What Are the Unmet Needs and Care Experiences of Adolescents and Young Adults with Cancer? A Systematic Review

Abstract

Purpose:

To assess what is currently known about unmet needs and care experiences of adolescents and young adults (AYAs) with cancer, identify gaps in the research literature, and highlight potential areas for improvement in future research.

Methods:

Medline, PsycINFO, CINAHL, and EMBASE databases were searched to identify relevant studies from 1990 to July 2015. Eligible articles included self-reported care experiences or unmet needs of cancer patients aged between 15 and 30 years in the period between symptom onset and 2 years post-treatment. Qualitative and quantitative designs were included.

Results:

Forty-five articles from 39 studies (23 qualitative, 12 quantitative, and 4 mixed methods) were rated as “adequate” or “good” quality and reviewed. The majority included any cancer diagnoses and none was longitudinal. There was considerable variation in age ranges and time since diagnosis between studies. Only two studies used standardized survey tools, with both tools validated on adult populations. The most common areas assessed for care experiences and needs were information/communication and fertility. In addition, care experience studies commonly examined clinical expertise and age-appropriate settings, while unmet needs studies reported on emotional support and peer interaction.

Conclusion:

Findings highlight the need for age-appropriate information and treatment facilities, access to emotional support services, and contact with peers. Fertility information and services are a priority issue for this group. Future research would benefit from a consistent definition of the AYA age range, increased used of standardized scales validated with this population, and longitudinal designs to assess changes over time.

Introduction

Adolescents and young adults (AYAs) with cancer are a distinct group from adult and pediatric cancer patients.^1,2 The many emotional, developmental, and social developmental milestones that occur during this period, including identity formation, autonomy from family, emotional and cognitive independence, and development of intimate relationships, mean that the psychosocial and supportive care needs of AYA patients with cancer tend to be broader in scope and intensity than the needs of younger or older patients.³ In addition, a cancer diagnosis thrusts AYAs into a hospital and oncology environment that is both unfamiliar and out of step with their life stage.³ The way healthcare providers (HCPs) interact and deal with the supportive care needs of AYAs is an important factor in their satisfaction with care,⁴ yet most AYAs will be treated in hospitals with limited expertise with this population.

The challenges in treating AYAs with cancer are increasingly recognized, and best practice guidelines for their cancer care are being developed and implemented.^5–7 Information about the quality of care provided to AYAs is needed to help inform these guidelines and to evaluate the impact of new initiatives for this age group. While service evaluation has traditionally focused on clinical information, there is growing recognition of the importance of assessing the patient's perspective of the quality of their care through patient-reported measures.⁸ Two types of patient-reported measures are commonly discussed in the literature: patient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs). PROMs generally focus on assessing dimensions of health-related quality of life and include patient reports of their functioning, symptoms, and psychosocial well-being.^9,10 In contrast, PREMs aim to determine the extent patients’ care experiences meet their expectations and/or best practice recommendations.⁸ Understanding patients’ unmet needs is one method for identifying gaps in patients’ care experiences.¹¹ Needs assessments identify the components of care patients feel are missing or not available.¹² A number of different need domains have been identified in the literature,^11–13 including psychological and emotional (e.g., access to support programs), healthcare services (e.g., prompt access to test results), information (e.g., being provided with age-appropriate information), and practical (e.g., transport to treatment centers). The majority of studies assessing cancer patients’ unmet needs exclude adolescents.^11,13,14

A second type of PREMs asks about patients’ care experiences, with patients indicating whether specific events or processes occurred during their care.⁸ Care experience assessments focus on areas of care consumers or best practice guidelines identify as important and commonly assess patients’ interactions with HCPs, experiences at the treatment facility (e.g., waiting times), information provision (e.g., understandable, delivered when needed), communication (e.g., could ask questions), and coordination of care (e.g., information transfer between HCPs and/or treatment centers). Experience of care measures can be used to inform practice improvements.^8,15 While there has been increasing interest in collecting population-based PREMs data from cancer patients,^15–18 most studies do not include people as young as 15, and the proportion of late AYAs participating in these studies is generally small.^16,19

A new wave of quality-of-care assessment in AYA cancer has recently emerged, with teams in the United Kingdom, United States of America, and Australia working to develop measures assessing the experiences of care and/or unmet needs of this age group.^20–22 However, to our knowledge, there has not been a comprehensive systematic review that examines what is already known about unmet needs and care experiences for AYAs with cancer. While Taylor et al.²³ recently conducted a review of studies on AYA cancer, which included some aspects of experience of care, their focus was identifying mediators and moderators of psychosocial well-being and their review was limited to qualitative studies. Although the reviews by Smith et al.,²⁴ Marris et al.,²⁵ and Wilkins et al.²⁶ included all study designs, each focused on only one aspect of AYA care: nursing adolescents,²⁴ age-specific models of care,²⁵ and AYA transition experiences.²⁶

Adopting a comprehensive approach, this review aims to assess what is currently known about both unmet needs and care experiences of AYAs with cancer, identify gaps in the research literature, and highlight potential areas for improvement in the research undertaken in this area. We focus on studies that assess experiences and/or needs directly and include all research designs.

Methods

Search strategy

We searched Medline, PsycINFO, CINAHL, and EMBASE databases to identify articles that related to the unmet needs and care experiences of AYAs with cancer between January 1, 1990, and July 23, 2015. To ensure articles addressing these issues were captured, we used a broad range of search terms, developed through review of terms used in previous literature reviews of unmet needs and care experiences,^14,23 examination of MESH terms used for key articles, and consultations with experts (see Table 1 for search terms used). Indexed subject headings and words within the article's body were searched. Only articles published in English were considered. The database searches were supplemented by searching references of relevant published reviews^1,2,23–31 and articles included in our review. The lead author undertook the database searches.

Table 1.

Terms Used in Literature Searches on All Databases

Cancer terms	Adolescent terms	Experience/needs terms
“neoplasms” OR “cancer care facilities” OR “oncology service, hospital” OR “medical oncology” OR “cancer”	“adolescent^” OR “teenage^” OR “youth^*” OR “young adult” OR “AYA”	“needs assessment” OR “patient satisfaction” OR “consumer satisfaction” OR “health care survey” OR “Patient-Centered Care” OR “quality of health care” OR “patient reported outcome^” OR “patient experience^” OR “patient survey^” OR “unmet need^” OR “perceived need^” OR “supportive care need^” OR “psychosocial need^” OR “information need^” OR “patient perception^” OR “care experience^” OR “patient^* views” OR “support care need^” OR “psychological need^” OR “physical need^*”

An “and” function combined terms from the three columns.

AYA, adolescents and young adults.

