Scoping review of research on adolescents and young adults with cancer

Cancer Treatment and Research Communications 27 (2021)
100316
Available online 29 January 2021
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: [email protected]
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:[email protected]
www.sciencedirect.com/science/journal/24682942
https://www.sciencedirect.com/journal/cancer-treatment-and-
research-communications
http://crossmark.crossref.org/dialog/?doi=10.1016/j.ctarc.2021.
100316&domain=pdf
http://creativecommons.org/licenses/by-nc-nd/4.0/
100316

2
(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

100316
3
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,
8,9,10,11,12,13,14,15,16,17,18,19,20,21,22,23,24,25,26,27,28,2
9,30,
31,32,33,34,35,36,37,38,39,40,41,42,43,44,45,46,47,48,49,50,5
1,52,
53,54,55,56,57,58,59,60,61,62,63,64,65,66,67,68,69,70,71,72,7
3,74,
75,76,77,78,79,80,81,82,83,84,85,86,87,88,89,90,91,92,93,94,9
5,96,
C.M. Telles
100316

4
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
100316
5
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.
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
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
100316
6
(continued )
First author
(year)
population
(with number)
category
process that shaped these
experiences.
Benedict, C.
(2016)
Fertility issues in
adult cancer survivors.
USA Interview and

focus group
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
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
cancer.
Australia Survey Qualitative Professionals
(122)
Heatlh
system/
treatments
Identify the learning needs
of health professionals
providing cancer care to
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

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
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

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
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
C.M. Telles
100316
7
(continued )
First author
(year)
population

(with number)
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
adults with cancer.
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
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 adolescents
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
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
life
Understand and identify
AYA patient concerns and
experiences throughout
awareness
C.M. Telles
100316
8
(continued )
First author

(year)
population
(with number)
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
Adults with Cancer.
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
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.
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
adults with cancer.
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
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
awareness
C.M. Telles
100316
9
(continued )
First author
(year)
population
(with number)
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
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
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
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

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.
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
adults (ayas) within the
first 2 years after a cancer
diagnosis and compare
their scores with
population norms and
identify trajectories of
awareness
C.M. Telles

100316
10
(continued )
First author
(year)
population
(with number)
category
social functioning over time
and its correlates.
Hydeman, J.
A. (2019)
Survivorship needs of
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
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
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
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
adult cancer.
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
adults with cancer.
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

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
C.M. Telles
100316
11
(continued )
First author
(year)

population
(with number)
category
young adult (AYA)
survivors.
Keegan, T. H.
(2018)
Cardiovascular disease
incidence in adolescent
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
cancer: oncology
provider perceptions of
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
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
adult patients and their
family members.

Norway Retrospective
cohort study -
Recorded
Consultations
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
adults.
Australia Survey Qualitative AYAs (196) Social issues Describe
the early
educational and vocational
outcomes of Australian
adults (ayas) after cancer
diagnosis and examines
factors associated with
these outcomes.
awareness

LaRosa, K. N.
(2019)
Provider perceptions’ of
a patient navigator for
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
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
adults with bone sarcoma
about clinical trial
participation.
awareness
C.M. Telles
100316
12

(continued )
First author
(year)
population
(with number)
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
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
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
adults with cancer before
and following use of a
smartphone-based
medication reminder
app.
USA Intervention and
Questionnaires
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
adult patients with
cancer: information
needs, prognostic
awareness, and outcomes
of disclosure.
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.
system/
treatments
Evaluate cancer treatment
decision- making among
ayas, including decisional
engagement and regret.
post
Martins, H. T.
(2018)
Who cares for
adults with cancer in
Brazil?.
Brazil Retrospective
cohort study -
Hospitals
registries
(2007–2011)
Qualitative Hospitals
(271)
Heatlh
system/
treatments

Evaluate exactly where
adults with cancer are
treated in Brazil.
awareness
May, E. A.
(2018)
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
cancer and their parents.
Australia Questionnaires
and Survey
and Family
(204)
Quality of
life
Investigate the prevalence
and predictors of
psychological distress in
(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

C.M. Telles
100316
13
(continued )
First author
(year)
population
(with number)
category
of the book on distress
levels.
McDonnell, G.
A.(2018)
A qualitative study of
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
young adults with
cancer.
USA Documental -
billing data
life
Examine the relationship
between need-based
pediatric psychology
service use and spending on
hospital care among
adults (ayas) with cancer.
awareness

McNeil, R.
(2019)
The changing nature of
social support for
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

adolescents 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
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
perspectives. 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
(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
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
C.M. Telles
100316
14
(continued )
First author
(year)
population
(with number)

category
Murnane, A.
(2015)
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)
exercise habits, quality of
life and physical activity
preferences.

