Stakeholder Priorities for Cystic Fibrosis Mental Health Research: A Community and Provider Survey

Background: Mental health was identified as a top research priority of the cystic fibrosis (CF) community. The CF Foundation formed a Mental Health Research Priorities Working Group and sought input into specific mental health topics for research prioritization. Methods: A survey of adults with CF, caregivers/family members, CF Foundation staff, and multidisciplinary CF healthcare providers elicited feedback regarding prioritization of a range of mental health research topics. We compared quantitative and qualitative responses based on respondent type and demographic characteristics, and analyzed group means using two-sided T-tests with Bonferroni adjustment for multiple comparisons (p < 0.1). We summarized progress to date in addressing the identified research priorities. Results: Community (n = 693) and provider (n = 352) respondents agreed on the top six research priorities rated as “very important” or “a top priority”: (1) anxiety, including procedural anxiety; (2) depression/mood disorders; (3) effects of mental health on physical health; (4) effects of treatment burden on mental health; (5) understanding risk factors and prevalence of mental health conditions in people with CF (PWCF); (6) effects of CF on the family, including family planning. Providers rated substance misuse and disordered eating/body image “very important/top priority” more often than community members. Community members rated mental health side effects of CF medications, PTSD/medical trauma, grief/bereavement, and survivor's guilt “very important/top priority” more often than providers. Conclusions: The CF Foundation Mental Health Research Prioritization survey yielded a compelling roadmap for CF mental health research. These priorities are shaping initiatives to improve the mental health and well-being of PWCF and their families.