Inclusion criteria

Qualitative and quantitative articles were eligible for review. There is no internationally agreed age range for AYA oncology, with, for example, Australia and the United Kingdom using 15–24 years, while the United States of America uses 15–39 years. For the purpose of this review, AYA was defined as 15–30 years. Articles were included if they reported care experiences or unmet needs; for the care period reported on, the study sample was aged between 15 and 30 years, the sample's average age fell within this range, or the article reported information separately for subgroups within this age range; the findings related to the period between symptom onset and 2 years after treatment completion; and reports came directly from patients (not parent reports, observations, or expert opinion). Articles that focused on quality of life, emotional distress, physical symptoms, or the experiences or needs of patients in a period 2 or more years post-treatment were excluded. Intervention trials and medical record reviews were also excluded. If one study generated more than one publication, all articles were included if different results were presented. However, if the sample and results were similar between articles, only the article with the most complete data was included.

All authors participated in the review process. A subset of abstracts and articles was assigned to each author for review against the inclusion and exclusion criteria, with each abstract and article reviewed by at least two authors. Disagreements were resolved by a third independent review, with subsequent discussion until consensus was reached.

Article classification and data extraction

Each author reviewed a subset of eligible articles, with each article reviewed by at least two authors. Articles were classified according to their methodology (qualitative, quantitative, mixed methods), and reviewers determined whether experiences of care or unmet needs were the main focus of the article, one of several key foci, or an incidental finding among study results. Reviewers also extracted the following data from each article: sample size, gender mix of sample, response rate, method of identifying eligible participants, method of data collection, whether the study used existing survey instruments, country of origin, age of participants at diagnosis, age when participating in study, treatment stage assessed (current, one or more specific periods [e.g., chemotherapy], overall experience) participants’ current treatment stage (e.g., time since diagnosis, currently on/off treatment), and study findings. The lead author compared the data extracted by each reviewer for consistency with discrepancies resolved by rereview of the article.

Research quality ratings

To assess the quality of research articles from different methodological traditions, quality criteria were specifically developed with reference to the Cochrane Handbook for Systematic Reviews of Interventions,³² the Critical Appraisal Skills Programme,³³ and other guidelines and checklists.^34–37 Criteria differed for qualitative and quantitative articles, but included consideration of repeatability, sample size, design, methodology, analytic rigor, and justification of conclusions (see Supplementary Appendix A1 for checklist; Supplementary Data are available online at www.liebertpub.com/jayao). Articles scored one point for every item satisfied, to achieve a total score ranging from 0 (lowest quality) to 15 (highest quality). Mixed methods articles were scored based on their average ratings for qualitative and quantitative components. Based on the total score, article quality was classified as poor (0–6.9), adequate (7–11.9), or good (12–15).

The ratings checklists were piloted on a subset of quantitative and qualitative articles and refined to ensure adequate inter-rater agreement. Once the checklists were finalized, at least two reviewers rated each article. Disagreements (ratings differing by three or more points) were resolved by referral to a third reviewer.

Results

A total of 7025 unique English language articles were identified, of which 5281 were assessed as not relevant based on their titles, for example, referring to AYA survivors of childhood cancer or to a clinical trial (Fig. 1). Abstracts for the remaining 1744 articles were read, and 1372 articles not meeting the inclusion criteria were eliminated. The remaining articles were read by at least two authors to confirm the inclusion criteria were met, and a further 323 articles were excluded. Reasons for exclusion at this stage are shown in Figure 1. The methodology of the remaining 49 articles from 42 separate studies was reviewed with the quality of each article assessed.

FIG. 1.

Flowchart of article selection process.

Description of studies

Table 2 summarizes methodological information for the 23 qualitative, 14 quantitative, and five mixed methods studies (detailed description of articles shown in Supplementary Table S1). Fifteen studies were from the United Kingdom, 15 from the United States of America and Canada, and 16 were from other developed countries. The majority of studies (33/42) involved patients with a mix of cancer diagnoses. Four studies targeted specific cancers, two targeted specific treatments, and three targeted patients having treatment that may affect fertility. Unmet needs or care experiences were the main focus of 30 studies, 8 reported unmet needs or care experiences as one of several study aims, while 4 focused on other outcomes, but included sufficient relevant information in their results for inclusion.

Table 2.

Characteristics of the 42 Studies Reported in the Reviewed Articles by Research Method

	Quantitative studies (n = 14)	Qualitative studies (n = 23)	Mixed methods articles (n = 5)	Total (N = 42)
Study design
Cross sectional	14	23	5	42
Data collection method
Survey	14	0	0	14
Interview	0	13	0	13
Focus groups	0	4	0	4
Interview and focus groups	0	3	0	3
Survey and interviews/focus groups/open questions	0	0	4	4
Delphi	0	0	1	1
Country of study
North America	7	6	2	15
United Kingdom	3	11	1	15
Europe	2	2	1	5
Australia	2	3	1	6
South America	0	1	0	1
Recruitment source
Pediatric hospital only	2	2	1	5
Adult hospital only	3	7	1	11
Teenage cancer unit only	0	7	0	7
Support organization/AYA cancer websites	3	3	1	7
Mixed hospitals	2	1	0	3
GPs/other medical	0	2	0	2
Registry	0	1	1	2
Eligible subgroups
All participants	9	15	3	27
All patients in study	2	6	2	10
Subgroup of study	3	2	0	5
Cancer diagnosis
Any cancer diagnosis	10	19	4	33
Selected cancers	2	1	1	4
Selected for treatment/fertility impact	2	3	0	5
Focus
Main focus	11	14	5	30
One of several foci	3	5	0	8
Incidental	0	4	0	4
Quality rating
Poor	2	1	1	4
Adequate	8	16	4	28
Good	4	10	3	17
Mean (SD)	9.8 (2.4)	10.3 (2.3)	9.4 (3.4)	10.0 (2.39)

Across all study types, the most common avenue for patient recruitment was through adult hospitals (11/42). Sixteen studies recruited patients from a single hospital and 12 recruited from two or more hospitals. One study did not provide information on recruitment source.³⁸

The average quality ratings of the qualitative, quantitative, and mixed methods article were 9.8 (SD = 2.4), 10.3 (SD = 2.3), and 9.4 (SD = 3.4), respectively, giving the articles an average rating in the adequate range (Table 2). Four articles^39–42 received a “poor” quality rating and were excluded from further review. After excluding these articles, the average quality rating across all studies remained in the adequate range (mean = 10.6, SD = 1.8).

Sample size, study participants’ age, time between diagnosis and study participation, and stage of care for the 45 remaining quantitative, qualitative, and mixed method articles are summarized in Table 3, while Table 4 provides detailed information for each study. Sample size was over 100 in three quantitative articles and two mixed method articles, with four quantitative and five mixed methods articles having 40 or fewer participants. Participants’ age ranges varied between articles, and the method of reporting participants’ age also varied. Sixteen articles reported the mean or median age of participants as under 20, while six reported it as over 30. Five articles included people over 40 with one quantitative article involving participants aged up to 74 years.⁴³ However, as this article reported on patients’ experiences at diagnosis when the median age of participants was 29 years, it was retained in the review.

Table 3.

