (AYA) cancer patients
and the factors associated
with HL

awareness

Robertson, E.
G.(2016)

Sexual and romantic
relationships:
experiences of adolescent
and young adult cancer
survivors.

Australia Interview Qualitative AYAs (43) Sexual
Heath

Examine the quality and
satisfaction of sexual/
romantic relationships of
adolescents/young adults
(ayas) who recently
completed cancer
treatment.

awareness

Rosenberg, A.
R. (2018)

Hope, distress, and later
quality of life among
adolescent and young
adults with cancer.

USA Survey Qualitative AYAs (37) and
Family (40)

Quality of
life

Explore the predictive
value of screening for
distress alone, hope alone,
or a combination of both.

awareness

Rosenberg, A.
R.(2015)

Insurance status and risk
of cancer mortality
among adolescents and
young adults.

USA Retrospective
cohort study –
Medical records

Qualitative AYAs (57.981) Social issues To identify associations
between insurance status
and both advanced-stage
cancer and cancer-specific
mortality.

awareness

Roth, M. E.
(2016)

Low enrollment of
adolescents and young
adults onto cancer trials:
insights from the
community clinical
oncology program.

USA Retrospective
cohort study –
eletronic helth
records

Qualitative AYAs (17.963) Heatlh
system/
treatments

Investigate if Community
Clinical Oncology Program
(CCOP) sites enrolled
proportionately more ayas
than non-CCOP sites onto
Children’s Oncology Group
(COG) trials.

post

Saita, E.
(2019)

Evaluating the Framed
Portrait Experience as an
Intervention to Enhance
Self-Efficacy and Self-
Esteem in a Sample of
Adolescent and Young
Adult Cancer Survivors:
Results of a Pilot Study.

Italy Pilot study Qualitative AYAs (18) Quality of
life

Investigate the Framed
Portrait Experience (FPE)
as an intervention
topromote well-being
among AYA cancer
survivors.

action

Saloustros, E.
(2017)

The care of adolescents
and young adults with
cancer: results of the
ESMO/SIOPE survey.

Europe (first
author:
greek)

Survey Qualitative Professionals
(266)

Heatlh
system/
treatments

Know about the training
and practice of European
healthcare providers in
regard to AYA and the
availability of specialised
services.

Awareness

Sanford, S. D.
(2017)

Clinical research
participation among
adolescent and young

USA Retrospective
cohort study –
medical records

Qualitative AYAs (208) Heatlh
system/
treatments

Examine the current state
of clinical trial enrollment
of ayas at a major adult-

post
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Cancer Treatment and Research Communications 27 (2021) 100316
16
(continued )
First author
(year)
Title Country Study design Study type Focused
population
(with number)
Theme Purpose Purpose
category

adults at an NCI-
designated
Comprehensive Cancer
Center and affiliated
pediatric hospital.

based comprehensive
cancer center and pediatric
affiliate in the USA as a
means to advise program
development and methods
for tailoring existing
innovations, ultimately
increasing the availability
of trials and study partic-
ipation of ayas at these
institutions.

Sansom-Daly,
U. M.
(2015)

Ethical and clinical
challenges delivering
group-based cognitive-
behavioural therapy to
adolescents and young
adults with cancer using
videoconferencing
technology.

Australia Retrospective
cohort study –
medical records

Qualitative AYAs (11) Quality of
life

Discuss the Recapture Life
randomised controlled
trial, which involved
online, videoconferencing-
based delivery of group-
based cognitive
behavioural therapy to
adolescents and young
adults aged 15–25 years in
the first year post-
treatment. Ethical
challenges”

post

Sansom-Daly,
U. M.
(2019)

Feasibility, acceptability,
and safety of the
Recapture Life
videoconferencing
intervention for
adolescent and young
adult cancer survivors.

Australia Pilot study Qualitative AYAs (45) Quality of
life with
technology

Establish the feasibility,
acceptability, and safety of
Recapture life, a six-session
group-based online
cognitive-behavioural
intervention, led by a
facilitator, for ayas in the
early post-treatment
period.

action

Sawyer, S. M.
(2016)

Fulfilling the vision of
youth-friendly cancer
care: a study protocol.

Australia Survey Qualitative AYAs (196)
and Family
(204)
Quality of
life

Develop an evidence-
informed model of cancer
care for this age group

awareness

Sawyer, S. M.
(2019)

Developmentally
appropriate care for
adolescents and young
adults with cancer: how
well is Australia doing?.