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)
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
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
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
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
cancer? A report from the
AYA HOPE Study.
USA Documental -
National Cancer
Institute’s
population-based

AYA HOPE Study
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?.
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
adults in a
comprehensive cancer
center.
USA Retrospective
cohort study -
Medical records
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.
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.
life
Describe AYA cancer
survivors’ experiences
connecting with hcps
awareness

C.M. Telles
100316
15
(continued )
First author
(year)
population
(with number)
category
Poort, H.
(2017)
Prevalence and impact of
severe fatigue in
adult cancer patients in
comparison with
population-based
controls.
Netherlands Questionnaire Qualitative AYAs (83) Heatlh

system/
treatments
Determine the prevalence
of severe fatigue in
(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)
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
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
adult (AYA) cancer patients
and the factors associated
with HL
awareness
Robertson, E.
G.(2016)
Sexual and romantic
relationships:
experiences of adolescent
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
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
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
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
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
USA Retrospective
cohort study -
medical records
system/
treatments

Examine the current state
of clinical trial enrollment
of ayas at a major adult-
post
C.M. Telles
100316
16
(continued )
First author
(year)
population
(with number)
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
adults with cancer using
videoconferencing
technology.
cohort study -
medical records
life
Discuss the Recapture Life
randomised controlled
trial, which involved
online, videoconferencing-

based delivery of group-
based cognitive
behavioural therapy to
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
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
adults with cancer: how
well is Australia doing?.
system/
treatments

Describe how well
Australian cancer services
deliver patient-focussed,
developmentally
appropriate care to
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
survivors.
USA Retrospective
cohort study -
survey records
system/
treatments
Examine whether
survivorship care planning
(receipt of written
treatment summary or
instructions for follow-up
care) is associated with
unmet needs among
(AYA) cancer survivors
(aged 15–39 at diagnosis).
awareness
Shirazee, N.
(2016)
Patterns in Clinical Trial
Enrollment and
Supportive Care Services
Provision Among
Adults Diagnosed with
Having Cancer During

the Period 2000–2004 in
Western Australia.
cohort study -
medical records
system/
treatments
Examine Support services
provision and clinical trial
enrollment
post
Skaczkowski,
G. (2018)
Factors influencing the
documentation of
fertility-related
discussions for
adults with cancer.
cohort study -
Medical records
system/
treatments
Examine the rate of medical

record documentation of
fertility-related discussions
and fertility preservation
(FP) procedures for
adults (ayas) with cancer in
Australia.
awareness
C.M. Telles
100316
17
(continued )
First author
(year)
population
(with number)
category
Skaczkowski,
G.(2018)

Factors influencing the
provision of fertility
counseling and impact on
quality of life in
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
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
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
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
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
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
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
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)
Italy Interviews Qualitative AYAs (1000) Quality of
life
Examine the perceived
personal growth and daily
awareness

C.M. Telles
100316
18
(continued )
First author
(year)
population
(with number)
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
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.
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
adult cancer services by
distance to treatment
location.
system/
treatments

Describe how distance to
treatment location
influences patient
navigation preferences for
adolescent and young
adult (AYA) cancer patients
and survivors.
awareness
Wasilewski-
Masker, K.
(2016)
adult perceptions of
cancer survivor care and
supportive
programming.
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
adults with cancer.
USA Retrospective
cohort study -
eletronic helth
records
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

Heath
Examine the impact of
cancer on sexual function
and intimate relationships
awareness
C.M. Telles
100316
19
(continued )
First author
(year)
population
(with number)
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
adults with cancer in
Australia.
system/
treatments
Examine the care
experiences of Australian
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
Heath and
technology
"To evaluate the feasibility
of a self-help web-based
intervention to alleviate
sexual problems and
fertility distress in
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
cancer.

USA Survey and
madical records
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
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
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
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

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
100316
20
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
(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.
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
with cancer: a 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 -
included
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 -
included in synthesis -
7 included
in meta-
analysis"
general
Assess the impact of
psychosocial
interventions on
mental health in ayas
Post
Quinn
(2015)
Quality of life in adolescent
patients: a systematic review
of the literature.
97 identified - 35
included.
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
(AYA) cancer survivors: in
their own words.
USA Systematic review -
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 -
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
C.M. Telles
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-
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
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
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
cancer: a meta-synthesis.
Australia -Systematic review -
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
with cancer? A systematic
review.
Australia Sistematic Review -
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

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
References
[1] E.G. Robertson, C.E. Wakefield, K.H. Marshall, U.M.
Sansom-Daly, Strategies to
improve adherence to treatment in adolescents and young adults
with cancer: a
systematic review, Clin. Oncol. Adolesc. Young Adults 5 (2015)
35–49.
[2] E. Walker, A. Martins, S. Aldiss, et al., Psychosocial
interventions for adolescents
and young adults diagnosed with cancer during adolescence: a
critical review,
J. Adolesc. Young. Adult Oncol. [Internet] 5 (4) (2016) 310–
321. Aug 3Available
from: 10.1089/jayao.2016.0025.
[3] N.K. Bradford, R.J. Chan, Health promotion and
psychological interventions for
adolescent and young adult cancer survivors: a systematic
literature review,
Cancer Treat. Rev. [Internet] 55 (2017) 57–70. Available from:
http://www.sci
encedirect.com/science/article/pii/S0305737217300300.