Summary of Sample Characteristics, Measures, and Treatment Stage Assessed Reported in the 45 Articles Reviewed by Research Method

	Quantitative articles (n = 12)	Qualitative articles (n = 26)	Mixed methods articles (n = 7)	Total (N = 45)
Sample size
≤10	0	9	2	11
11–20	1	9	1	11
21–40	3	8	2	13
41–70	4	0	0	4
71–100	—	0	0	0
101–200	1	0	0	1
200+	3	0	2	5
Median sample size (range)	52 (16–1088)	15 (4–40)	26 (10–523)	23 (4–1088)
Gender mix
All males	3	2	0	5
All females	2	1	0	3
Mix	7	21	5	33
Not stated	0	2	2	4
Age when surveyed
Median/mean
≤20 years	5	8	3	16
21–30	3	9	0	12
31–40	3	2	1	6
Range
14–29	0	5	0	5
30–45	1	0	0	1
Mix (teens/adults)
16/31	1	0	0	1
Not stated	0	3	3	6
Time between survey and diagnosis
Within 6 months	2	2	0	4
7 months–2 years	2	3	3	8
2–5 years	3	5	1	9
More than 5 years	1	1	3	5
Not reported	4	14	0	18
Mix time for adults/teens	0	1	0	1
Stage reported on
Current	3	0	1	4
Specific period (e.g., fertility, chemotherapy)	5	10	2	17
General, throughout care	2	7	4	13
No period specified	2	9	0	11
How long ago period reported on
Current, past month	2	1	0	3
Within past 6 months	2	0	0	2
Up to 2 years	1	5	3	9
Up to 3 years	0	1	1	2
Up to 5 years	6	12	3	21
Could not be assessed	0	7	0	7
Questions used
Researcher developed	8	0	4	12
Existing survey tool	3	0	1	4

Table 4.

Sample Descriptions, Measures, Treatment Stage Assessed, and Key Findings for Each Article