Australia Survey Qualitative AYAs (196) Heatlh
system/
treatments

Describe how well
Australian cancer services
deliver patient-focussed,
developmentally
appropriate care to
adolescents and young
adults (ayas) with cancer.

post

Sender, A.
(2019)

Unmet supportive care
needs in young adult
cancer patients:
associations and changes
over time.

Germany Survey Qualitative AYAs (514) Heatlh
system/
treatments

Examine unmet supportive
care needs and to
investigate predictors of
and changes in unmet
needs over time.

awareness

Shay, L. A.
(2017)

Survivorship care
planning and unmet
information and service
needs among adolescent
and young adult cancer
survivors.

USA Retrospective
cohort study –
survey records

Qualitative AYAs (1395) Heatlh
system/
treatments

Examine whether
survivorship care planning
(receipt of written
treatment summary or
instructions for follow-up
care) is associated with
unmet needs among
adolescent and young adult
(AYA) cancer survivors
(aged 15–39 at diagnosis).

awareness

Shirazee, N.
(2016)

Patterns in Clinical Trial
Enrollment and
Supportive Care Services
Provision Among
Adolescents and Young
Adults Diagnosed with
Having Cancer During
the Period 2000–2004 in
Western Australia.

Australia Retrospective
cohort study –
medical records

Qualitative AYAs (383) Heatlh
system/
treatments

Examine Support services
provision and clinical trial
enrollment

post

Skaczkowski,
G. (2018)

Factors influencing the
documentation of
fertility-related
discussions for
adolescents and young
adults with cancer.

Australia Retrospective
cohort study –
Medical records

Qualitative AYAs (941) Heatlh
system/
treatments

Examine the rate of medical
record documentation of
fertility-related discussions
and fertility preservation
(FP) procedures for
adolescents and young
adults (ayas) with cancer in
Australia.

awareness
(continued on next page)
C.M. Telles

Cancer Treatment and Research Communications 27 (2021) 100316

(continued )
First author
(year)
Title Country Study design Study type Focused
population
(with number)
Theme Purpose Purpose
category

Skaczkowski,
G.(2018)

Factors influencing the
provision of fertility
counseling and impact on
quality of life in
adolescents and young
adults with cancer.

Australia Survey Qualitative AYAs (207) Sexual
Heath

Investigate the impact of
fertility-related discussions
on Adolescent and Young
Adult (AYA) cancer
patients’ quality of life
(qol) and the factors
influencing provision of
these discussions.

awareness
Skaczkowski,
G.(2018)

Do Australian
adolescents’ and young
adults’ experiences of
cancer care influence
their quality of life?

Australia Survey Qualitative AYAs (209) Quality of
life

Examine the relationship
between the cancer care
experiences of
adolescentsand young
adults (ayas) and their
quality of life.

awareness

Smith, A.
(2019)

ReActivate—A Goal-
Orientated
Rehabilitation Program
for Adolescent and Young
Adult Cancer Survivors.

Australia Prospective
(single-site)
cohort study

Qualitative AYAs
survivors (35)

Quality of
life

Evaluate the feasibility and
acceptability of reactivate,
an 8-week, group-based,
goal-orientated
rehabilitation program for
AYA cancer survivors.

action

Smits-
Seemann, R.
R. (2017)

Barriers to follow-up care
among survivors of
adolescent and young
adult cancer.

USA Focus group Qualitative AYAs (28) Heatlh
system/
treatments

Understand whether
additional barriers to
follow-up care exist for
AYA survivors.

awareness

Spathis, A.
(2017)

Cancer-related fatigue in
adolescents and young
adults after cancer
treatment: persistent and
poorly managed.

United
Kingdom

Survey Quanti-
Quali

AYAs (80) Heatlh
system/
treatments

Quantify the impact of
fatigue on young patients
and their carers, to find out
how fatigue is currently
being managed in the
United Kingdom, and to
ascertain perceptions of the
effectiveness of such
management.

post

Spraker-
Perlman, H.
(2018)

Statewide Treatment
Center Referral Patterns
for Adolescent and Young
Adult Patients with
Cancer in Utah.

USA Retrospective
cohort study –
Medical records

Qualitative AYAs (5032) Heatlh
system/
treatments

Determine where AYA
cancer patients received
primary therapy.

awareness

Steineck, A.
(2019)

A Psychosocial
Intervention’s Impact on
Quality of Life in AYAs
with Cancer: A Post Hoc
Analysis from the
Promoting Resilience in
Stress Management
(PRISM) Randomized
Controlled Trial.

