In our study of recently diagnosed AYA cancer survivors, we found that having unmet service needs was strongly associated with lower HRQOL. Furthermore, we identified high levels of unmet service needs in this population, with 35% (n
172) of survivors reporting at least one service need (Keegan et al., 2012
). Individual service needs ranged from approximately 15% for financial (n
77) or mental health professional (n
74) services to 2% (n
10) for nursing services in the home. Several specific service needs were associated with HRQOL outcomes and even having one unmet service need was associated with decrements in overall HRQOL, physical, emotional, and social functioning, fatigue, and work/school functioning, as well as overall mental health. Specific needs to see a physical or occupational therapist, a mental health professional, a pain management expert, spiritual/religious counselor, or to participate in a support group were all associated with worse HRQOL domains. Needing mental health services had the strongest associations with worse HRQOL outcomes, while the need for physical or occupational therapy was most consistently associated with poorer functioning across HRQOL domains. Overall, this study extends previous research on unmet service needs (Zebrack, 2008
; Keegan et al., 2012
; Zebrack et al., 2013
) and identifies a critical need to increase services for recent AYA cancer survivors as a means for improving both quality of life and functioning during a highly transitional period of life.
A prominent finding of our study was that having unmet needs for mental health professional services had the strongest associations with outcomes (worse: overall HRQOL, overall mental health, fatigue, emotional functioning, social functioning and work/school functioning), consistent with a recent review (Kahalley et al., 2012
). Our finding that 15% of AYA survivors have unmet mental health needs is lower than a study of 215 recently diagnosed AYA cancer patients, where unmet mental health needs ranged from 13.4% in 14- to 19-year-olds to 38.5% of 30- to 39-year-olds (Zebrack et al., 2013
), but higher than needs in adult cancer survivors nationally (11.7%) (Hewitt and Rowland, 2002
). Individuals indicating a need for support groups reported worse HRQOL on the same domains as those having unmet mental health needs, and also on the physical functioning subscale. However, individuals endorsing needs for mental health and those endorsing support group services differed somewhat, as the correlation between these two service needs was modest (r
0.47; data not shown).Though not surprising that needing mental health services or support groups are associated with worse emotional or social functioning, they are also associated with fatigue and school/work functioning, both of which can have detrimental effects on everyday life activities and adjustment back to normal routines. Studies of pediatric and young adult cancer survivors show that cancer and its treatment have a strong negative impact on work/school (Nagarajan et al., 2003
; Parsons et al., 2012
); the current study suggests that having better access to mental health support services, or finding ways to increase AYAs’ service utilization, has the potential to partially ameliorate this impact.
While increasing awareness and promoting the use of mental health services to AYA cancer survivors may improve HRQOL, the United States is currently experiencing a severe national shortage of mental health providers, particularly for adolescent psychiatry (Thomas and Holzer, 2006
; Masri et al., 2008
). Moreover, until recently, mental illness was a criterion that could be used by insurers to deny coverage under the “pre-existing condition” clause (Hyde, 2010
). However, under the Affordable Care Act, mental health services will be covered as part of the essential benefits package. As a result, future studies should examine how these policies influence the accessibility and affordability of mental health services for AYA cancer survivors as well as their impact on HRQOL.
Another strong finding in the current paper was that having unmet needs for physical/occupational therapy was associated with poorer outcomes across all HRQOL domains examined except mental health. Though only 9% of the AYA participants in the current study reported unmet physical/occupational therapy service needs, other studies of adults with cancer have reported much a higher prevalence of 30–43% (Thorsen et al., 2011
; Holm et al., 2012
). Despite a growing appreciation for comprehensive rehabilitation services for cancer survivors (Alfano et al., 2012
), physical and occupational therapy utilization rates are likely lower than optimal among AYAs. Young adult survivors of childhood cancers have been found to have low utilization rates of physical therapy and chiropractic use (Montgomery et al., 2011
). Future studies should consider the large impact that physical and occupational therapy can have on a variety of health outcomes in AYA, beyond physical functioning.
