CF programs are successfully screening and tracking GAD-7/PHQ-9 scores, supporting feasibility of including these data in patient registries, though further work is needed to increase electronic screening and expand screening for children under 12 and other mental health conditions.
Key Findings
Results
Nearly all CF programs screened adolescents and adults for anxiety and depression using GAD-7/PHQ-9 instruments.
Cross-sectional healthcare provider survey with N=100 respondents conducted March-April 2023
Participants were from US CF programs
95% of programs systematically tracked MH data, using formats such as databases, spreadsheets, or electronic medical records
Screening was described as occurring for adolescents and adults
Results
Respondents with more than 5 years of CF experience were more likely to track total and item-level GAD-7/PHQ-9 scores.
No differences in tracking practices were found by geographic region or program size
Experience level (>5 years) was the distinguishing factor in likelihood of tracking both total and item-level scores
This finding came from the cross-sectional survey of N=100 healthcare providers
Results
The majority of CF programs screened for mental health using paper-based methods.
Over 80% of programs screened using paper
This finding suggests limited adoption of electronic screening modalities
The paper characterizes increasing electronic screening as an area needing further work
Results
Only half of CF programs screened for mental health side effects of CFTR modulators, and very few screened for mental health conditions beyond anxiety and depression.
50% of programs screened for MH side effects of modulators
Only 16% of programs screened for MH conditions beyond anxiety and depression
This indicates substantial gaps in the breadth of mental health screening at CF programs
Results
Few pediatric CF programs screened children under 12 years of age for mental health conditions.
Only 27% of pediatric programs screened children under 12 years
The paper identifies recommending screening measures for children under 12 as an area needing further work
This gap was identified through the cross-sectional survey of N=100 healthcare providers
Results
Focus group participants endorsed adding new mental health variables to the CF Foundation Patient Registry (CFFPR) and identified barriers, facilitators, and resource needs for doing so.
A purposive sample of N=11 survey respondents participated in a focus group and post-survey conducted in September 2024
Participants were sampled from the original N=100 cross-sectional survey respondents
Focus group participants identified specific barriers and facilitators related to expanding MH data collection in the CFFPR
The focus group findings supported the overall feasibility conclusion of the study
Background
Mental health data in the CF Foundation Patient Registry is currently limited despite mental health being a top research priority in CF.
Patient registries are described as central to improving CF treatment and outcomes
The study was designed to inform the feasibility of including additional MH variables in CF registries such as the CFFPR
The current CFFPR MH data limitations motivated the study's aims
Georgiopoulos A, Quittner A, Schechter M, He J, Chaudhary N, Merowitz R, et al.. (2026). Feasibility of tracking mental health in cystic fibrosis registries: lessons from current practice.. Respiratory medicine. https://doi.org/10.1016/j.rmed.2026.108703