USA Retrospective
cohort study –
Medical records

Qualitative AYAs (99) Quality of
life

This post hoc exploratory
analysis aimed to better
understand the effect of
PRISM on HRQOL by
describing changes in
HRQOL subdomain scores.

post

Sun, H. (2019) Fear of cancer
recurrence, anxiety and
depressive symptoms in
adolescent and young
adult cancer patients.

China Questionnaires Qualitative AYAs (249) Quality of
life

Explore the prevalence and
correlate of FCR, anxiety
and depressive symptoms
in Chinese AYA cancer
population.

awareness

Thewes, B.
(2018)

Prevalence and correlates
of high fear of cancer
recurrence in late
adolescents and young
adults consulting a
specialist adolescent and
young adult (AYA)
cancer service.

Netherlands Questionnaires
and scales

Qualitative AYAs
survivors (73)

Quality of
life

Explore the prevalence,
correlates of high Fear of
Cancer Recurrence, and its
association with hrqol in
cancer patients in their late
adolescence or young
adulthood.

awareness

Thompson, C.
M. (2016)

Understanding how
adolescents and young
adults with cancer talk
about needs in online and
face-to-face support
groups.

USA Documental and
Support groups

Quanti-
Quali

AYAs (569 and
360
documents)

Quality of
life with
technology

To determine how talk
about needs differs online
versus face-to- face.

awareness

Tindle, D.
(2019)

Centralizing temporality
in adolescent and young
adult cancer
survivorship.

Australia Interviews Qualitative AYAs (45) Heatlh
system/
treatments

Explore the phenomenon of
cancer survivorship as
experienced by ayas
diagnosed with cancer in
Australia, England, and the
United States.

awareness

Tremolada, M.
(2018)

Adolescent and young
adult cancer survivors

Italy Interviews Qualitative AYAs (1000) Quality of
life

Examine the perceived
personal growth and daily

awareness
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C.M. Telles

Cancer Treatment and Research Communications 27 (2021) 100316

(continued )
First author
(year)
Title Country Study design Study type Focused
population
(with number)
Theme Purpose Purpose
category

narrate their stories:
Predictive model of their
personal growth and
their follow-up
acceptance.

routines of adolescent and
young adult childhood
cancer survivors using a
narrative approach based
on an ecocultural
framework; (2) examine the
extent to which cancer-
related factors (age at
diagnosis, time since
diagnosis, cancer diagnosis
type), key
sociodemographic
variables (gender, age at
the assessment, education
status, presence of a long-
term partner) and
psychosocial factors (social
support, relationships with
health staff) predict the
likelihood of young adult
survivors’ attributing
positive outcomes to
having had cancer; and (3)
identify the factors that
could somehow increase
the acceptance and the
level of tranquility
experienced by the
survivors towards follow-
up visits.

Vetsch, J.
(2018)

Educational and
vocational goal
disruption in adolescent
and young adult cancer
survivors.

Australia Interview Qualitative AYAs (42) Social issues To report on AYA cancer
survivors’ experiences of
reintegration into school
and/or work and to
describe perceived changes
in their educational and
vocational goals.

awareness

Walsh, C.
(2019)

Shifting needs and
preferences: supporting
young adult cancer
patients during the
transition from active
treatment to survivorship
care.

USA Interview Qualitative AYAs (13) Heatlh
system/
treatments

Identify and explore the
social support needs and
preferences of young adult
cancer patients during the
transition process from
active treatment to
survivorship care.

awareness

Warner, E. L.
(2016)

Health behaviors, quality
of life, and psychosocial
health among survivors
of adolescent and young
adult cancers.

USA Survey Qualitative AYAs (7619) –
control group
with 334.759

Quality of
life

Asses health behaviors and
constructs including quality
of life (QOL) and
psychosocial well-being
among survivors of AYA
cancer compared to the
general population.

awareness

Warner, E. L.
(2018)

Patient navigation
preferences for
adolescent and young
adult cancer services by
distance to treatment
location.

USA Interview Qualitative AYAs (39) Heatlh
system/
treatments

Describe how distance to
treatment location
influences patient
navigation preferences for
ado- lescent and young
adult (AYA) cancer patients
and survivors.

awareness

Wasilewski-
Masker, K.
(2016)

Adolescent and young
adult perceptions of
cancer survivor care and
supportive
programming.

