CF Specialists Need More Education on Current Lung Transplant Referral Guidelines, Study Finds

When it comes to lung transplants, a study has found that the practice of many cystic fibrosis (CF) specialists differs from that of updated recommendations, highlighting a need to educate providers on new guidelines.

The study, “Lung transplant referral practice patterns: a survey of cystic fibrosis physicians and general pulmonologists,” was published in the journal BMC Pulmonary Medicine.

A lung transplant surgery can potentially extend the life of an individual with end-stage lung disease. To be considered a candidate for the procedure, a patient’s pulmonary specialist usually makes a referral to a transplant center, where the patient undergoes an extensive medical and psychosocial evaluation.

Advanced CF lung disease is the third most common cause of lung transplants in adults, as CF patients can die from respiratory failure unless they undergo the procedure.

The way a physician practices can help either expedite, delay, or preclude referral for a lung transplant. However, transplant referral triggers and barriers in clinical practice are not well understood.

A group led by researchers at Massachusetts General Hospital in Boston hypothesized that referral patterns would differ between CF specialists and general pulmonary (non-CF) physicians, and sought to determine potential areas of intervention that can help promote early lung transplant referral.

The team designed two web-based surveys that focused on the triggers and barriers of lung transplant referral, and emailed them to pulmonologists practicing in the New England region.

One questionnaire was sent to 61 CF specialists, while the second was sent to 61 general pulmonary providers practicing at the same institutions.

A total of 43 (70%) responses were received for the CF specialist survey, and 25 (41%) for the non-CF provider survey.

Results showed that the major reasons CF specialists referred their patients for a lung transplant included having rapidly declining lung function (91%), and a forced expiratory volume in one second (FEV₁; a measure of lung function) below 30% predicted (74%).

Most CF and non-CF specialists identified active substance use as a barrier to referral. Specifically, 65% of CF specialists and 96% of non-CF specialists considered active tobacco use an absolute counter-indication for lung transplant referral. Similarly, 47% of CF specialists and 52% of non-CF providers considered current inhaled cannabis use also to be an absolute counter-indication for referral.

Additionally, 63% of CF specialists and 80% of non-CF providers would not refer a patient if he/she had an active alcohol or substance use disorder.

These results suggest that a high percentage of both CF and non-CF pulmonologists consider tobacco use, alcohol dependence, and substance use as precluding factors for lung transplant referral.

However, the updated Cystic Fibrosis Foundation lung transplant referral guidelines, revised in 2019, identify substance use as a modifiable barrier — because the patient can quit — that should not preclude referral when the patient meets other criteria.

Therefore, according to the team, there is a need for pulmonologists to distinguish between referral criteria (when the patient is referred for a lung transplant) and listing criteria (when a patient is put on the waitlist) for a transplant, and not to defer referral.

In addition to substance abuse, 42% of CF specialists and 40% of non-CF providers said they would not refer patients who had difficulty adhering to a daily medication regimen for a lung transplant.

Researchers also found that up to 42% of CF specialists would potentially delay their referral if a triple-combination therapy or another promising new therapy were anticipated.

Concerning pre-referral medical workups, most CF and non-CF providers stated that they routinely obtain an echocardiogram, six-minute walk test/physical therapy evaluation, and chest imaging for their patients. However, in general, non-CF providers performed a more robust pre-referral medical workup, while CF specialists completed a more extensive psychosocial evaluation.

In both groups, communication with lung transplant programs was reported as inadequate.

In fact, communication between CF specialists and lung transplant centers is emphasized in the updated guidelines, and results from this study show that direct communication expectations, both pre- and post-evaluation, were not being met.

Therefore, “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,” the researchers wrote.

“Our study suggests that many CF provider’s current practice patterns differ from the updated recommendations, underscoring the need to educate providers on these new guidelines and their rationale,” the team added.