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. 2020 Mar 4;20(1):58.
doi: 10.1186/s12890-020-1067-4.

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

Bethany L Bartley  1 , Carolyn E Schwartz  1   2 , Roland B Stark  2 , Anna M Georgiopoulos  3 , Deborah Friedman  3 , Christopher J Richards  4 , Henry L Dorkin  5 , T Bernard Kinane  1 , Isabel P Neuringer  4 , Lael M Yonker  6
Affiliations

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

Bethany L Bartley et al. BMC Pulm Med. .

Abstract

Background: Many individuals with cystic fibrosis (CF) die from respiratory failure without referral for lung transplant. Physician practices that may expedite, delay, or preclude referral, are poorly understood.

Methods: Two parallel, web-based surveys focusing on lung transplant referral triggers and barriers, as well as pre-referral evaluation, were emailed to pulmonologists practicing in the New England region. One questionnaire was sent to CF providers (n = 61), and the second to general pulmonary providers practicing at the same institutions (n = 61).

Results: There were 43 (70%) responses to the CF provider survey, and 25 (41%) responses to the general pulmonary ('non-CF') provider survey. Primary reasons for CF providers to refer their patients included: rapidly declining lung function (91%) and a forced expiratory volume in 1 s (FEV1) below 30% predicted (74%). The greatest barriers to referral for both CF and non-CF providers included active tobacco use (65 and 96%, respectively, would not refer), and active alcohol or other substance use or dependence (63 and 80%). Furthermore, up to 42% of CF providers would potentially delay their referral if triple-combination therapy or other promising new, disease-specific therapy were anticipated. In general, non-CF providers perform a more robust pre-referral medical work-up, while CF providers complete a psychosocial evaluation in higher numbers. Across both groups, communication with lung transplant programs was reported to be inadequate.

Conclusions: Physician-level barriers to timely lung transplant referral exist and need to be addressed. Enhanced communication between lung transplant programs and pulmonary providers may reduce these barriers.

Keywords: Cystic fibrosis; Lung transplantation; Physician survey; Referral.

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Conflict of interest statement

The authors declare that they have no competing interests.

Figures

Fig. 1
Fig. 1
Absolute Contraindications: substance use history (a), psychosocial and medical comorbidities (b), and CF-specific comorbidities (c) that would preclude cystic fibrosis (CF) or non-CF pulmonary providers’ referral for lung transplant evaluation
Fig. 2
Fig. 2
Referral Influencers: the potential impact of (a) current CFTR-modulator therapy, and (b) anticipated therapy with a highly effective CFTR modulator (i.e. triple-combination CFTR modulator or other promising new therapy) on the timing of CF providers’ referral for lung transplant evaluation, and the potential impact of (c) an anticipated promising new therapy targeting underlying disease process on the referral timing of non-CF pulmonary providers. Panels show the proportion of responding providers who would not change or potentially delay the timing of their referral based on these factors
Fig. 3
Fig. 3
Medical and psychosocial evaluation routinely performed by pulmonary providers prior to lung transplant referral. Responses are grouped by cystic fibrosis (CF) and non-CF pulmonary providers
Fig. 4
Fig. 4
Types of communication typically occurring between lung transplant centers and referring pulmonary providers and types of communication identified as preferred among referring pulmonary providers. Responses are grouped by cystic fibrosis (CF) and non-CF pulmonary providers
See this image and copyright information in PMC

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