USA Survey Qualitative AYAs (157) Heatlh
system/
treatments

Conduct a program
evaluation to identify ayas’
perceptions of survivor care
services.

post

Watson, A.
(2019)

Interdisciplinary
communication:
documentation of
advance care planning
and end-of-life care in
adolescents and young
adults with cancer.

USA Retrospective
cohort study –
eletronic helth
records

Qualitative AYAs (30) Heatlh
system/
treatments

Assess the Eletonic Health
Record of a large tertiary
care pediatric hospital for
inclusion of discussions
about goals of care and
details about preferences
and the actual care
delivered at End of Life

post

Wettergren, L.
(2017)

Cancer negatively
impacts on sexual
function in adolescents

USA Cohort study –
Survey

Qualitative AYAs (465) Sexual
Heath

Examine the impact of
cancer on sexual function
and intimate relationships

awareness
(continued on next page)
C.M. Telles

Cancer Treatment and Research Communications 27 (2021) 100316

(continued )
First author
(year)
Title Country Study design Study type Focused
population
(with number)
Theme Purpose Purpose
category

and young adults: the
AYA HOPE study.

in adolescents and young
adults (ayas) and explore
the factors predicting an
increased likelihood that
cancer had negatively
affected these outcomes.

White, V.
(2018)

Experiences of care of
adolescents and young
adults with cancer in
Australia.

Australia Survey Qualitative AYAs (207) Heatlh
system/
treatments

Examine the care
experiences of Australian
Adolescents and Young
Adults (ayas) with cancer
during a period when youth
cancer services (YCS) were
developing across the
country.

post

Wiklander, M.
(2017)

Feasibility of a self-help
web-based intervention
targeting young cancer
patients with sexual
problems and fertility
distress.

Sweden Participatory
research –
education
meetings, forum
discussion and
telephone
consultations

Qualitative AYAs (23) Sexual
Heath and
technology

“To evaluate the feasibility
of a self-help web-based
intervention to alleviate
sexual problems and
fertility distress in
adolescents and young
adults with cancer.”

action

Wu, X. C.
(2015)

Impact of the AYA HOPE
comorbidity index on
assessing health care
service needs and health
status among adolescents
and young adults with
cancer.

USA Survey and
madical records

Qualitative AYAs (485) Heatlh
system/
treatments

Assess impact of
comorbidities on health
care service needs and
health status among AYA
cancer survivors using the
newly developed AYA
HOPE comorbidity index in
comparison with the
existing indices.

action

Wu, Y. P.
(2018)

Use of a Smartphone
Application for
Prompting Oral
Medication Adherence
Among Adolescents and
Young Adults With
Cancer.

USA Pre-post Qualitative AYAs (23) Heatlh
system/
treatments
with
technology

Explore the feasibility and
acceptability of use of a
smartphone medication
reminder application to
promote adherence to oral
medications among
adolescents and young
adults (ayas) with cancer.

action

Wurz, A.
(2019)

Exploring the feasibility
and acceptability of a
mixed-methods pilot
randomized controlled
trial testing a 12-week
physical activity
intervention with
adolescent and young
adult cancer survivors.

Canada Pilot study Qualitative

AYAs (16) Quality of
life

A pilot study exploring the
feasibility and acceptability
of a physical activity
intervention and proposed
trial methods to inform a
definitive randomized
controlled trial (RCT) is
therefore necessary to fill
this gap.

action
Wurz, A.
(2019)
Exploring the feasibility
and acceptability of a
mixed-methods pilot
randomized controlled
trial testing a 12-week
physical activity
intervention with
adolescent and young
adult cancer survivors.

Canadá Pilot study Quanti-
Quali

AYAs (16) Quality of
life
A pilot study exploring the
feasibility and acceptability
of a physical activity
intervention and proposed
trial methods to inform a
definitive randomized
controlled trial (RCT) is
therefore necessary to fill
this gap.
action

Xie, J. (2017) A prevalence study of
psychosocial distress in
adolescents and young
adults with cancer.

China Questionnaires Qualitative AYAs (551) Quality of
life

Investigate the prevalence
of psychological distress in
Chinese ayas with cancer
and examine the
associations among
distress, anxiety and
depression, medical coping,
and social support in the
same population.

awareness

Yurkiewicz, I.
R. (2018)

Effect of Fitbit and iPad
wearable technology in
health-related quality of
life in adolescent and
young adult cancer
patients.

