Measuring health-related quality of life in adolescent and young adult cancer survivors with the National Institutes of Health Patient-Reported Outcomes Measurement Information System® : Comparing adolescent, emerging adult, and young adult survivor perspectives.

Abstract

Our knowledge of symptom burden and functioning among adolescent and young adult (AYA; diagnosed ages 15-39) cancer survivors has been hindered by variability in health-related quality of life (HRQOL) measurement associated with developmental and disease heterogeneity among AYAs. We aimed to examine the variability in domain-specific aspects of HRQOL as a function of cancer type and developmental stage to clarify commonalities and differences using the NIH Patient-Reported Outcome Measurement Information System® . Five hundred seventy-two AYAs were recruited by an online research panel using stratified sampling (treatment status: on vs. off; developmental stage: adolescents, emerging adults, young adults). Participants completed questionnaires that included sociodemographic characteristics, clinical history, and the adult version of the Patient-Reported Outcomes Measurement Information System® -29 (PROMIS-29). Generalized linear models were run for each HRQOL domain and included treatment status, developmental stage, and cancer type (hematologic vs. solid tumor) and their interactions as independent variables. There were no significant differences in any HRQOL domain by cancer type, and few significant differences were observed in PROMIS domains between developmental groups among on-treatment AYA survivors. In contrast, off-treatment emerging adults and young adults reported significantly higher symptoms and worse functioning compared to adolescents (all ps ≤ 0.003). AYAs diagnosed in different developmental stages, particularly among off-treatment survivors, experienced diverse constellations of symptoms and functioning, and developmental stage was a more critical predictor of HRQOL than cancer type. These results suggest that supportive care interventions developed for AYA cancer survivors must be tailored and flexible by developmental stage and treatment status.