A systematic review of health-related quality of life outcomes in psychosocial intervention trials for adolescent and young adult cancer survivors

Background: The National Cancer Institute has catalyzed research in adolescent and young adult (AYA) oncology by identifying the need for supportive care intervention studies and psychometrically robust health-related quality of life (HRQOL) measures. We evaluated progress toward these goals (1) examining changes in the number of registered psychosocial intervention trials being conducted with AYAs over time; (2) determining what domains of HRQOL were assessed across these intervention trials; and (3) identifying the most frequently used measures of HRQOL. Methods: We conducted a systematic review of psychosocial intervention trials for AYAs registered on ClinicalTrials.gov from 2007 to 2021. Following identification of relevant trials, we extracted the outcome measures and determined whether they were measures of HRQOL and which HRQOL domains were evaluated. Descriptive statistics were used to summarize trial and outcome characteristics. Results: We identified 93 studies that met our inclusion criteria and 326 HRQOL outcomes across studies. The average number of clinical trials conducted annually has increased from 2 (SD = 1) during the years of 2007–2014 to 11 (SD = 4) during the years of 2015–2021. 19 trials (20.4%) did not include a measure of HRQOL. HRQOL measures varied widely, and most evaluated psychological and physical domains. Of the 9 measures used 5 + times, none were developed to cover the full AYA age spectrum. Conclusions: This review demonstrated that the number of AYA psychosocial intervention trials conducted annually has increased. However, it also revealed several important areas for additional work including: (1) ensuring psychosocial trials include HRQOL measures; (2) increasing the frequency of evaluation of underrepresented domains of HRQOL (e.g., body image, fertility/sexuality and spiritual); and (3) improving the validity and standardization of measures used to evaluate domains of HRQOL across AYA-focused trials to improve the field's ability to compare the impact of different psychosocial interventions on HRQOL outcomes.