Development of a Cystic Fibrosis Primary Palliative Care Intervention: Qualitative Analysis of Patient and Family Caregiver Preferences.

To prevent or mitigate chronic illness burden, people with cystic fibrosis (pwCF) and their family caregivers need primary (generalist-level) palliative care from the time of diagnosis forward. We used qualitative methods to explore their preferences about a screening-and-triage model ("

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© The Author(s) 2023.

Déclaration de conflit d'intérêts

The author(s) declared the following potential conflicts of interest with respect to the research, authorship, and/or publication of this article: MJB receives research support from the Cystic Fibrosis Foundation in addition to the submitted work, and a grant from a federal source (AHRQ 1R03HS026970-01A1), outside the submitted work. LD receives research support from the Cystic Fibrosis Foundation [GEORGI19QI0]. RP receives research support from NIH grants. JW reports grants from the Cystic Fibrosis Foundation (CFF); consultation fees from the Data Safety Monitoring Board of CFF, irrelevant to the submitted work. PW reports grants support from Cystic Fibrosis Foundation (CFF); consultation fees from Cystic Fibrosis Foundation (CFF); grant support from Vertex Pharmaceuticals, irrelevant to the submitted work. BMO reports grants from Cystic Fibrosis Foundation; consulting and travel reimbursement from CFF. RWL reports grants from the Cystic Fibrosis Foundation and Vertex Pharmaceuticals; consulting fees and serving on advisory boards for Vertex Pharmaceuticals, outside of the submitted work. DF reports grants from the Cystic Fibrosis Foundation (CFF), Dutch Cystic Fibrosis Foundation, and Vertex Pharmaceuticals, and travel reimbursement from the CFF. MB receives research support from the Cystic Fibrosis Foundation [GEORGI19QI0]. DH reports grants from the Cystic Fibrosis Foundation (CFF), NIH; consulting fees from ADAM Medical review; personnel fees from global CF conference, Metropolitan Jewish Health System and Astra Zeneca advisory board. AMG reports personal fees and travel reimbursement from Cystic Fibrosis Australia; grants, personal fees, and travel reimbursement from Cystic Fibrosis Foundation; grants from the Dutch Cystic Fibrosis Foundation; travel reimbursement from the European Cystic Fibrosis Society; personal fees from Johns Hopkins University/DKBmed; personal fees from Saudi Pediatric Pulmonology Association; grants and personal fees from Vertex Pharmaceuticals. The authors (SD, JP, CK, RA, LY, MM, MS, FF, SP, MH, NC) do not have any personal, professional, or financial conflicts of interest to disclose for this work. The authors did not work with or were otherwise influenced by any external sponsors for this work.