CF patients may struggle with lung transplant decisions, US survey finds
Less than half of adults at Washington clinic report discussing topic with doctor
Even though most people with cystic fibrosis (CF) place considerable importance on being prepared in making decisions about a lung transplant, many lack knowledge of the procedure and speak of feeling unprepared, especially those of lower socioeconomic status, a survey of adults at a University of Washington CF clinic showed.
Based on these findings, “earlier education and discussions about [lung transplant] represent areas for improvement in CF care,” the scientists wrote.
The study, “Attitudes toward and preparedness for lung transplantation among individuals with cystic fibrosis in the era of highly effective modulators,” was published in BMC Pulmonary Medicine.
Survey covered patients’ attitudes toward a transplant, knowledge of procedure
Respiratory problems are a leading CF symptom, and depending on the severity of lung disease progression, a transplant could be thought necessary.
Lung transplant is a complex procedure, and patients are recommended to start talking with their doctors early about the possibility of a lung transplant so that, should a transplant start to be considered, they are prepared to make a well-informed choice.
Scientists in the university’s division of pulmonary care, working with colleagues at other U.S. centers, surveyed adults treated at their CF clinic to understand patients’ attitudes toward a lung transplant, as well as their knowledge about the procedure.
The survey was given to 224 patients, and answered by 159 (71%). Most (89%) of responding patients were using CFTR modulators, a therapy that works boost the activity of the protein whose defect causes CF in people with particular disease-causing mutations.
Less than half (41%) of the respondents reported having ever talked about a lung transplant with their doctor, although these discussions were much more common among patients with substantial lung disease. Most patients who had engaged in these conversations thought doing so was useful. Among patients with no such discussions, more than half said they would be willing to talk with their doctor about a transplant.
Survey respondents noted several barriers to such discussions. These included not wanting to feel like a “burden” to family and friends, concerns about the procedure’s cost, and a desire to not think about a transplant until it might become necessary.
13% of survey’s 159 CF patients felt ‘very prepared’ for a transplant decision
When asked how prepared they felt to make decisions about lung transplant, 13% noted feeling very prepared, while more than 40% felt unprepared or unsure of their understanding. Still, virtually all the respondents agreed that it’s important for people with CF to be prepared to make decisions about a lung transplant.
Most participants also said they’d be interested in, and willing to use, a tool that helps and supports making such decisions, particularly an online tool.
“Individuals across a wide range of lung function placed a high value on preparedness for [lung transplant] decision-making,” the scientists wrote. They highlighted that even patients taking modulator therapies — many of whom thought that these treatments would lessen their likelihood of needing a transplant — placed importance on being prepared and having discussions.
When asked questions test their transplant knowledge, patients who felt prepared tended to score better than those who reported feeling unprepared. The researchers noted, however, that most patients were not able to correctly identify the median survival time — around 10 years — following a lung transplant for CF.
Researchers also noted that patients insured through Medicaid — the government-funded program that provides health insurance to low-income families in the U.S. — were more likely to report feeling unprepared. Medicaid-insured patients also tended to score worse on questions testing knowledge about a lung transplant, as did those with a high school education relative to patients who had attended college or held at least one university degree.
“Though current knowledge about [lung transplant] was overall lacking, it was most notable in those with lower socioeconomic status or less educational attainment,” the researchers wrote. These findings “highlight a special need in certain subpopulations where early planning may be advantageous, not only for financial and caregiver preparation, but also where directed education may be useful,” they added.
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