ABSTRACT 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.
Georgiopoulos et al. (Thu,) studied this question.
Synapse has enriched 5 closely related papers on similar clinical questions. Consider them for comparative context: