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

Introduction

Adolescent and young adult (AYA) cancer survivors experience many unique challenges and quality of life (QoL) effects that persist beyond cancer diagnosis and treatment, including issues with infertility,^1,2 body image dissatisfaction,³ difficulty establishing relationships,^3,4 and many other aspects of physical and social functioning.^5–7 Health-related QoL can be defined as a broad, multidimensional concept that usually includes subjective evaluations of both positive and negative aspects of life.⁸ Overall, AYA cancer survivors are at least as likely or more likely to engage in risky health behaviors like smoking, alcohol use, and unprotected sex when compared with the general population.^9,10 In addition, recent literature suggests that some health behaviors, such as a lack of physical activity, poor nutrition, lack of sun safety, and pain reliever addiction, are more common in AYA cancer survivors than in their healthy peers or siblings.^11,12

While the National Cancer Institute¹³ and the LIVESTRONG Foundation¹⁴ define AYAs as those aged 15–39 years, definitions vary among other organizations and AYA literature, ranging from as low as 12 years¹⁵ to as high as 45 years.¹⁶ Individuals in the lower bracket of this age range are often transitioning to independence and autonomy from parents, including the development of their own social and financial responsibilities, joining the workforce, and establishing a personal set of values and goals.^17–19 A cancer diagnosis during this multifaceted phase of psychosocial and physical growth can cause significant disruption to major developmental milestones, leading to reduced QoL.²⁰ Older AYAs may experience psychological distress due to interruptions to family planning,²¹ romantic and/or intimate relationships,²² and accumulation of financial burdens.²³

Due to continuous improvements in technology and cancer treatments resulting in improved survival rates, the identification of late effects, survivorship issues, and QoL is moving to the forefront of cancer research. Recently, there has been a focus in the literature on QoL factors impacting the AYA population and identification that these factors are vastly different from those for older cancer patients/survivors. To develop targeted, developmentally appropriate QoL interventions for AYA populations, a review of the literature is required. The identification of the most prominent factors affecting AYA cancer survivors will aid in developing meaningful and relevant programs. The goal of this systematic review was to identify key psychosocial factors impacting QoL in AYA oncology populations. Further, we examined psychosocial factors in relation to age, stakeholder perceptions, AYA perceptions, and outcomes (eg, QoL, adjustment).

Methods

Search strategy and study selection

A review was conducted using the PubMed database and PRISMA guidelines, including all peer-reviewed journals, without limits on publication date. The search terms included combinations of these phrases or keywords: “adolescent and young adult or AYA” AND “health outcomes OR quality of life OR psychology” AND “neoplasm OR cancer OR oncology”. PsycINFO and CINAHL databases were reviewed for additional articles. The following selection criteria were then applied: studies conducted exclusively with AYA survivors or stakeholders (parent[s] of AYA survivors, siblings of AYA survivors, caregivers, and health care providers working with AYA populations); outcome variables were any psychosocial factors impacting QoL in AYA populations, including perspectives from both AYA populations and stakeholders (excluded studies focusing on biological or medical outcomes, as well as studies focusing on improving research participation); studies published in the English language; and primary research (excluded review articles, conference abstracts, editorials, commentaries, correspondence, and case reports). The review was not limited to a specific age range; all primary research articles that defined the population of interest as “AYA” were eligible for inclusion. The review included mixed methods, quantitative, and qualitative studies.

A total of 97 articles were identified in the database search. Figure 1 presents a summary of the search strategy. Articles were initially screened based on title and type of article. After excluding unrelated literature and systematic reviews (20), commentaries (13), and letters to the editor (one), abstracts and full texts of 63 articles potentially meeting the inclusion criteria were screened for eligibility. Twenty-eight articles were eliminated from the review for the following reasons: strategies for improving AYA research participation (seven), insurance coverage data (two), reported only biological or medical outcomes (12), sperm banking success rate data (one), process papers on development of tools or programs (three), German language (one), report from a workshop on AYA QoL (one), and internet use data (one). The search was complemented by manually searching the reference lists of relevant articles in the databases, including reference lists of review articles focusing on AYA QoL issues. A total of 35 articles were included in this review (Table 1).

