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

Community and provider respondents agreed on six top mental health research priorities rated as 'very important' or 'a top priority.'

• Community respondents: n = 693; provider respondents: n = 352.
• The six shared top priorities were: (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; (6) effects of CF on the family, including family planning.
• Respondents included adults with CF, caregivers/family members, CF Foundation staff, and multidisciplinary CF healthcare providers.

Providers rated substance misuse and disordered eating/body image as 'very important/top priority' more often than community members.

• This difference was identified through two-sided T-tests with Bonferroni adjustment for multiple comparisons (p < 0.1).
• Provider respondents totaled 352 and represented multidisciplinary CF healthcare providers.
• Community respondents totaled 693 and included adults with CF, caregivers/family members, and CF Foundation staff.

Community members rated mental health side effects of CF medications, PTSD/medical trauma, grief/bereavement, and survivor's guilt as 'very important/top priority' more often than providers.

• This difference was identified using two-sided T-tests with Bonferroni adjustment for multiple comparisons (p < 0.1).
• Community respondents included adults with CF, caregivers/family members, and CF Foundation staff (n = 693).
• These topics — PTSD/medical trauma, grief/bereavement, and survivor's guilt — may reflect lived experience perspectives not as prominently recognized by clinical providers.

The CF Foundation Mental Health Research Prioritization survey was designed to elicit feedback from a broad range of stakeholders on specific mental health research topics.

• The survey was developed by the CF Foundation Mental Health Research Priorities Working Group.
• Respondent groups included adults with CF, caregivers/family members, CF Foundation staff, and multidisciplinary CF healthcare providers.
• Both quantitative and qualitative responses were collected and compared based on respondent type and demographic characteristics.
• Group means were analyzed using two-sided T-tests with Bonferroni adjustment for multiple comparisons (p < 0.1).

Mental health was identified as a top research priority of the cystic fibrosis community prior to this survey, motivating the formation of a dedicated working group.

• The CF Foundation formed a Mental Health Research Priorities Working Group in response to this identified priority.
• The working group sought specific community and provider input to guide research prioritization.
• The resulting priorities are described as 'shaping initiatives to improve the mental health and well-being of PWCF and their families.'