USA Pre-post Qualitative AYAs (33) Quality of
life with
technology

Investigate whether the use
of digital wearable
technology (Fitbits, along
with synced ipads) can
affect health-related quality
of life (HRQOL) in AYA
aged patients with cancer.

action

C.M. Telles

Cancer Treatment and Research Communications 27 (2021) 100316

Appendix B

Summary of 22 Theoretical Studies

First author
(year)

Title Country Study design (with
numbers)

Theme(with
technology or
not)

Focused
population
Purpose Purpose
category

Fridgen
(2017)

Contraception: the need for
expansion of counsel in
adolescent and young adult
(AYA) cancer care.

USA Systematic Review –
289 identified – 5
included

Sexual heatlh

Ayas in
general

Identify related studies on
contraception recommendations,
counseling discussions, and methods
of contraception in the AYA
oncology population.

Awareness
and action

Stanton
(2018)

Sexual function in
adolescents and young adults
diagnosed with cancer: A
systematic review.

USA Systematic Review –
2975 identified – 15
included

Sexual heatlh Ayas in
general

Identify, with supporting evidence,
the impact of cancer and its
treatment on the sexual function of
adolescents and young adults.

Awareness

Warner
(2016)

Social well-being among
adolescents and young adults
with cancer: a systematic
review.

USA Systematic Review –
253 identified – 26
included

Social issues Ayas in
general

Identify gaps in current research and
highlight priority areas for future
research. Social well-being

Awareness

Carretier
(2016)

A Review of Health Behaviors
in Childhood and Adolescent
Cancer Survivors: Toward
Prevention of Second
Primary Cancer.

United
Kingdom

Systematic review –
105 identified – 27
included

Quality of life

Ayas
(survivors)

Review the available literature on
cancer risk factors (lifestyle and
occupational exposures) in children
and ayas previously treated for
cancer, to identify interventions that
might be implemented to improve
healthy behaviors in this population.

Awareness/
action

Walker
(2016)

Psychosocial interventions
for adolescents and young
adults diagnosed with cancer
during adolescence: a critical
review.

United
Kingdom

Critical review – 1632
identified – 18
included

Quality of life Ayas in
general

Examine the availability of AYA-
specific psychosocial interventions
to assess the impact they have and
identify elements that make them
successful

Post

Sodergren
(2017)

Systematic review of the
health-related quality of life
issues facing adolescents and
young adults with cancer.

United
Kingdom

Systematic review –
2671 identified – 69
included

Quality of life Ayas in
general

Report the health-related quality of
life issues experienced by ayas
diagnosed with cancer and
undergoing treatment

Awareness

Bradford
(2017)

Health promotion and
psychological interventions
for adolescent and young
adult cancer survivors: A
systematic literature review.

Australia Systematic review and
metanalysis- 1123
identified – 17
included to synthesis –
0 to metanalysis

Quality of life Ayas
(survivors)

Identify, appraise and synthesize the
effects of health promotion and
psychological interventions for AYA
after cancer treatment.

Post

Richter
(2015)

Psychosocial interventions
for adolescents and young
adult cancer patients: a
systematic review and meta-
analysis.

Germany “Systematic review
and meta-analysis –
5084 identified – 12
included in synthesis –

7 included
in meta-
analysis”

Quality of life Ayas in
general

Assess the impact of
psychosocial
interventions on
mental health in ayas

Post

Quinn
(2015)

Quality of life in adolescent
and young adult cancer
patients: a systematic review
of the literature.

USA Systematic Review –
97 identified – 35
included.

Quality of life Ayas in
general

Identify key psychosocial factors
impacting quality of life in ayas with
cancer

Awareness

Barnett
(2016).

Psychosocial outcomes and
interventions among cancer
survivors diagnosed during
adolescence and young
adulthood (AYA): a
systematic review.

USA Systematic review –
15.301 identified – 38
included

Quality of life/
psychological
demands

Ayas in
general

Identify and synthesize literature
about psychosocial outcomes and
existing interventions specific to
ayas

Awareness
and action

Wong
(2017)

Patterns of unmet needs in
adolescent and young adult
(AYA) cancer survivors: in
their own words.

USA Systematic review –
2417 identified – 58
included

Heatlh system/
treatments

Ayas
(survivors)

Classify the phenomenological
experiences of AYA survivors based
on their own language.

Awareness

Galán(2018) Needs of adolescents and
young adults after cancer
treatment: a systematic
review.

Spain Systematic review –
1334 identified – 14
included

Heatlh system/
treatments
Ayas
(survivors)

To report on the needs of adolescent
and young adult cancer survivors
after their treatment.

Awareness

Gibson
(2017)

Improving the identification
of cancer in young people: A
scoping review

United
Kingdom

Scoping review – 340
identified – 28
included

Heatlh system/
treatments
Ayas in
general

Identify elements of the diagnostic
pathway; contextualize the many
factors across the diagnostic
pathway; search the possibility of
those to influence the practice and
oportunity to achieve the diagnose.

Awareness

Mccann
(2019)

Digital interventions to
support adolescents and

United
Kingdom
Heatlh system/
treatments
Ayas in
general

Identify, characterize and fully
assess the quality, feasibility and

Post
(continued on next page)
C.M. Telles

Cancer Treatment and Research Communications 27 (2021) 100316
21
(continued )
First author
(year)
Title Country Study design (with
numbers)
Theme(with
technology or
not)
Focused
population
Purpose Purpose
category

young adults with cancer:
systematic review.

Systematic Review-
4731 identified – 43
included.

efficacy of existing digital health
interventions that are specific to
ayas

Janin
(2018)

Talking About Cancer Among
Adolescent and Young Adult
Cancer Patients and
Survivors: A Systematic
Review.

Australia Systematic Review-
472 identified – 6
included

Heatlh system/
treatments
Ayas in
general

Analyze how cancer-related
communication was established
among young patients and their
surrounders

Awareness

Rojas
(2019)

Access to clinical trials for
adolescents and young adults
with cancer: A meta-research
analysis.

Belgium -Metanalysis – 3547
identified – 2176
clinical trials included

Heatlh system/
treatments
Ayas in
general

Analyze the impact of the age limit
spliting childhood from adulthood
on ayas with cancer and their
enrollment in clinical trials

Awareness

Friend
(2017)

Clinical trial enrollment of
adolescent and young adult
patients with cancer: a
systematic review of the
literature and proposed
solutions.

USA -Systematic review –
17 included

Heatlh system/
treatments
Ayas in
general

Understand the trends in trial
enrollment, recognize the facilitators
and barriers, and evaluate methods
to improve the enrollment.

Awareness

Rae (2019) System Performance
Indicators for Adolescent and
Young Adult Cancer Care and
Control: A Scoping Review.

Canadá – Scoping review – 697
identified – 19 includes

Heatlh system/
treatments
Ayas in
general

Indicate the quality indicators used
in AYA cancer care and control in a
Canadian context

Post

Kim (2016) Understanding the
experiences of adolescents
and young adults with
cancer: a meta-synthesis.

Australia -Systematic review –
2670 identified – 51
included

Heatlh system/
treatments
Ayas in
general

Meta-synthesis of qualitative studies
exploring experiences of young
cancer patients to identify the
overarching concepts that inform
future service and research
directions.

Awareness

Bibby
(2017)

What are the unmet needs
and care experiences of
adolescents and young adults
with cancer? A systematic
review.

Australia Sistematic Review –
7861 identified – 45
included

Heatlh system/
treatments
Ayas in
general

Assess what is currently known
about both Unmet Needs and Care
Experiences of ayas with cancer;
identify gaps in the research
literature; highlight potential areas
for improvement in the research
undertaken in this area.

Awareness

Robertson
(2015)

Strategies to improve
adherence to treatment in
adolescents and young adults
with cancer: a systematic
review.

Australia Sistematic review –
309 identified – 9
included

Heatlh system/
treatments
Ayas in
general

Synthesize recommendations and
strategies to improve Treatment
Adherence summarize evidence-
based strategies

Action

Pyke-Grimm
(2019)

Treatment Decision-Making
Involvement in Adolescents
and Young Adults With
Cancer

USA Integrative review –
4.047 identificados –
21 incluidos

Heatlh system/
treatments
Ayas in
general

Knowledge state about ayas
perspectives and involvements in
Treatmente Decision-Making; factor
that may influence it; relation with
their family and HCP context

Awareness

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[3] N.K. Bradford, R.J. Chan, Health promotion and psychological interventions for
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Adult. Oncol. [Internet] 9 (1) (2019) 1–11. Nov 11Available from: 10.1089/
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A scoping review of literature: What has been studied about adolescents and young adults (AYAs) with cancer?

Introduction
Methods
Literature search strategy
Screen and selection criteria
Data analysis
Results
Characteristics of included studies
Theme
Types of studies
Study designs
Countries
Focused population

Discussion
Purpose pattern
Purpose pattern: awareness
Purpose pattern: action
Purpose pattern: post-action evaluation
Conclusions
Funding statement
Author contributions
Appendix A – Summary of 139 Empirical Studies
Appendix B
References

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