Authors of first article	Response rate %	M^b %	Age at study	Age at diagnosis	Treatment stage assessed	Time since diagnosis and survey	Time since care reported on?	Measures used	Key findings	Total quality rating (mean)
Quantitative studies
Decker et al.³ n = 39	Not stated	51	M = 16 years (11–21)	Not stated	Current	1–3 years	Current^a	The Information Preferences of Adolescents scale, developed by the researchers for study based on 2 previous qualitative studies	Patients wanted information on a wide range of topics, including extras beyond those listed on the survey. Females had higher information needs than males. There were no significant age differences. Patients further from diagnosis tended to have higher information needs	Adequate (8.75)
Reynolds et al.⁵¹ n = 31	48% of those invited	61	Edinburgh: median = 17.5 years (14–22) Newcastle: median = 16 years (14–20)	Edinburgh: median = 15.5 years (12–20) Newcastle: median = 14 years (13–19)	General during treatment	Mix of on and off treatment, time since diagnosis not reported	From current up to 3 years ago	The Youth Satisfaction Questionnaire.⁷⁷ The second half consists of 21 items developed for this study by the researchers	There was no difference in overall satisfaction between those attending the teenage care unit and those in adult/pediatric clinics. Those in the teenage unit rated the following items more highly: recreational (p < 0.005) and relaxation (p < 0.002) facilities, studying space (p < 0.004), ward noise (p < 0.02), company of the same age (p < 0.03). Patients from both centers were dissatisfied with hospital food and menus	Good (12.25)
Edge et al.⁶³ n = 45 (41 used for most analyses)	82%	100	M = 19.2 years (15–24)	M = 17.1 years (12–21)	Current, fertility preservation	M = 2.1 years (0–5)	Mix of current and up to 5 years ago	Questions developed by the researchers for study based on those they had used in previous research	Fertility discussions happened from within 1 week of diagnosis (55%) to 2–6 months post-diagnosis (16%). Parents were often present for discussions (71%), which patients found acceptable. 58% felt that anxiety affected their ability to think about fertility. Patients unable to bank sperm were younger (p < 0.05). Physically getting to the sperm bank was a key barrier. The successful group found it easier to discuss fertility with health professionals (p = 0.04). Those attending the sperm bank with parents found this embarrassing. More detailed information about sperm banking is needed	Adequate (8.5)
Zebrack et al.⁷⁴ n = 1088	Not stated	24	M = 30.8 years (SD 5.6, 18–40)	M = 26.5 years (SD 5.8, 15–35)	General during treatment, follow-up care/survivor ship	M = 4.3 years (SD 3.6)	From current up to 5 years ago	Questions developed by the researchers for study based on needs identified in a pilot study	For patients in treatment, the most highly ranked healthcare needs were state-of-the-art AYA treatment (72% ranked as 1 or 2) and access to HCPs with AYA expertise (57%). The most highly ranked support care needs were support from family (75%) and friends (45%). Needs differed by current age, diagnosis age, and time since diagnosis	Adequate (11.25)
Ginsberg et al.⁶⁴ n = 50	82%	100	M = 17.2 years	Not stated	Fertility preservation	Starting chemotherapy	Within the past 6 months	Questions developed by the researchers for study	About 90% of patients decided to bank sperm. Parents and patients made a joint decision about sperm banking 80% of the time. Patients wanted information about sperm preservation early (within 1 week of diagnosis). Patients were split on whether they wanted a parent present when the topic was raised	Adequate (7.5)
Oosterhuis et al.⁵⁵ n = 37	92.5% of eligible	54	M = 18.3 years (SD 3.0, 14–25)	Not stated	Fertility preservation	M = 4.75 years (0.25–14)	Up to 5 years ago or more	Questions developed by the researchers for study	Patients were concerned about reproductive health. 35% were satisfied with the information provided. The majority did not receive information about the impact of cancer treatment on fertility, fertility preservation options, or how to get their fertility tested. The preferred ways to receive fertility information were from an oncologist (46%) or fertility specialist (56%)	Adequate (10.25)
Campos et al.³⁸ n = 16	Not stated	0	M = 31.5 years (23–41)	M = 30 years (22–39)	Fertility preservation	38% were <1 year post-diagnosis, 31% were 1–2 years post-diagnosis, 31% were >2 years post-diagnosis	From recent to up to 2 years ago	The Ovarian Cancer or Borderline Malignancy of the Ovary: Fertility Sparing Survey, developed by the researchers for this study	The majority of patients (91%) discussed fertility options with their clinicians, but only 16% engaged in measures to preserve fertility. Preservation of fertility was important to all participants	Adequate (9.75)
Dyson et al.⁵⁰ n = 53	43% of those eligible, not approached due to availability of recruiters. Of those approached, 74% participated	57	M = 20.96 years (16–30)	Not stated	Current	M = 44.4 days (3–118)	Within the past month	Supportive Care Needs Survey (SCNS-34)⁸²	Physical and daily living needs were the most frequent unmet needs overall, then psychological needs, health system and information needs, and care and support needs	Good (12.25)
Gupta et al.⁵² n = 243	96% of those approached	61	Median = 28 years (17–35)	Not stated	No period specified	Mix of on and off treatment, time since diagnosis not reported	From current to 5 years ago	Questions adapted by the researchers for this study, based on Zebrack's 2006 unmet needs survey⁷³	38% felt it was important to receive care in a dedicated unit with other young people. Areas that >80% rated as at least 8/10 important included diagnosis-specific information, fertility, healthy diet, physical fitness/exercise. 65% had not met other young people with cancer and 39% would like to. Females rated information/service needs more highly than males	Adequate (9.75)
Skoogh et al.⁴³ n = 974	82% of those approached	100	M = 41 years (20–74) Median = 39 years	M = 30 years (16–64) Median = 29 years	No period specified	M = 11 years (3–26)	Up to 20 years ago or more	Questions developed by the researchers for this study based on a qualitative phase	63% experienced a psychological crisis with 76% of these experiencing the crisis at the time of diagnosis and treatment. Most men wanted psychological support and information on stress/crisis reactions to be offered at diagnosis, but only 36% were offered counseling	Good (12)
Zebrack et al.⁸⁰ n = 143	75%	51	Pediatric group: M = 15.7 years (SD 1.5). Adult group: M = 31.0 years (SD 6.0). (Only data from 20- 29-year olds included in this review)	Not stated	Current	M = 67 days (0–4 months)	In the past 6 months	Questions developed by the researchers for this study based on those they had used in previous research	Those aged 20–29 were significantly less likely than teens, and those aged 30–39 to use mental health services and were more likely to have unmet needs regarding cancer information, fertility information, and diet/nutrition information. AYAs treated in adult facilities more likely to report an unmet need for age-appropriate internet sites, professional mental health services, camp/retreat programs, transportation assistance, and complementary and alternative health services	Adequate (11.75)
Bastings et al.⁵⁸ n = 64 (provides data on 60)	59% of those eligible	0	M = 28.9 years (SD 5.7)	Not stated	Fertility preservation	Mix of on and off treatment; time since diagnosis not reported	Up to 5 years ago	Experience of care questions developed by the researchers for this study. Also used Dutch translations of Decisional Conflict Scale⁹¹ and Decision Regret Scale⁹²	Patients generally had a positive experience of fertility preservation counseling, but reported room for improvement. Negative experiences of counseling were associated with decisional conflict not enough time for counseling, (p < 0.0001); not having opportunity to ask all questions, (p < 0.0001); not feeling supported by counselor, (p = 0.0003); all options not discussed, (p = 0.0001); benefits and disadvantages of options not clearly explained, (p = 0.0005). Decisional conflict was associated with decision regret	Good (12.5)
Kyngäs et al.⁶⁸ n = 14	Not stated	43	15–19 years (10) and 20–22 years (4)	Not stated	No period specified	Time since diagnosis: 2 months–2 years (2); 2–5 years (8), >5 years (4)	Up to 5 years ago or more	N/A	HCPs discussed treatment, how to cope with everyday life, and energy with their patients. There was less discussion of personal matters such as financial difficulties. Health professionals’ knowledge and skills were valued by patients. Having a primary nurse/physician was seen as important. Diagnosis was a difficult time as health professionals lacked the understanding of AYA issues needed to provide support	Adequate (8)
Wilkinson⁷⁵ n = 14	Not stated	71	M = 17 years (15–20)	Not stated	No period specified	No information	Could not be determined	N/A	Problems with delayed diagnosis were noted for cancers other than leukemia. High satisfaction was evident for those treated on the adolescent ward who reported good facilities and staff expertise. Being managed by a specialist center and education were ranked as important care priorities. Being close to other young people was seen as important and worth travelling for	Adequate (7.75)
Hedstrom et al.⁶⁷ n = 23	74%	65	Not stated (recruitment criteria 13–19 years)	M = 16 years (12–22)	Diagnosis, general during treatment, chemotherapy, inpatient stays	1 month–1 year (11), 1–3 years (7), 3–5 years (3)	From current up to 5 years ago	N/A	Most common concerns: diagnosis—fear of missing school, friends and leisure activities (7/22); chemotherapy—physical symptoms (16/23); admission—nothing (11/23). Most common positives: diagnosis—knowing what was wrong (no more uncertainty) (12/20); chemotherapy—that it can help you get well (13/20); admission—nice, understanding staff (9/23). Good care consists of friendly, supportive, and competent staff who provide age-appropriate information	Adequate (10.25)
Mulhall et al.⁸³	Not stated	40	13–20 years	Not stated	General questions throughout the cancer journey	No information	Difficult to determine, but likely current/recent	N/A	Key themes (all articles): cancer and the benefits of a specialist AYA cancer unit; changes over time; age-appropriate physical structures and facilities; social context (informal and relaxed approach); maintaining normal family routines; staff expertise	Adequate (7.87)
Kelly et al.⁷⁶n = 10										Adequate (9.25)
Duffey-Lind et al.⁷²n = 4	Not stated	50	16–17 years	Not stated	Finishing treatment/shifting to follow-up care	Finished treatment median of 2 years earlier, time since diagnosis not stated	From current up to 2 years ago	N/A	Survivors had some knowledge of why follow-up tests were needed and potential late effects. They had mixed impressions of primary HCPs’ knowledge, but generally thought oncologists were more knowledgeable. Coming off treatment was associated with a range of responses including relief, feeling abandoned, feeling isolated and unsupported, concerns about school/peers, and a need for information about what to expect	Adequate (10.5)
Miedema et al.⁴⁵ n = 15	Not stated	40	M = 30.9 years (20–43)	M = 27.3 years (20–35)	Diagnosis	M = 3.6 years (0–16)	From the past 6 months to 5 years or more	N/A	Participants’ youth appeared to contribute to delays in diagnosis, with 3/4 experiencing delays. Delays were attributed to patient in-action or family physician in-action. Delays may not have affected treatment outcome, but did cause distress. The process of diagnosis was an important part of the overall cancer experience	Adequate (9)
Chapple et al.⁵⁴ n = 18	Not stated	100	16–18 years (6 patients) and 19–26 years (12 patients)	Not stated	Fertility preservation	Mix of on and off treatment, time since diagnosis not stated	Could not be determined	N/A	The importance of choice associated with fertility preservation. The need for time to consider options regarding fertility preservation. The need for more fertility counseling and more detailed information about the process. The need for improvement in physical facilities for sperm banking. Embarrassment regarding conversations with doctors about fertility	Adequate (10.75)
Grinyer⁶² n = 40	Not stated	Not stated	16–26 years	15–25 years	No period specified	No information	Could not be determined	N/A	All male patients were offered the opportunity to bank sperm, but some found it difficult or embarrassing. Those treated on nonspecialist wards reported a lack of staff understanding of psychosocial issues. Those treated on wards with older patients found this difficult/distressing, while those on children's wards thought the setting was inappropriate. Those on age-specific wards experienced emotional benefits and were provided with financial advice, an age-appropriate schedule, better access to friends, better information on fertility and appearance changes, educational services, and recreational activities	Good (12.5)
