(315) CF mental health research priorities: Qualitative content analysis of CF community and provider survey

Background: Mental health (MH) is among the top 3 research priorities of the CF community.[1] In 2020-21, the CF Foundation MH Research Prioritization Working Group met to designate areas of focus for CF MH research.[2] To elicit broad input to inform this work, a mixed-methods study was conducted. In June 2020, a 22-item survey was sent via email and social media to CF healthcare providers, people with CF, family caregivers, and other CF community members. We aimed to analyze qualitative content to add depth to quantitative findings.

Methods: 352 providers and 693 community members completed the survey, which included 3 open-ended questions: Q1) When thinking about research topics specific to MH, where are the current gaps in knowledge that should be prioritized for future research? Q2) Is there anything else regarding MH and the needs of the community you would like to share? Q3) Considering the impacts of the COVID-19 pandemic, are there additional MH topics that are not covered by the survey questions? Reponses containing >1 main idea were subdivided into topic-specific codable items. For Q1/Q2, a codebook guided hierarchical placement of each item into an overarching top-line category with corresponding general code, and if applicable, ≥1 specific code and population/setting. A simplified process designated only 1 major theme per item for Q3. Three teams of 1 CF researcher and 2 CF community members coded the 1^st 20% of their assigned items by consensus, then worked in pairs to independently double code the remaining 80%. Two-sided T-tests were adjusted with the Bonferroni correction using a significance level of < .1.

Results: A total of 1391 provider items and 1638 community items were coded for Q1/Q2; 565 provider and 323 community items were coded for Q3. Strong inter-rater agreement was obtained across coding dyads (71%-90%). For Q1/Q2, the most common top-line priorities were 1) MH conditions; 2) living with CF; 3) screening/assessment/intervention; 4) systems-level barriers and facilitators; and 5) effects of modulators (Figure 1). Strong agreement was found in the ranking of top priorities by community members and providers. However, providers were significantly more likely to mention effects of modulators, screening/assessment/intervention and substance misuse, with community members significantly more likely to mention stress and trauma. Respondents also noted concerns captured by a wide range of specific codes (ex: access to MH care, role/life changes, family relationships), populations (ex: children), and settings (ex: inpatient). For Q3, isolation and anxiety emerged as the top COVID-19 concerns, with isolation more salient for community members and anxiety for providers.

Conclusions: Qualitative analysis of a large survey of multiple stakeholders provided input on the top research priorities for CF MH. This information facilitated consideration of diverse perspectives to identify gaps and select areas of focus for future research.

Acknowledgements: This work was supported by the CF Foundation [QUITTNER21X0-SC]. Some data generated through CF Foundation Community Voice.

References: [1] Hollin IL, Donaldson SH, Roman C, Aliaj E, Riva D, Boyle M, Borowitz D. Beyond the expected: Identifying broad research priorities of researchers and the cystic fibrosis community. J Cyst Fibros. 2019 May;18(3):375-377.

[2] Mental Health Research Prioritization Working Group. CF Foundation areas of focus for mental health. https://www.cff.org/key-research-priorities-applicants, 3/19/22.