Identifying gaps and needs in care for adolescents and young adults with melanoma

Adolescents and young adults (AYAs, age 15-39 years) with melanoma have needs unique from pediatric or adult populations due to interference with developmental milestones. This study aims to assess the needs of AYA melanoma patients using the Needs Assessment and Service Bridge (NA-SB) questionnaire.

A REDCap survey based on the AYA NA-SB was distributed via email, social media, newsletters, and conferences between August to October 2024. Data were reported for the overall population and analyzed by sex, treatment phase, and exposure to immune checkpoint blockers (ICBs).

One hundred fifty-two patients participated in the survey. Male and female AYAs had different need profiles, with the males expressing greater need in understanding the role of genetics in diagnosis (51.5% vs. 33.9%, p = 0.019) and the sexual side effects of treatment (38.3% vs. 16.6%, p = 0.016) and the females reporting greater needs in understanding their disease status (71.3% vs. 48.5%, p = 0.003). AYAs on active treatment reported greater needs than those who completed treatment in managing work and life during treatment (55.5% vs. 27.1%, p = 0.03), being equipped to cope with diagnosis (42.8% vs. 25%, p = 0.029), and managing the emotional side effects of treatment (62% vs. 29.5%, p = 0.002). AYAs treated with ICBs had greater needs in managing long-term side effects of treatment (70.8% vs. 31.6%, p = 0.0005), pain management (30.6% vs. 11.6%, p = 0.01), and the physical side effects of treatment (36.7% vs. 16.5%, p = 0.021).

AYA melanoma patients express unique needs based on sex, treatment phase, and type of systemic therapy. Assessing patient needs and connecting AYAs to relevant supportive services may help mitigate unique challenges encountered during melanoma treatment and in post-treatment survivorship.