Figure 1 Flow diagram illustrating the search strategy for articles included in the review.

Table 1 Articles included in the review Note: †Type A: quantitative methods; type B: qualitative methods, type C: mixed methods. Abbreviations: AYA, adolescent and young adult; M, male; F, female; BRFSS, Behavioral Risk Factor Surveillance System; QoL, quality of life; CI, confidence interval; FACT-BMT, Functional Assessment of Cancer Therapy-Bone Marrow Transplantation; GVHD, graft-versus-host disease; SF-36, 36-Item Short-Form Health Survey; 2MWT, 2-minute walk test; HAP, Human Activity Profile; HCT, hematopoietic cell transplantation; FACT-G, Functional Assessment of Cancer Therapy – General; TOI, trial outcome index; AYA HOPE, Adolescent and Young Adult Health Outcomes and Patient Experience Study; NCI, National Cancer Institute; SEER, Surveillance, Epidemiology, and End Results; EORTC QLQ-C30, European Organization for the Research and Treatment of Cancer Quality of Life Questionnaire-Core 30; TAC, talk about cancer; MPS, meet peer survivors; SF-12; 12-Item Short-Form Health Survey; HR-QoL, health-related quality of life; BSI-18, Brief Symptom Inventory-18; PTG, post-traumatic growth; PTSS, posttraumatic stress symptoms; RIM, Resilience in Illness Model; OR, odds ratio; N/A, not applicable; SD, standard deviation; CDM, career decision making; HCBI, Health Competence Beliefs Inventory; PCL-C, Posttraumatic Stress Checklist-Civilian Version; PTSD, posttraumatic stress disorder; REP, representative sample; STAI-S, State-Trait Anxiety Inventory-State Form; SCT, stem cell transplant; TMV, therapeutic music video.

The criteria used to assess the methodological quality of qualitative research papers included in this review were based on two sets of guidelines for appraising qualitative research.^24,25 Two reviewers assessed each paper for the following items: 1) clearly described aims and objectives; 2) detailed information on sampling, data collection, and analysis; 3) context of study described; 4) credible data analysis methods; 5) main results presented clearly; 6) quotations supported the results; 7) innovative and credible interpretation of results; 8) study limitations included; and 9) conclusion presented a synthesis of the study and proposed further research. Each reviewer assessed the presence or absence of these items with a rating of 0 or 1 for a maximum score of 9. Disagreements or discrepancies in scoring between reviewers were discussed until a conclusion was reached. A final assessment combining both reviewers’ results placed each paper into these categories: high quality (a score of 8 or higher), medium quality (a score of 5–7), and low quality (a score of 1–4). The papers included in this review were all placed in the high or medium quality.

The criteria used to assess the methodological quality of quantitative research papers included in this review were based on two sets of guidelines for appraising quantitative research.^26,27 Two reviewers assessed each paper for the following items: 1) study design identified and appropriately applied; 2) study sample representative of the group (response rate included); 3) use and appropriateness of control group; 4) confounders discussed and/or controlled; 5) valid data collection tools; 6) reliable data collection tools; 7) discussion of dropouts and study withdrawals; 8) appropriate statistical methods; and 9) influence of negative factors on study results credibility. Each reviewer assessed the presence or absence of these items with a rating of 0 or 1 for a maximum score of 9. Disagreements or discrepancies in scoring between reviewers were discussed until a conclusion was reached. A final assessment combining both reviewers’ results placed each paper into these categories: high quality (a score of 8 or higher), medium quality (a score of 5–7), and low quality (a score of 1–4). The papers included in this review were all placed in the high or medium quality.

Data synthesis

Eligible studies were classified into two categories: AYA perceptions and stakeholder perceptions. Data from each study included in this review are presented in Table 1. Key information was collected on study origin, QoL measures, definition of AYA, study population, cancer type, sample size, aims, methods, outcomes and measures, and key findings. All authors reviewed the articles and confirmed the inclusion of selected articles for this review. The information included for each article was reviewed by the authors to ensure congruence of information extracted.