Grinyer⁸⁴ n = 28	Not stated	Not stated (only reports on those recruited through hospitals)	14–26 years	Not stated	No period specified	No information	Could not be determined	N/A	Key concerns for AYAs were place of care and appearance changes. They were less concerned about information provision. AYAs wanted ownership over information throughout treatment. Parents had differing perspectives	Adequate (9)
Palmer et al.⁶⁹ n = 6	12%	33	M = 20.5 years	M = 17.5 years (14–21)	General throughout the cancer journey	M = 3 years	From current to up to 3 years ago	N/A	Participant concerns were in 3 categories: information (diagnosis, treatment, fertility); treatment process (waiting, physical facilities, psychological support, staff); and survivorship (finishing treatment, ongoing health concerns, future directions)	Adequate (11.25)
Crawshaw et al.⁶¹ n = 16	31%	100	Median = 21 years (16–30)	Median = 15.5 years (13–20)	Fertility preservation	Median = 3 years (1–15 years)	Up to 15 years ago	N/A	Participants supported sperm banking and were satisfied with their level of understanding, recall and decision-making, although there was a lack of clarity regarding consent. Sperm banking professionals were less likely than oncology staff to achieve good rapport. Improvements to consent arrangements, facilitating written information and sharing of results were suggested	Good (12)
Crawshaw et al.⁵⁹ n = 38 (total sample)	35% (total sample)	45	Median = 21 years (16–30)	Median = 15 years (11–20)	Fertility preservation	Median for teens = 3 years (1–6); median for adults = 7 years (1–15)	Up to 15 years ago	N/A	There was strong support for being told about fertility preservation services at diagnosis. Women were more likely to report later distress from lack of fertility preservation services. Men found decision-making about sperm banking straightforward and were satisfied with their choice, regardless of whether they had banked sperm	Good (12)
Corbeil et al.⁶⁵ n = 6	Not stated	50	M = 25 years (19–30)	Not stated	General throughout the cancer journey	M = 17.5 months (2 months–7 years)	From current to up to 5 years ago	N/A	There was a need for information regarding how long treatment would last and the effectiveness and appropriateness of treatment. Family support was important	Adequate (8)
Thompson et al.⁴⁸ n = 8	6%	38	Not stated	M = 24.7 years (22–29)	General, but article focuses on transition off treatment	Mix of on and off treatment, time since diagnosis not stated	Could not be determined	N/A	There were three types of survivorship concerns: finishing treatment, ongoing health issues, and future directions (Same issues as in Palmer 2007)⁶⁹	Adequate (9.12)
Wilkes et al.⁵⁶ n = 18	25%	44	M = 36 years (23–42)	M = 22 years (4–32)	Fertility preservation	Survivors >5 years post-treatment. Time since diagnosis not stated	More than 5 years ago	N/A	At diagnosis, the focus was on survival rather than fertility preservation. Positive reports of the experience were related to the quality of information provided about fertility or, if possible, action was offered. Experiences differed based on age at diagnosis and gender. The information/action offered needed to be tailored to the patient's age, life stage, relationship status, and fears. Patients wanted information about fertility at diagnosis, for this to be presented sensitively and to be backed up with written or web-based resources or referral to a fertility specialist	Good (14.25)
Williamson et al.⁷¹ n = 22	Not stated	9	13–18 years	Not stated	No period specified	Interview participants: mix of on and off treatment, time since diagnosis not statedWeb participants: no information	Interview participants: currentWeb participants: could not be determined	N/A	Patients needed support to develop skills to deal with appearance changes and responses of others. They wanted information about what appearance changes to expect and tips for how to manage changes. They found it difficult to ask health professionals about appearance changes if this was not volunteered. There were different views about where information on appearance changes should come from: health professionals, other AYAs, face to face	Adequate (10)
Lombardo et al.⁴⁶ n = 7	Not stated	14	M = 16 years (11–18)	Not stated	Chemotherapy	Mix of on and off treatment, time since diagnosis not stated	From current up to 2 years ago	N/A	Health professionals played an important role in helping patients cope with treatment: the relationship with the treatment team allowed the patient to feel confident and receive emotional support; key skills for health professionals are empathy and compassion	Adequate (7.5)
David et al.⁴⁷ n = 4	57%	25	M = 22.25 years (20–24)	Not stated	Radiotherapy	Completed treatment <12 months ago, time since diagnosis not stated	Up to 1 year ago	N/A	Peer support was important to maintain identity and resume a normal life. There was variation between treatment centers in the amount of information provided. Little information was provided about external support services	Good (12.25)
Patterson et al.⁷⁰ n = 14	88%	43	M = 22 years (20–25)	M = 16 years (12–22)	No period specified	Completed treatment M = 3.8 years ago, time since diagnosis not stated	From current up to 5 years ago or more	N/A	Patient needs were grouped into 6 themes: information, healthcare provision, daily living, interpersonal support, identity renegotiation, and emotional distress	Good (12)
Stinson et al.⁷⁸ n = 29	Not stated	48	M = 15.1 years	Not stated	No period specified	M = 3.0 years (SD 3.4)	Up to 2 years ago	N/A	Patient needs were: disease knowledge and cancer care skills; knowledge and skills to support effective transition to adult care; delivery of adolescent-accessible healthcare services; and supports for adolescents with cancer	Good (12)
Fern et al.²² n = 11 (includes 4 consumer group members who were interviewers)	Not stated	45	16–29 years	13–26 years	No period specified	Completed 6 months to >5 years ago, time since diagnosis not stated	Up to 5 years ago or more	N/A	Key themes were: the life-changing impact of a cancer diagnosis, the provision of information, place of care, role of health professionals, coping strategies, importance of peers, need for psychological support, and life after cancer	Adequate (10.5)
Gibson et al.⁴⁴ n = 24	60% of those approached	58	M = 19.88 years (16–23)	∼16–24 years (diagnosed 2–4 months prior)	Before and during diagnosis	2–4 months	Up to 10 years ago	N/A	Experiences of the generalist healthcare systems (GPs): some responded swiftly, others required repeated visits; poor communication between services; waiting (for appointments, results, referrals). Entry into specialist care: sense of relief, confidence in specialist, sense of action and timeliness	Good (12.25)
Hershberger et al.⁶⁰ n = 27	Not stated	0	M = 28.7 years (SD 5.66, 19–40)	Not stated	Fertility preservation	M = 5 months (1–16)Relapse included (4)	From current to up to 2 years ago	N/A	The impact of treatment on fertility was learnt through multiple consultations with nurses and doctors. Patients often felt overwhelmed and this impacted their decision-making. Information was key to guiding decisions, and this required speaking to multiple doctors and searching the internet. Preferences for the amount of information varied. Trust and nonjudgmental attitude were key to the selection of a support person/sounding board	Good (13)
Wright et al.⁵⁷ n = 8	Not stated	63	Not stated	18–24 years	Fertility preservation	Finished treatment 2 months–4.5 years ago, time since diagnosis not stated	Up to 5 years ago or more	N/A	Young people received mixed levels of information/counseling on fertility before treatment. Young men aged 18+ generally had a positive experience. Young women tended to received incomplete information. Most survivors were unaware of their fertility status post-treatment	Adequate (7)
Tsangaris et al.⁷⁹ n = 20	66.7% of those approached	45	15–29 years	15–25 years	General questions throughout the cancer journey	Mix of on and off treatment, time since diagnosis not stated	From current up to 4 years ago	N/A	The most commonly reported needs were facility needs, information and communication needs, and social needs. The least common were psychological/emotional needs and physical and daily living needs	Good (12.75)
Enskar et al.⁶⁶ n = 10	22 eligible patients were contacted, 4 declined, and 10 were included using purposive sampling	30	M = 17.9 years (15–20)	M = 12.9 years (4–16), but all previously had either diagnosis or relapse when aged 13–20 years	General questions throughout the cancer journey	1.2–15 years. 3 previously had a relapse and 1 described as “recidive”	From recent to up to 5 years ago	Questions developed by the researchers for the study based on a list generated by health professionals in a previous study	Key themes were: the need for professional support throughout the process; the need for quality care (to be part of decision-making, interactions with hospital staff, information, privacy, waiting-room delays, and age-appropriate facilities); and identification (benefits of meeting others with similar experiences)	Adequate (9.38)
Zebrack et al.⁷³ n = 37 (results given for 26)	79%	Not stated	M = 31 years (19–44)	M = 23 years (15–32)	(1) At diagnosis and during treatment, and (2) off treatment (survivor ship)	Not stated. M = 8 years based on age at diagnosis and participation	Up to 5 years ago or more	N/A	AYAs and health professionals agreed on the importance of healthcare insurance and access to developmentally targeted care. AYAs ranked the importance of meeting other young people higher than health professionals. AYAs ranked the need to meet peers to be greater than the need for support from family and friends	Adequate (9.88)
Keegan et al.²¹ n = 10	Not stated	40	Not stated	M = 28 years (15–39)	Current needs and general questions about experience throughout treatment	M = 11 months (4–22)	From current up to 1 year ago	Questions developed by the researchers for this study. Information needs questions were adapted from another study⁹³	More than half the AYAs had unmet information needs relating to cancer returning and cancer treatments. Unmet service needs ranged from 29% for in-home nursing to 75% for a support group. The majority of AYAs who needed a pain management expert, physio/OT, mental health worker, or financial advice did not receive these services. Unmet information needs were associated with being older, male, nonwhite, of poorer health, and poorer quality of care	Good (12.37)
Kent et al.⁵³ n = 269	43%	63	Not stated	15–19 and 20–29 years	Current	M = 11 months (4–22)	From current to 1 year ago	As above	25% of AYAs reported an unmet need for how to talk about cancer, and 43% reported an unmet need for information on meeting peer survivors. Older participants were more likely to report a need to meet peer survivors (p = 0.03), and Hispanics were more likely to report a need regarding how to talk about cancer (p = 0.01). Poorer quality of care was associated with a need regarding how to talk about cancer (p < 0.01). Those reporting an impact of cancer on friends/relatives were more likely to report social information needs	Adequate (11.87)
Zebrack et al.⁹⁴ n = 296	57% of those completing the survey or 25% of those eligible	25	Not stated	15–29 years	General question throughout the cancer journey	Mix of on and off treatment, time since diagnosis not stated	From current to 1 year ago	N/A	Participants attributed levels of satisfaction with care to the availability and communication of information, the management of side effects, and the expediency and flexibility of treatments. Struggles with health insurance and finances were evident	Good (12.75)
Wakefield et al.⁴⁹ n = 19 (of 112 total consisting of 45 families)	34% of families approached	Not stated	M = 16.1 years (SD 2.2, 12–20)	M = 13.3 years (SD 2.6, 7–17)	Finishing treatment/shifting to follow-up care	M = 48.6 months (from correspondence with author)	M = 3 years (5 months to 5.5 years)	Questions developed by the researchers for this study	Most families did not recall a formal meeting in preparation for treatment completion: more recalled an informal acknowledgement. Survivors did not describe this as an unmet need, and 84% were satisfied with the amount of information provided. The most common sources of information on survivorship were treating oncologists (68%) and the hospital's annual conference (58%). The most common unmet information needs were fertility (27%) and preparation for completing treatment (16%)	Good (12)
Wakefield et al.⁸¹ n = 19 (of 70 total consisting of 22 families)	34% of families approached	68	M = 16.1 years (SD 2.2, 12–20)	M = 13.3 years (SD 2.6, 7–17)	Follow-up care	M = 48.6 months (SD 21.6, 13.2–78.6)	From current through to 5.5 years ago	N/A	25% of survivors said financial support was needed at the end of treatment. Only 3 had received psychological support post-treatment. Health professionals receiving the most positive appraisals from survivors were GPs (11 positive, 3 negative), oncologists (9 positive, 2 negative, 2 mixed), and ward nurses (8 positive, 1 mixed)	Adequate (11.75)

