Article Analysis 1
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: camimarochi18@gmail.com.
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https://doi.org/10.1016/j.ctarc.2021.100316
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(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%).
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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,
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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).
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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)
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(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
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(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
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(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
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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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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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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
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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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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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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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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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(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
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(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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(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
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(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
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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
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(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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C.M. Telles
- 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