[4] A.M. Stanton, A.B. Handy, C.M. Meston, Sexual function in
adolescents and
young adults diagnosed with cancer: a systematic review, J.
Cancer Surviv.
[Internet] 12 (1) (2018) 47–63, https://doi.org/10.1007/s11764-
017-0643-y.
Available from:.
[5] C. Rae, N. Shah, S. De Pauw, et al., System performance
indicators for adolescent
and young adult cancer care and control: a scoping review, J.
Adolesc. Young
Adult. Oncol. [Internet] 9 (1) (2019) 1–11. Nov 11Available
from: 10.1089/
jayao.2019.0069.
[6] E.L. Warner, E.E. Kent, K.M. Trevino, et al., Social well -
being among adolescents
and young adults with cancer: a systematic review, Cancer
[Internet] 122 (7)
(2016) 1029–1037, https://doi.org/10.1002/cncr.29866. Apr
1Available from:.
[7] S. Galán, R. de la Vega, J. Miró, Needs of adolescents and
young adults after
cancer treatment: a systematic review, Eur. J. Cancer Care
(Engl.) [Internet] 27
(6) (2018) e12558. Nov 1Available from: 10.1111/ecc.12558.
[8] A.M. Grieger, S.M. Castellino, Delineating the age ranges
used to define
adolescents and young adults, J. Clin. Oncol 29 (16) (2011)
e492–e493.
[9] E. Abrol, M. Groszmann, A. Pitman, et al., Exploring the
digital technology

preferences of teenagers and young adults (TYA) with cancer
and survivors: a
cross-sectional service evaluation questionnaire, J. Cancer
Surviv. [Internet] 11
(6) (2017) 670–682, https://doi.org/10.1007/s11764-017-0618-z.
Available
from:.
[10] C. Acquati, B.J. Zebrack, A.C. Faul, et al., Sexual
functioning among young adult
cancer patients: a 2-year longitudinal study, Am. Cancer Soc. J.:
Cancer [Internet]
124 (2) (2017) 398–405, https://doi.org/10.1002/cncr.31030.
Available from:.
[11] K. Ballantine, V. Utley, H. Watson, et al., The burden of
cancer in 25–29 year olds
in New Zealand: a case for a wider adolescent and young adult
age range, New
Zealand Medical Journal 131 (1468) (2018) 15–24.
[12] K.R. Ballantine, H. Watson, S. Macfarlane, et al., Small
numbers, big challenges:
adolescent and young adult cancer incidence and survival in
New Zealand,
J. Adolesc. Young Adult. Oncol. [Internet] 6 (2) (2017) 277–
285, https://doi.org/
10.1089/jayao.2016.0074. Available from:.
[13] K.S. Barton, T. Tate, N. Lau, et al., I’m not a spiritual
person.” How hope might
facilitate conversations about spirituality among teens and
young adults with
cancer, J. Pain Symptom. Manage. [Internet] 55 (6) (2018)
1599–1608. Available
from:

http://www.sciencedirect.com/science/article/pii/S08853924183
00435.
[14] N. Belpame, M.C. Kars, D. Beeckman, et al., The 3-Phase
process in the cancer
experience of adolescents and young adults, Cancer Nurs.
[Internet] 41 (3)
(2018). Available from:
https://journals.lww.com/cancernursingonline/Fulltex
t/2018/05000/The_3_Phase_Process_in_the_Cancer_Experience
_of.14.aspx.
[15] N. Belpame, M.C. Kars, D. Beeckman, et al., The AYA
Director”: a synthesizing
concept to understand psychosocial experiences of adolescents
and young adults
with cancer, Cancer Nurs. [Internet] 39 (4) (2016). Available
from: https://journ
als.lww.com/cancernursingonline/Fulltext/2016/07000/_The_A
YA_Director___
A_Synthesizing_Concept_to.6.aspx.
C.M. Telles
http://refhub.elsevier.com/S2468-2942(21)00015-0/sbref0001
00300
00300
https://doi.org/10.1007/s11764-017-0643-y

Scoping review of research on adolescents and young adults with cancer

Scoping review of research on adolescents and young adults with cancer

Empfohlen

Empfohlen

Weitere ähnliche Inhalte

Ähnlich wie Scoping review of research on adolescents and young adults with cancer

Ähnlich wie Scoping review of research on adolescents and young adults with cancer (20)

Mehr von TawnaDelatorrejs

Mehr von TawnaDelatorrejs (20)

Kürzlich hochgeladen

Kürzlich hochgeladen (20)

Scoping review of research on adolescents and young adults with cancer