Approximately 72,000 adolescents and young adults (AYA), defined by the National Comprehensive Cancer Network (2017) as ages 15-39, are diagnosed with cancer each year. A cancer diagnosis during this life stage generates unique medical and psychosocial needs as developmental milestones are simultaneously impacted (Institute of Medicine, 2013).
 

Social isolation and alienation are commonly reported among AYA patients and survivors (Zebrack, Hamilton, & Wilder-Smith, 2009). D’Agostino, Penney and Zebrack (2011) note that financial challenges associated with debts incurred during therapy and/or trouble retaining or obtaining employment, health benefits and life insurance are common among AYAs. They also point out that AYAs place a great deal of importance on having adequate information on the possible impact of cancer and treatment on fertility.

The Ulman Cancer Fund for Young Adults employs patient navigators at cancer centers in the Washington, DC, and Baltimore areas to help AYAs cope with their diagnoses, treatments and emotions, and navigate medical systems, relationships, difficult decisions and survivorship challenges.

Between January 1, 2017, and June 30, 2018, data was collected by clinical social work patient navigators (CSWPNs) from the Sidney Kimmel Comprehensive Cancer Center (SKCCC) at Johns Hopkins Hospital and the Murtha Cancer Center (MCC) at Walter Reed National Military Medical Center between January 1, 2017, and June 30, 2018. A total of 287 unique patients were included in the data collection, which tracked patients via monthly Google Form submissions by the CSWPNs. The study tracked the variation and frequency of citation of barriers to care and well-being, as well as the intervention strategies used to address them.

The average patient age at SKCCC was 19, and the five most common diagnoses were acute lymphocytic leukemia, Hodgkin’s lymphoma, osteosarcoma, brain cancer and acute myeloid leukemia. At MCC, the average patient age was 31, and the most common cancers were breast, brain, non-Hodgkin’s lymphoma, testicular and colorectal. The average 19-year-old is likely to have recently begun college or started in a training program or career. They may have to move back home with parents during treatment and rely on them for transportation, help with meals and medications, emotional support, as well as financial support, particularly in the civilian setting. The average 31-year-old is more likely to have been working for some time, may or may not be married with children and, in the military setting, may have no out of pocket costs for medical care.

The data collection reflected that despite the apparent differences between the AYA patient populations at SKCCC and MCC, the CSWPNs observed many of the same barriers and employed even more of the same interventions. Specifically, seven of the 10 most commonly encountered barriers at the two cancer centers were the same. In order of highest incidence, they were: adjustment to illness and/or hospitalization, social isolation, understanding diagnosis and/or treatment, limited support, mental health, work and/or school, and communication with the medical team. Of note, though, the SKCCC patient navigator frequently observed barriers such as general financial need, disability assistance and lodging, while the MCC navigator observed that side effects and late effects of treatment, military orders and status, and fertility were frequently faced challenges.

More striking is the fact that the most commonly used intervention by the CSWPNs at both cancer centers, having been cited more than twice as frequently as the next on each list, was one-on-one emotional support. The remainder of the shared top interventions employed by the CSWPNs, in order of frequency, were encouragement, Ulman program referrals, referrals to other staff or hospital resource, resources related to coping with diagnosis, treatment and side effects, logistical support and fertility preservation education. The CSWPNs differed on three of the top 10 interventions—at SKCC the top three were facilitating communication and coordination among the medical team, referrals and assistance with financial support and lodging. At MCC,the top three were routine check-in, connections to another patient or survivor, and invitation or referral to a social or educational activity completed were the top 10 interventions.

In addition to their unique medical needs, AYAs have informational and psychosocial needs that most programs do not address (Institute of Medicine, 2013). These include information about diagnosis, age-specific support groups, fertility preservation; and financial, practical and peer support. The data collected by the CSWPNs at SKCCC and MCC indicate that AYA patients at these cancer centers are, in fact, receiving informational and psychosocial support that is tailored to their ages. The differences in demographics at the two centers may help to explain the slight variation in the frequency with which certain barriers and interventions were cited. Despite differences in average age and diagnoses, this study showed that AYAs, first and foremost, require frequent emotional support and encouragement. This is profound, in that social workers with minimal specific AYA experience may already be equipped to provide the most commonly used intervention to address barriers to care and well-being.

Consider joining the AYA SIG to learn more about providing age-specific support, resources and care to AYAs at your institution. Participation in this SIG may broaden your knowledge of the unique psychosocial issues of adolescents and young adults with cancer. For more information about the AYA SIG, visit the AYA SIG page on the AOSW website and feel free to contact me.

References

D’Agostino, N.M., Penney, A., & Zebrack, Z. (2011). Providing developmentally appropriate psychosocial care to adolescent and young adult cancer survivors. Cancer, 117(10), 2329-2334.

Institute of Medicine. (2013). Workshop summary. In Identifying and addressing the needs of adolescents and young adults with cancer (Introduction). Retrieved from http://www.nap.edu/read/18547/chapter/2#introx-ch1.

National Comprehensive Cancer Network. (2017). But I’m too young to have cancer! In Guidelines for Patients—Adolescent and Young Adults with Cancer (1). Retrieved from https://www.nccn.org/patients/guidelines/aya/files/assets/basic-html/page-10.html

Zebrack, B., Hamilton, R., & Wilder-Smith, A. (2009). Psychosocial outcomes and service use among young adults with cancer. Seminars in Oncology, 36(5), 468-477.