Treatment burden in primary ciliary dyskinesia in Switzerland

<bold>Background:</bold> The workload of healthcare including managing treatment creates an additional burden for patients living with chronic lung diseases affecting their well-being. For some diseases such as primary ciliary dyskinesia (PCD), this is not well described and acknowledged. We aimed to explore treatment burden among patients with PCD in Switzerland, in a mixed-method study. <bold>Method:</bold> For the first phase, we purposively invited participants ≥ 14 years or parents of children with PCD registered in the Swiss PCD registry (CH-PCD) to a focus group and individual qualitative semi-structured, in-depth interviews. We analysed thematically verbatim transcriptions of these interactions. <bold>Results:</bold> We conducted a focus group (2 adults, 1 adolescent, 1 parent), and 9 interviews (4 adults, 2 adolescents, 3 parents); 7 participants were female. Main themes related to treatment burden were 1) preparation or organisation of treatments and medical appointments, 2) time and effort spent on treatments, 3) impact on quality of life and mental health of patients and their families or partners, and 4) the struggle with financial or administrative burden from health insurance. Another burden highlighted was low awareness among physicians of the disease. Based on these results, we are developing a survey to send to all patients in the CH-PCD to study also associations with quality of life. <bold>Conclusion:</bold> Treatment burden affects patients with PCD and their families in several different ways. Study results will help identify methods to address treatment burden and support researchers and physicians to adapt treatment strategies and improve support for patients with PCD. <bold>Funding:</bold> SNF PZ00P3_185923, Johanna Dürmüller-Bol, BEAT-PCD