Assessing Practices, Beliefs, and Attitudes about Palliative Care among People with Cystic Fibrosis, Their Caregivers, and Clinicians: Results of a Content Analysis

Abstract

Background: Individuals with cystic fibrosis (CF) experience symptoms affecting quality of life and may benefit from palliative care (PC). Objectives: To present results of content analysis from open-ended survey questions assessing knowledge and experiences with PC among CF stakeholders. Design, Setting, Subjects: Online surveys were sent to CF stakeholders through CF-specific listservs predominantly in the United States. Measurements: Responses to five open-ended questions about CF PC-delivery, health care provider training, and lung transplant-underwent content analysis. Responses were coded using NVivo12 Software™. Results: Forty-eight CF adults, 59 caregivers, and 229 providers responded to the open-ended survey questions. Analysis showed 5 primary categories related to CF PC: (1) stakeholder perceptions of PC for CF, (2) delivering PC to people with CF, (3) conversations about PC for CF, (4) perceptions that PC services are underutilized for people with CF, and (5) beliefs that PC services are critical for people with CF considering or pursuing lung transplant. Analysis showed variation among and within groups in defining PC for CF, when, and how to deliver it. Many respondents felt PC was underutilized in CF. Most saw PC as particularly important when considering lung transplant, managing anxiety around transplant, and for goals of care discussions. Some believed PC and lung transplant were mutually exclusive. Conclusion: Respondents felt PC is underutilized for CF, and that people with CF may miss out on the benefits of PC. Among stakeholders, respondents felt people with CF would benefit from access to primary and secondary PC services.

Keywords: cystic fibrosis; primary palliative care; qualitative methods.

Conflict of interest statement

M.B.: Receives research support from the Cystic Fibrosis Foundation (20K0 2020) outside the submitted work, and a grant from a federal source (Agency for Healthcare Research and Quality [AHRQ] 1R03HS026970-01A1), outside the submitted work.

L.J., M.R.H., J.L.G., E.C., S.E.H., and A.F.: Nothing to disclose.

E.P.D.: receives research support from the Cystic Fibrosis Foundation.

A.M.G.: reports grants and personal fees from Vertex Pharmaceuticals, outside the submitted work; grants, personal fees, and nonfinancial support from the Cystic Fibrosis Foundation, outside the submitted work, grant funding from the Dutch Cystic Fibrosis Foundation, outside the submitted work; personal fees and nonfinancial support from Cystic Fibrosis Australia, outside the submitted work; nonfinancial support from the European Cystic Fibrosis Society, outside the submitted work; personal fees from Johns Hopkins University/DKBmed, outside the submitted work.

C.H.G.: reports grants, personal fees and nonfinancial support from the Cystic Fibrosis Foundation, grants from the Federal sources (UM1HL119073, UL1TR000423, P30 DK 089507, R01FD003704 and R01FD006848), personal fees and honoraria from Vertex Pharmaceuticals (Participation in UK LEAD conference), clinical trial contract and personal fees from Boehringer Ingelheim while serving as the National PI for a phase 2 study, honoraria from Gilead Sciences for serving as a Chair of a grant review committee, and honoraria from Novartis for serving as a DSMB Chair for a joint Novartis/European Commission trial.

D.K.: received research funding during the conduct of this study from the NIH/National Heart Lung and Blood Institute (K01HL133466), and the Cystic Fibrosis Foundation (KAVAL19QI0).