Our finding that unmet pain management needs were associated with worse overall HRQOL, physical and social functioning are consistent with observations in adult populations. Pain is among the most common cancer symptoms, and a meta-analysis has shown that 33–70% of adult cancer patients report pain symptoms ranging from treatment-related pain to lingering pain in survivorship (Van Den Beuken-Van Everdingen et al., 2007
; Valeberg et al., 2008
). When pain is unaddressed patients and survivors can experience a negative impact on a range of physical and psychosocial outcomes, such as diminished range of motion and mobility, depressive symptoms, ability to focus, and reduced coping with day to day activities (Institute of Medicine, 2008
; Green et al., 2011
). While there are estimates that 80–90% of cancer-related pain can be controlled by medication (Stjernsward and Teoh, 1990
), barriers limit the ability to identify a need for pain management during cancer treatment or survivorship. Previous research has identified a range of psychosocial barriers that may limit help-seeking related to pain in AYAs such as a fear of addiction to pain medications and concern that social activities may be restricted if pain were reported (Ameringer, 2010
). To address some of these concerns, several studies in pediatric and adolescent cancer patients have suggested that complementary and alternative medicine approaches, including acupuncture, meditation, massage, or aromatherapy, may be effective in reducing procedural pain and patient distress (Landier and Tse, 2010
). Indeed, Zebrack et al. (2013
) reported that 30% of AYAs reported unmet need for complementary and alternative health approaches. However, to fully address pain in the AYA population, an open dialog between providers and patients should be encouraged to identify the most effective approaches to measuring, discussing, and alleviating cancer-related pain.
Our study also showed that unmet needs for religious/spiritual counseling was associated with worse overall mental health and emotional functioning. Prior research suggests that spirituality is associated with better well-being among cancer patients (see Visser et al., 2010
for a review). It is possible that those experiencing the greatest emotional and overall mental health deficits are looking for ways to ameliorate the negative impact of their cancer on their emotional and mental health, with spiritual/religious counseling being one potential avenue. Alternatively, the side effects and logistics regarding cancer treatment may have disrupted usual participation in spiritual or religious services. In either case, there is a need to better provide spiritual counseling to AYA cancer patients who need it.
Results from this study highlight the need to make developmentally appropriate interventions available and accessible to AYAs with cancer. For example, there may be at-risk subgroups by developmental stage related to age at diagnosis, financial independence, employment and insurance status, among other areas. In recent years, AYA-focused clinical programs have developed (Ferrari et al., 2010
), and AYA cancer guidelines for clinical practice were released in 2012 from The National Comprehensive Cancer Network (NCCN, 2012) that included a focus on physical and psychosocial issues. Specific recommendations have been made regarding addressing unmet service needs for AYAs with cancer to improve psychosocial outcomes (Zebrack et al., 2009
; Kurtz and Abrams, 2010
; D’Agostino et al., 2011
), and the kinds of psychosocial, work/school, and financial support services that would be appropriate to this age group have been identified (Zebrack and Isaacson, 2012
). One important way to promote appropriate supportive care is to ensure that care providers are making necessary referrals (Kahalley et al., 2012
) or to specifically train oncology staff to help navigate or provide relevant care (Turner et al., 2009
The current study’s findings must be considered within the context of its limitations. Although this is the largest population-based study of AYA cancer survivors to date, and the only study to examine associations between support service needs and HRQOL, the design is cross-sectional, relies on self-report of service use, and examines a select set of services. Furthermore, we were not able to examine details about any service programs offered to survivors in the study, and whether unmet services were due to lack of availability, access, or poor communication about available services. Our modest response rate suggests the possibility of a biased sample; however, no major differences were found on demographic and other characteristics between those who did or did not enroll in the study (Harlan et al., 2011
). Additionally, we recognize that the age distribution of the current study (15–39
years at diagnosis) is wide and that the cancer types represented are diverse, such that there may be either developmental or disease-specific differences that we were underpowered to explore in detail. We recognize the importance of exploring issues of independence and developmental stages in future research. In particular, age may not be a precise proxy, as there are many independent or mature adults in their 20s, and there are many individuals in their 30s who are living at home or financially supported by parents – which should be independently examined in future research. However, the intention of the AYA HOPE study was to identify broad areas for future research, and the current study helps provide an indication of potential topics for future study. In particular, our study showed important relationships between specific unmet service needs and physical, emotional, and work/school functioning, highlighting mental health needs, physical or occupational therapy needs, and need for better pain management.
In conclusion, the current study suggests that AYAs with cancer have unmet supportive care service needs and that these needs are associated with decrements in HRQOL. In-depth studies are necessary to tease apart issues regarding availability and access to these service needs, and to determine whether they are being offered routinely or there are subsets of individuals not receiving appropriate care. Future research should examine developmentally appropriate, relevant practices for improving access to services that have been shown to adversely impact HRQOL, particularly mental health, physical/occupational therapy, and pain management services.