Distress screening and management for adolescents and young adults: 2022 NCI community oncology program landscape assessment

PURPOSE: Adolescent and young adult cancer patients (AYAs, aged 15-39) are at an elevated risk of experiencing psychosocial distress. Furthermore, most AYAs receive care in community oncology settings where little is known about distress screening and management for AYAs. We examined distress screening at National Cancer Institute Community Oncology Research Program (NCORP) across 100 practices previously identified as AYA-treating. METHODS: Using data from the 2022 Landscape Assessment survey, distress screening and availability of mental health care were evaluated. Univariable and multivariable analyses examined associations between on-site availability of mental health services and AYA-relevant practice characteristics (e.g., Children's Oncology Group affiliation, number of new AYAs annually, AYA program). RESULTS: Nearly all (91%) AYA-treating practices reported routinely screening for distress, with 47% using the National Comprehensive Cancer Network (NCCN) Distress Thermometer. Additionally, 23% of practices reported they do not have mental health services onsite. Practices treating ≥ 100 new AYAs annually were more than 3 times as likely to have onsite mental health services than practices treating < 100 new AYAs annually in multivariable models (OR = 3.09, 95% CI = 1.04, 9.18; p = 0.042). CONCLUSIONS: Although distress screening was widely conducted in AYA-treating NCORP practices, findings raise concerns about the sensitivity and specificity of measures used and access to onsite cancer-specific psychosocial care. Ultimately, the goal of distress screening is referral for assessment and intervention; referral to off-site services may create access barriers. Future studies should focus on understanding whether those who experience distress can and do access cancer-specific psychosocial care, and barriers to doing so.