Addressing lung transplant with adults with cystic fibrosis: A qualitative analysis of patients' perspectives and experiences

Abstract

Referral for lung transplantation is a complex process that typically begins with a discussion in cystic fibrosis (CF) clinic. We performed a secondary analysis of interviews conducted at the University of Washington CF Clinic as part of a study of unmet palliative care needs, June 2015 -January 2016, among adults with moderate-to-severe CF-related lung disease. Content analysis methods were used to identify themes related to discussion of lung transplant in CF clinic. Thirty-two of 48 interviews (67%) addressed transplant. An individual's willingness to discuss transplant was not necessarily related to the degree of lung function impairment. Patients reported reliance on CF physicians as a source of accurate information about transplant. Individuals with CF sometimes reported feeling too old or not worthy of transplant. Many had apprehensive or ambivalent feelings towards transplant. Patient-identified barriers and facilitators to lung transplant discussions can inform physicians as they discuss transplant in CF clinic.

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

“…For example, emphasizing that many, if not most, of the untoward effects of transplantation are manageable will likely reduce the risk of learned helplessness and associated depressive symptoms. CF providers should be aware that clinical interactions introducing uncertainty about patients’ eligibility for transplantation may serve to increase ambivalence 23 and ultimately avoidance of transplant‐related knowledge or health decisions 35,36 . Development of an updated decision aid or other transplant educational materials that could be widely distributed across CF centers could also serve to reduce decisional conflict surrounding lung transplantation 37 …”

Focusing on the penultimate step: increasing early lung transplant discussion in cystic fibrosis clinic to prepare patients for referral

“…Previous studies have identified significant CF provider-level 4 5 and patient-level 6 barriers to transplant referral for individuals with CF. This QI effort focused on the penultimate step of transplant discussion between CF providers and patients, specifically promoting patient education to medically and psychologically prepare patients for potential referral.…”

“…The setting for the QI initiative was the paediatric CF Centre at Massachusetts General Hospital. Strategies included: (1) Assembly of a multidisciplinary QI team including nursing, social work, CF providers and a transplant physician, (2) Analysis of the baseline frequency of transplant discussion between CF providers and patients with low lung function (eg, forced expiratory volume in 1 s (FEV 1 ) ≤50%-predicted), (3) Process mapping steps to lung transplant discussion during clinic visits, (4) Survey of CF providers (n=3) to identify specific barriers to discussion in patients with low lung function, (5) Survey of patients with CF (n=6) regarding optimal timing for initial discussion, (6) Brainstorming of potential interventions using a priority pay-off matrix, (7) Creation of a web-based intervention and patient education material, and (8) Postintervention data collection and analysis using standard statistics and QI methodology.…”

Lung transplant referral practice patterns: a survey of cystic fibrosis physicians and general pulmonologists

“…Pretransplant non-adherence increases risk for nonadherence and mortality post-surgically [13], however perfect adherence to a complex CF treatment regimen consumes nearly 2 h each day [14], making adherence challenging for individuals with CF. Studies on CF patient-level barriers to LTx are limited but past nonadherence has been linked to feelings of inferior worthiness for transplant by patients [15]. Suitably, adherence behaviors are identified as a modifiable barrier to transplant in the updated CFF guidelines [4], reiterating the importance of early referral to identify and rectify this concern with reinforcement from the LTx team.…”