Time of survey administration.

M = Males.

GP, General Practitioner; HCP, healthcare providers; OT, Occupational Therapy.

Information regarding when participants took place in the research also varied, with some articles reporting time since diagnosis, some reporting time since treatment completion, and some not reporting this information. As Table 3 shows, 18 articles did not provide information regarding the time interval between diagnosis and study participation. Two qualitative and two quantitative articles reported the average interval between diagnosis and study participation as less than 6 months, while for five qualitative and three quantitative articles, the interval was between 2 and 5 years.

Most commonly, articles focused on a specific period of care (17 articles), with 13 articles assessing general experiences or needs throughout cancer care (Table 3). While fertility preservation was the most common specific area focused on (five quantitative articles from five studies and six qualitative articles from five studies), other areas included diagnosis,^44,45 chemotherapy,⁴⁶ radiotherapy,⁴⁷ and transitioning to follow-up care.^48,49

While two studies reported in two articles used a validated survey tool,^50,51 two studies reported in three articles adapted questions developed by others.^21,52,53 However, the survey tool or set of questions used differed between studies.

Care experience findings

Thirty-four articles from 30 studies reported on AYAs care experiences, of which 22 were rated “adequate” for quality and 12 were rated “good.” Findings from articles rated adequate or good were similar. As articles from the same study often reported on similar care areas, studies rather than articles are reported. Across the three study designs, the most common areas examined were fertility (14/30), communication/information delivery (13/30), staff skills/expertise (11/30), age-appropriate treatment setting (8/30), and peer contact/support (8/30) (Table 5).

Table 5.