Results

Study information

The studies used a variety of age groupings to classify AYA. The youngest age used was 10 years and the oldest 44 years. The majority of studies used the range 15–39 years (n=9). The most common lower age limit was 15 years (n=15) and the most common upper age limit was 39 years (n=11). The study populations were primarily AYA cancer survivors (n=26) followed by stakeholders (clinicians or parents) (n=5) and a combination of survivors and stakeholders (n=4).

Nineteen studies used quantitative methods, 13 studies used qualitative methods, and three studies used mixed methods. The majority of studies examined all or most cancer types (n=21). Others were specific to combinations of sarcoma, brain, and hematological cancers (n=6); stem cell transplant patients (n=2); breast and gynecological cancers (n=1); hematological cancer (n=5); and testicular cancer (n=1). Study stages of data collection varied from time of diagnosis, during active treatment, up to 18 years posttreatment, deceased, and unspecified stages. The sample sizes of the studies ranged from 8,375 to eight. Seven studies used the Surveillance, Epidemiology, and End Results (SEER) cancer registry with a sample size of 523 (ie, the same data set was used).

Study aims

For the majority of studies, the primary goal was to describe or characterize the QoL or psychosocial impact or examine need for information or social support in relation to QoL of AYA survivors (n=16). Two studies examined QoL in relation to fertility and sexuality. Four studies examined QoL in relation to theoretical models or constructs (posttraumatic stress disorder, positive growth, optimism, and resilience).^1,40 Four studies examined parents’ perceptions of their AYA son’s or daughter’s QoL. Provider perceptions of AYA QoL were explored in two studies. Two studies inspected QoL in AYA transplant populations. The remaining studies examined QoL of AYA compared with matched healthy controls (n=1), work and education (n=1), end-of-life issues (n=1), and the impact of music (n=1).

AYA perceptions

AYA cancer survivors were more likely to have “worse” or impaired QoL compared with the general population, regardless of other demographic factors.^28–33 However, AYA transplant patients reported QoL equal to or better than older transplant patients.³⁴ AYAs described both positive and negatives experiences with their medical care, the educational information received, and the supportive care services.^6,23,35–39 Respondents typically wanted more information about side effects, alternative treatment options, fertility and childbearing options, and long-term survivorship care.^1,23,35,40 Females were more likely to report distress or poor QoL related to fertility issues.^1,29 AYAs reported ongoing struggles and fears related to the cancer experience, including financial problems and negative emotions related to death, body image, and perceived stigma.^3,11,40,41 Terminally ill AYAs in particular experienced substantial physical and psychological symptoms throughout end-of-life stages.⁴² Treatment type, lack of insurance, and quitting school or work after diagnosis had a negative impact on work/educational outcomes for survivors.^3,43 Relationships with family, friends, other cancer survivors, and church as primary sources of support, when present, contributed to improved QoL.^23,37,40 Belonging to a support group and engaging in physical activity were associated with reduced distress.^36,40

Stakeholder perceptions

Although health care professionals were likely to underestimate or misjudge the health preferences and support needs of AYAs, these perceptions varied across disciplines and levels of experience.^44,45 Health care professionals agreed on the challenge of addressing unique developmental characteristics of this population.^44,45 Siblings of AYA survivors experienced high levels of psychological distress that were comparable with the AYA survivor and much greater than the general population.³⁰ Similarly, parents and caregivers of AYAs reported negative QoL issues such as ongoing negative emotions related to diagnosis and discussion of diagnosis.⁴¹ Connectedness and communication were perceived as positive, and the presence of the “nuclear family” led to greater QoL.⁴¹ Maternal beliefs related to health care influenced the mother’s well-being and involvement in the AYA’s health care; however, the impact of parental involvement on the offspring’s development and autonomy was not reported.⁴⁶

