A significant number of cystic fibrosis (CF) patients do not receive timely lung transplant evaluations because of their preference and their doctors’ possibly too-narrow focus, according to the results of a survey.
The study explaining the results, “Cystic fibrosis physicians’ perspectives on the timing of referral for lung transplant evaluation: a survey of physicians in the United States,” was published in the journal BMC Pulmonary Medicine.
A 15-question, anonymous survey was sent to 332 medical directors at Cystic Fibrosis Foundation-accredited centers. The response rate was 34%, with 114 physicians completing the questionnaire.
Most physicians (107, or 94%) said they would refer a patient for evaluation if they showed a rapid decline in forced expiratory volume (FEV1 , a test of lung function), or their lung function fell to less than 30% of predicted. Respondents focused less on factors beyond lung function, such pulmonary hypertension.
The condition — in which arteries that carry blood from the heart to the lungs become narrowed — is an internationally recommended indication to list a patient for a transplant, the researchers wrote.
“This focus on lung function may be related to a lack of data about other parameters (screening for pulmonary hypertension is not within the CFF guidelines; 6-min walk tests are not routinely recommended), but focusing only on lung function could lead to missed opportunities for referral,” the team wrote.
Bacterial infections, co-morbidities (other diseases occurring at the same time), and “patient preference not to undergo lung transplantation” were listed as reasons physicians would not make a referral.
“This raises the question of whether patients understand the risks and benefits of LTx [lung transplant] prior to referral and the consequences of their decision to defer referral,” the authors wrote.
Eighty-eight percent of the respondents (100) said lung transplants improve patients’ survival, and 90% (103) said they benefit quality of life.
“The decision to pursue lung transplantation is a complex balance of patient preference and physician judgment of medical indication and patient candidacy,” the authors wrote. “Interventions to educate CF physicians (both adult and pediatric patient providers) about the non-lung function-based factors that impact listing for LTx should be studied and implemented. Further exploration of physician-level and CF patient-level barriers to timely LTx referral is warranted.”