Number of Articles Reporting Experiences and Needs in Different Care Areas, by Research Method

	Type of care experiences reported				Type of needs reported
	Quantitative (n = 8)	Qualitative (n = 19)	Mixed methods (N = 3)	Total (n = 30)	Quantitative (n = 10)	Qualitative (n = 18)	Mixed methods (n = 3)	Total (N = 31)
Communication/information	1	10	2	13	5	11	3	19
Fertility	5	9	0	14	7	7	3	17
Emotional support	1	3	2	6	6	9	3	18
Peer contact/support	2	4	2	8	4	10	2	16
Age-appropriate setting	2	5	1	8	0	7	0	7
Family communication/support	1	1	0	2	3	3	2	8
Practical assistance	0	1	0	1	2	4	2	8
Educational assistance	1	1	1	3	2	4	—	6
Decision-making	1	1	1	3	1	3	1	5
Staff skill/expertise	0	9	2	11	1	3	1	5
Services for physical well-being	1	0	0	1	3	1	1	5
Delays in diagnosis/waiting for treatment	0	6	0	6	0	1	1	2
Care coordination	0	1	0	1	—	1	0	1
Overall care	1	1	1	3	1	0	0	1
Spiritual input/support	—	—	—	—	2	1	1	4
Transition to follow-up care	—	—	—	—	0	1	—	1

In the area of fertility, most studies found that young people received insufficient information about preservation options or the impact of treatment on fertility,^54–57 with females more likely to find this information lacking or confusing.^56–60 Of the five quantitative studies examining fertility experiences, two focused on sperm banking experiences and two focused on women's experiences of discussing fertility preservation and decisions. Both qualitative and quantitative studies reported that fertility discussions were associated with distress and embarrassment^{54,56,59–62} and five found that emotions impacted on some AYAs’ decision-making.^{54,56,58,60,63} While some young men found the sperm banking process straightforward,^56,57,64 other studies reported more difficult experiences, with sperm banking facilities seen as inadequate, difficult to access, and insensitive.^54,61,63 While the presence of parents at sperm banking facilities was a source of embarrassment for some,^54,59,61,63 two studies reported that young people wanted their parents to be involved in fertility discussions and decisions.^59,64

Communication experiences were most commonly examined through qualitative studies. Communication/information issues included the importance of the HCP in providing clear age-appropriate information about the disease, treatment, and implications for daily life,^22,65–70 and the impact of uncertainty on patient well-being.^65,67,68,70 The availability of information relating to AYA-specific issues (e.g., fertility, appearance changes, education, finance) was variable.^22,47,62 Aspects of communication delivery were also highlighted, with HCP qualities of listening skills, sensitivity, empathy, and trust regarded as key facilitators of information exchange.^22,46,48,66 Two studies suggested that young people can be reluctant to raise new issues with HCPs, relying instead on the information provided by their treatment team.^22,71

The mainly qualitative studies examining staff skill/expertise focused on whether HCPs had age-specific knowledge and experience. Participants placed importance on being cared for by staff that were knowledgeable about AYA cancers and treatment.^{65,67,72–74} This was often a key prerequisite for patient trust and confidence.^22,65,68,75 HCP's understanding of AYAs’ psychosocial needs was also highly valued.^62,68

All study types examining age-appropriate treatment settings tended to focus on the inpatient experience. Key topics included access to facilities for recreation/distraction, relaxation, and studying; opportunities to mix with other young people with cancer; and the importance placed on privacy.^{22,51,62,66,67,75,76} The benefits of an AYA-friendly schedule were also discussed (e.g., sleep and waking times, visiting hours).^62,76

Only one quantitative study used a validated questionnaire to explore AYA care experiences. Reynolds et al.⁵¹ used the Youth Satisfaction Questionnaire,⁷⁷ which was originally developed for 9–18-year olds attending mental health services. The scale combines standardized items about overall satisfaction with researcher-developed items tailored to the treatment setting. Reynold's findings on the comparison between specialist AYA and other types of services are discussed in more detail below.

Unmet needs findings

Thirty-five articles from 31 studies reported the unmet needs of AYAs with cancer, with 21 articles rated “adequate” for quality and 14 rated “good.” Findings from articles rated “adequate” and those rated “good” were similar. The most common needs examined related to communication/information delivery (19/31), emotional support (18/31), fertility (17/31), and peer contact/support (16/31) (Table 5). Regardless of research design, studies commonly suggested that needs change as AYAs move through diagnosis and active treatment and into survivorship.^{3,22,44,52,65,67–70,74,75,78}

Studies found that AYAs expressed a need for honest, timely, age-appropriate information in numerous areas, particularly diagnosis, fertility, treatment, health/lifestyle, and survivorship.^{3,21,22,52,65,68–70,72,73,78,79} The need for information to help young people prepare for their experience was a repeated theme.^{47,65,69–72} Studies suggest that higher unmet information needs are associated with greater distress and lower overall satisfaction with care.^21,50,68,80

Information was a key issue in the area of fertility, with young people having a need for detailed information about their fertility preservation options and the processes involved at diagnosis.^{21,49,52,54,56,57,69,70,80} Five studies reported that young people had a need for this information to be tailored to their age, developmental stage, and relationship status, to be provided in a sensitive way, and to be accompanied by written/online materials and/or referral to fertility services when appropriate.^{56,57,59,61,69} The need for age-appropriate preservation services^{38,54,56,57,59} and fertility information/support for survivors was also discussed.^49,56,57,73

Quantitative and qualitative studies reported that AYAs had a need for assistance with a range of difficult feelings, including fear and residual trauma, worries about family and identity, guilt, and uncertainty.^{22,50,67,70–72,79} Emotional support needs were most commonly reported in relation to diagnosis, decision-making and fertility, and transitioning off treatment.^{3,22,43,48,50,60,67,69,72} Opinions on the need for professional help varied, with articles from five studies reporting high need in this area,^{21,22,43,50,80} while other studies found AYAs preferred to turn to friends or family for support.^{70,73,74,79,81} For those wanting psychological services, access was often limited, particularly for young people in adult treatment settings and for post-treatment survivors.^69,80,81

The 16 studies examining peer support needs highlighted the importance AYAs place on meeting other young people with cancer. Qualitative and mixed methods studies reported that AYAs thought peers were a source of emotional support, information about what to expect from treatment, and provided a way to reduce feelings of isolation during the transition to follow-up care.^{22,66,70,72,79} The preferred setting for interacting with peers depended on where AYAs were in the care trajectory with those currently undergoing treatment valuing the opportunity to mix with other young people in the ward or in waiting rooms, with these interactions a major advantage of AYA-specialist services.^22,75,76,79 AYAs also reported a need to maintain connections with their existing friends, with some studies reporting a need for guidance on how best to maintain links and communicate their experiences to healthy peers.^{3,47,53,71,78}

Only one quantitative study used a validated questionnaire to explore unmet needs.⁵⁰ This study used the adult Supportive Care Needs Survey-34 (SCNS-34)⁸² that examines the presence of unmet needs in the past month.