Discussion

This systematic review sought to identify key psychosocial factors impacting QoL in AYA oncology populations, specifically factors in the context of age, stakeholder perceptions, AYA perceptions, and outcomes (eg, QoL, adjustment). There is a paucity of research from randomized controlled trials or interventions providing evidence of factors affecting QoL in AYA cancer patients or interventions that may improve QoL. Results from this review highlight that AYAs report lower QoL than their healthy peers and older cancer survivors. There is a significant amount of unmet needs in the AYA population, including long-term survivorship care, fertility preservation, and mental health services. Results also show that AYAs receive insufficient information on cancer impact on fertility, body image, relationships, and financial assistance. Parents, siblings, and partners of AYA with cancer also report varying positive and negative experiences with information and communication needs and distress. Although health care providers tend to underestimate or misjudge the health preferences and support needs of AYAs, they appear to agree that AYA cancer patients present a unique challenge that most institutions are not prepared to handle.⁴⁴

Some organizations have developed guidelines specific to AYA populations. The Canadian health care system has developed a set of AYA recommendations to improve QoL.⁴⁷ These include the following sections: 1) Active Therapy and Supportive Care, 2) Psychosocial Needs, 3) Palliation and Symptom Management, 4) Survivorship, 5) Research and Metrics, and 6) Awareness and Advocacy. In addition, the National Comprehensive Cancer Network has issued clinical practice guidelines for AYAs with cancer.⁴⁸ These guidelines include: 1) management of AYA patients with cancer: special considerations, 2) psychosocial and behavioral issues, 3) survivorship issues, and 4) palliative and end-of-life care.

There is clear agreement on AYA psychosocial needs and survivorship issues across these two guidelines. Most health care institutions have recognized the need for improvements in AYA care and are developing AYA-specific programs to approach this area of need.⁴⁹ AYA-specific programs should include a multidisciplinary team with specialized skills, including an “AYA champion” (a highly motivated individual with a professional interest in cancer who is often affiliated with complementary programs such as AYA oncology or survivorship), mental health professionals, peer support groups, reproductive endocrinologists, and religious and legal counsels, among others.⁴⁹ In addition, the AYA population represents a significant percentage of patients and is a source of revenue for both pediatric and adult institutions.⁴⁹ Creating AYA-specific programs is a benefit for both the population and health care institution.

Evidence from this systematic review suggests there is a wide age range used for describing the AYA population and an equally wide range of measurement strategies for assessing QoL. Nightingale et al⁵⁰ reviewed the literature on health-related QoL in young adult survivors of childhood cancer and concluded that the traditional domains assessed in QoL are not comprehensive enough for the AYA population. Huang et al⁵¹ examined the psychometric properties of QoL instruments typically used with the AYA population. The study concluded poor discernibility between homogeneous and heterogeneous domains on the instruments in relation to AYA survivors. Quinn et al⁵² conducted qualitative interviews with 30 participants from the Nightingale et al⁵⁰ study and identified three key content areas missing from traditional QoL measures. These areas included perceived sense of self, relationships, and parenthood. The study further noted that existing QoL instruments do not take into account the impact of a cancer diagnosis on the interrelationship between emotional development and dependence on caregivers.

Limitations

Our study has several limitations. This search did not assess the quality of studies included in the review; thus, all articles are treated as equally credible, having met the criteria of being published in a peer-reviewed journal. In addition, there was significant variation in the design and methods of studies included in this review. The search strategy was limited to three databases and restricted to English language studies only, which may be a further limitation of this review. Due to methodological variations across studies focusing on the AYA population, it can be problematic to generalize results.

Conclusion

The literature is lacking in sufficient evidence-based interventions to improve QoL in AYA cancer populations. Further, the tools to adequately measure QoL in this population are also unsatisfactory, and in several cases do not comprehensively target QoL domains relevant to AYA populations. The literature, however, consistently shows agreement regarding the unique needs of this population, indicating a trend toward health care standardization within age ranges or life stages. We suggest the need for AYA-specific programs in health care institutions that comprise a multidisciplinary team that addresses all the unique medical and QoL needs of AYAs.

Disclosure

The authors report no conflicts of interest in this work.

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