The study aimed to understand the humanistic experience of BOS from the perspective of patients and caregivers and to describe the economic impact of BOS treatment on the patient and their families, including challenges related to reimbursement and treatment access. Qualitative interviews were conducted with BOS physicians practicing predominantly within U.S. transplant centers or community-based practices (n=25 for LTx and n=25 for allo-HSCT, respectively) along with real-world data from patient charts to quantify the humanistic and caregiver burden. Approximately 2-3 patient record forms for diagnosed BOS patients were evaluated per site, comprising 61 LTx patients and 61 allo-HSCT patients.
The results of this survey highlight that patients diagnosed with BOS may face substantially increased mortality and high economic and humanistic burdens. The survey data presented at ATS show just how extensive this toll can be on patients and their caregivers. The potential for long hospitalizations, increased care costs, and the need for intensive support from family members and friends may further increase financial strain and caregiver burden. These findings reflect the urgency needed to develop new therapies that may help prevent or delay this devastating disease and improve the survival and quality of life for lung transplant patients.
Key observations included: