Background: Medication nonadherence is demonstrated by up to 60% of adolescents and young adults (AYAs) with leukemia and lymphoma and is associated with poor health outcomes. In other populations, higher social support is associated with higher adherence, suggesting that facilitating social support may reduce barriers to adherence. The role of social support in facilitating adherence, however, may differ by patient demographic variables (i.e., age, sex) and living/caregiving arrangements, which undergo significant shifts during adolescence and young adulthood as AYAs transition to independence and assume responsibility over their care. An important first step in understanding how to engage care partners to support adherence among AYAs with leukemia and lymphoma is to examine the relationship between demographic variables and social support and explore the relationship between social support and adherence barriers.

Procedures: A secondary analysis was conducted utilizing data froma multisite longitudinal observational study of medication adherence including 65 AYAs (ages 15-24 years) with cancer. This analysis included baseline demographic (age, sex, primary caregiver, number of parents in household), social support (Medical Outcomes Study Social Support [MOS-SS] Survey), and adherence barrier (Adolescent Medication Barriers Scale [AMBS]) data from the subset of AYAs with leukemia or lymphoma. Descriptive statistics were used to summarize MOS-SS Survey Total Social Support and Emotional/Informational and Tangible Support scores. To examine whether social support varied by demographic variables, non-parametric tests (Mann-Whitney U test, Kruskal-Wallis H test) were used for categorical variables and Spearman's rank-order correlation was used for continuous variables. Spearman's rank-order correlations were used to evaluate the association between social support and adherence barriers overall and by demographic variables associated with social support.

Results: Fifty-one AYAs (ages 15-24 years; M age = 18.76 years, SD = 2.51; 63% male) were included. Mean time since diagnosis of leukemia (n = 34, 67%) or lymphoma (n = 17, 33%) was 1.19 years (SD = 1.50). The majority of AYAs identified as White (75%) and most identified as non-Hispanic (86%). There was an even distribution of AYAs who reported living with both of their parents versus others (49% vs. 51%) and the majority of AYAs identified a biological parent as a primary caregiver (61% mothers, 18% fathers). AYAs reported on average 4.08 barriers to medication adherence (range 0-11, SD = 2.99) and 86% of AYAs endorsed at least 1 barrier. Total Social Support, Emotional/Informational Support, and Tangible Support scores did not differ by age (p = 0.470 - 0.920), whether AYAs reported living with both parents (vs. 1 or 0, p = 0.066 - 0.082), or type of primary caregiver (biological mother vs. biological father vs. other caregiver, p = 0.085 - 0.235). Social support did differ by sex. Compared to females, males reported significantly lower Total Social Support (76.07 vs. 87.53; p =.010), Emotional/Informational Support (71.68 vs. 83.06; p = .036), and Tangible Support (80.67 vs. 90.46; p = .049). Across all AYAs, the relationship between adherence barriers and Total Social Support (p = .40), Emotional/Informational Support (p = 0.69), and Tangible Support (p = 0.052) were not significant. However, an exploratory analysis by sex revealed that among females, higher levels of social support were associated with fewer barriers to adherence (Total Social Support: p = 0.004; Emotional/Informational Support: p = 0.017; Tangible Support: p = 0.013).

Conclusions: While AYAs endorse high levels of social support, males report receiving less overall support, including instrumental assistance and access to someone who provides guidance and a sense of being cared for. This may be secondary to the influence of gender norms on help-seeking behavior and communicating distress, which may differentially impact elicited support from others. Higher levels of social support were associated with fewer adherence barriers among females only, despite nearly all AYAs reporting adherence barriers, which may reflect societal influences on how individuals engage support networks in their care to support adherence. Additional research is needed to explore these sex differences in social support and adherence to improve our understanding of how to support medication-taking among all patients.

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2025
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