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

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

SUBMITTER: Smith PJ 

PROVIDER: S-EPMC7868110 | biostudies-literature | 2020 Oct

REPOSITORIES: biostudies-literature