Incorporating patient and caregiver feedback into lung transplant referral guidelines for individuals with cystic fibrosis—Preliminary findings from a novel paradigm

Patrick J. Smith, Jordan M. Dunitz, Amy Lucy, Sarah E. Hempstead, Erin Tallarico, Albert Faro, Joseph M. Pilewski, Kathleen J. Ramos

Research output: Contribution to journalArticlepeer-review

Abstract

Background: Lung transplantation is a common therapeutic option for individuals with cystic fibrosis (CF) and advanced lung disease, yet many individuals with CF are not appropriately referred for evaluation. The present study sought to enhance CF transplant referral guidelines by integrating patient-centered input to identify possible psychosocial barriers contributing to suboptimal referral for appropriate CF transplant candidates. Methods: As a component of developing the Cystic Fibrosis Foundation (CFF) Lung Transplant Referral Consensus Guidelines, we convened a focus group of lung transplant recipients with CF and two spouses of CF recipients. Each session involved standardized approaches to elicit qualitative, thematic content. Results: CF patients and caregivers characterized five areas for improvement, which were integrated into formal CFF referral guidelines. These included (a) timing of transplant discussion with CF providers, (b) accuracy of transplant-related knowledge and expectations, (c) stigma associated with the need for transplantation, (d) treatment team transition issues, and (e) social support and mental health concerns. Earlier introduction of transplant, greater details regarding manageable aspects of treatment, and greater provision of social support were all associated with better psychosocial experiences. Conclusions: Integrating patient-centered input into guideline development yielded important and previously unknown psychosocial barriers contributing to suboptimal transplant referral.

Original languageEnglish (US)
Article numbere14038
JournalClinical Transplantation
Volume34
Issue number10
DOIs
StatePublished - Oct 1 2020

Bibliographical note

Funding Information:
This study was funded by grants from the Cystic Fibrosis Foundation (CFF) and the National Institutes of Health (NIH). The authors would like to thank the CFF and Kelsey Fredkin for facilitating patient and caregiver access through Community Voice and their support of this work. Additionally, we would like to thank all of the individuals with cystic fibrosis and family members across the United States who participated for sharing their insights. We would also like to thank other members of the CF Lung Transplant Referral Guidelines Committee for their input, including Daniel B. Rosenbluth, Melinda Solomon, and Alice L. Gray.

Funding Information:
This study was supported by the CFF and the National Institutes of Health. The authors have no relevant conflicts of interest to the present manuscript.

Keywords

  • cystic fibrosis
  • guideline development
  • locus of control
  • lung transplantation referral
  • psychosocial
  • self-efficacy
  • social support
  • stigma
  • transplant

PubMed: MeSH publication types

  • Journal Article

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