Feasibility of tracking mental health in cystic fibrosis registries: lessons from current practice

Background: Patient registries are central to improving cystic fibrosis (CF) treatment and outcomes. Although mental health (MH) is a top research priority, MH data in the CF Foundation Patient Registry (CFFPR) is limited. We aimed to inform the feasibility of including additional MH variables in CF registries such as the CFFPR. Methods: We conducted a cross-sectional healthcare provider survey (N = 100; March-April 2023) regarding current practices in MH screening and data tracking at US CF programs. We then purposively sampled survey respondents to participate in a focus group and post-survey (N = 11; September 2024). Results: Nearly all programs screened adolescents and adults for anxiety/depression with GAD-7/PHQ-9 and 95% systematically tracked MH data (e.g., in database, spreadsheet, electronic medical records). Respondents with >5 years of CF experience were more likely to track total and item-level GAD-7/PHQ-9 scores; there were no differences by region or program size. Over 80% screened using paper. Half screened for MH side effects of modulators; 16% screened for MH conditions beyond anxiety/depression. Few (27%) pediatric programs screened children <12 years. Focus group participants endorsed adding new variables to the CFFPR, identifying barriers, facilitators and resource needs. Conclusions: CF programs are successfully screening and tracking GAD-7/PHQ-9 scores, supporting feasibility of including these data in patient registries. Further work to increase electronic screening and to recommend screening measures for children <12 and for other MH conditions is needed. Expanding the scope of mental health data collection will enable CF registries to support longitudinal CF mental health research that addresses identified priorities.