Influence of AYA-specific treatment centers

Eight articles from six studies examined the influence of being treated at an AYA-specific treatment center on care experiences or unmet needs. Three “adequate” qualitative and one “good” quantitative article reported results only for AYAs treated at a specialist unit,^50,57,76,83 while three “adequate” qualitative and one “good” quantitative article compared AYAs treated at a specialist unit to those treated in adult or pediatric settings.^22,51,62,84 A qualitative study of an AYA specialist unit reported in two articles^76,83 suggested that patients had a very positive experience, with the ward providing a sense of mutual support, access to experts skilled in both cancer care and working with young people, and age-appropriate information. However, both a quantitative⁵⁰ and a qualitative study⁵⁷ indicated that patients in these wards still have unmet needs. While two qualitative studies reported in three articles suggested those treated on specialist wards had better care experiences than those in other settings, including receiving age-appropriate information, information on fertility preservation, and access to recreational facilities,^22,62,84 a quantitative study did not find any difference in care satisfaction levels between AYAs treated in specialist wards and those treated in nonspecialist wards.⁵¹ However this quantitative study did find that those treated in a specialist ward were more positive about aspects of the physical setting and access to peers than those treated in a nonspecialist ward.⁵¹

Discussion

Following an exhaustive literature search, we identified 45 “adequate” or “good” quality articles that assessed the unmet needs and care experiences of AYAs with cancer. Most commonly, studies used a qualitative methodology to examine the needs or care experiences of a heterogeneous sample of AYAs. Participants’ age varied considerably across studies, as did the time from diagnosis to study participation, with many studies reporting experiences that may have occurred up to 5 years previously. Few studies used standardized survey tools to assess either unmet needs or care experiences, and no survey tool was used in multiple studies. These features coupled with the large number of qualitative studies meant it was not possible to provide estimates of the level of unmet needs or patient experiences. However, despite the differences in study designs, general themes could be identified, which suggested the most common needs were for timely and age-appropriate fertility information and services, access to age-appropriate information, care facilities and support (including peer support), and HCPs with AYA expertise.

Previous authors have identified fertility as a key issue for AYAs,^1,27 and our review confirmed that this is an area where young people, particularly young women, report unmet needs and poor care experiences. This is consistent with the conclusions by Quinn et al. that young women are more likely to report distress in relation to fertility issues.⁸⁵ The studies we examined highlighted the need for the early provision of information about the risk of infertility associated with different treatments, clear communication about fertility preservation options, and access to age-appropriate fertility services, and fertility-related follow-up after treatment. Guidelines for the care of AYAs with cancer need to ensure that fertility preservation is addressed in the post-treatment phase as well as at diagnosis and during treatment.

Another recurrent finding from the articles reviewed was the importance of age-appropriate services for AYAs, most of whom are treated in medical systems where care is divided into pediatric or adult centers.²⁴ The need for age-appropriate information through all stages of the cancer care journey was a common theme, with some evidence that this may be beneficial for emotional well-being. A recent review of doctor–patient relationships in 12–18-year olds also emphasized the importance of tailoring information to the young person's developmental stage,⁸⁶ while another posited a relationship between information/communication and psychosocial well-being in AYAs.²³ The need for age-appropriate emotional support was another common theme. Other reviewers have highlighted the importance of peer contact and support for psychosocial well-being.^1,23,28,87 Our review suggests that AYAs should be given opportunities to interact with other young cancer patients, be supported to utilize their existing social support network, and have access to age-appropriate psychosocial services if these are needed.

Our review also found that young people express a need for treatment facilities to be appropriate to their age and a need to be treated by HCPs with AYA-specific expertise. This is consistent with other reviews that have emphasized the benefits of social, recreational and educational facilities,⁷⁹ and the potential benefits of an expert treating team for AYA adherence to treatment, survival, and psychosocial functioning.^2,88 Several countries have now developed AYA-specific cancer services, which can range from independent inpatient units to multidisciplinary teams attached to adult or pediatric hospitals.^1,88 It has been suggested that specialist units allow young cancer patients to access AYA-specific facilities and peer support.^24,25 We found few studies that directly compared the needs and experiences of patients treated in specialist AYA settings to those treated in general pediatric or adult services. More research is needed to examine whether AYA-specific services are living up to their promise of delivering better care experiences for AYAs. If future research in this area utilized standard assessment tools and provided details of the model of care delivered, findings from different studies could be combined to allow greater understanding of the aspects of care that work to improve AYAs’ care experiences.

Our review highlighted a number of methodological issues that could help improve future research. With a median sample size of 52 participants, most quantitative studies reviewed had insufficient statistical power to examine associations between variables and large confidence intervals would be associated with any estimates found. Larger sample sizes are needed if reliable estimates of the level of need or care experiences are to be produced. Since AYAs make up a relatively small proportion of cancer patients,⁸⁹ greater collaboration between treatment settings and jurisdictions will be needed to ensure quantitative studies have adequate sample sizes. The age range of participants in the different studies was broad, with some focusing on adolescents and some focusing on young adults. There is a need for a more consistent definition of the age range that defines “AYA.” While agreeing on the age range may be controversial,⁹⁰ this is emerging as an issue with Quinn et al. identifying similar problems in the Quality of Life literature.⁸⁵ Increased use of standardized age-appropriate measures would also facilitate comparisons between studies, care settings, diagnoses, and treatment stages. Many studies we reviewed assessed care experiences that may have happened before 5 or more years for study participants. The extended period between diagnosis/treatment and assessment increases the possibility that recall bias and survival bias influence findings. Studies that assess care experiences and unmet needs closer to treatment are needed. Longitudinal studies are also needed to provide more reliable information on how patient needs and experiences change over time. Incorporating age-appropriate PREMs and PROMs into prospective clinical trials may assist in gathering longitudinal data from larger samples of AYAs while also allowing patient experiences to be related to treatment adherence and survival outcomes.

This review has a few limitations. First, we selected only those studies that obtained reports directly from AYAs. This means that the views and experiences of family members, the experiences of young people as told by their families and partners, and the views of HCPs were excluded. Second, as we included only articles published in English, research from non-English speaking countries was likely to be excluded. Third, we did not assess whether studies examined the impact of demographic factors (e.g., socioeconomic status, residential location [urban vs. rural]), on care experiences or unmet needs. As understanding whether there is equitable access to different treatment and supportive care services is important, future work is needed in this area. In addition, we did not examine the impact of age or developmental stage on care experiences or unmet needs. Finally, differences in the age of study participants, inconsistent reporting of information regarding participant characteristics, and the lack of consistent measures across studies precluded any quantification of results across studies.

Despite these limitations, this review highlights consistent themes regarding care experiences and needs from both qualitative and quantitative studies that strengthen the case for age-appropriate care for AYAs. A priority for future research is utilizing AYA-specific, standardized survey tools to evaluate specialist AYA services and determine whether they make a difference to AYAs' care experiences. Use of standardized tools would also allow results from studies of different models of care or different countries to be compared. However, as patients’ care experiences and unmet needs are only one aspect of understanding the overall quality and effectiveness of care, understanding the relationship between PREMs and more objective measures of medical and psychosocial outcomes is also needed. The AYA quality assessment measures currently under development^20–22 have the potential to be valuable tools in these endeavors.

Footnotes

Acknowledgment

This work was supported by a project grant from the National Health and Medical Research Council of Australia (NHMRC) (APP1012250).

Disclaimers

The authors attest that this work is original, that they are the authors, and that it has not been published and is not under consideration for publication elsewhere.

Author Disclosure Statement

No competing financial interests exist.

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