Patient-reported barriers to treatment access and home delivery in rare cancers across five European countries.

Abstract

1551 Background: Patients with rare diseases, including rare cancers, frequently experience barriers to timely treatment access. Sciensus, an end-to-end pan-European service partner, and Rare Patient Voice, a patient-led advocacy organisation, conducted a multicounty, European survey to characterise treatment logistics, delivery models and patient burden, with a focus on implications for oncology populations. Methods: A cross-sectional survey was conducted in December 2025 among adult patients with rare diseases, including cancer diagnosis, and caregivers across Italy, the United Kingdom, France, Spain, and Germany. Quantitative and qualitative data were collected on treatment access, medication collection or home delivery, financial and emotional burden, reliability of services, and participation in Early Access Programs (EAPs). Descriptive analyses were performed. Results: Among 860 respondents, approximately 120 (14% of total; 28% of validated rare disease responses) reported a cancer diagnosis spanning ~34 cancer types. While most respondents reported infrequent treatment delays, a notable minority experienced frequent disruptions. Over half reported no access to, or lack of awareness of, home delivery services. However, more than 40% indicated that home delivery would significantly or fundamentally improve quality of life. Ratings of homecare reliability varied widely, ranging from very poor to excellent, indicating substantial inconsistency across delivery models and regions. Conclusions: Patients with rare cancers in Europe experience fragmentation and heterogeneity across treatment access pathways. Limited awareness, variable availability, and inconsistent reliability of homebased delivery services likely contribute to ongoing burden. Additional longitudinal study of burden should be conducted to confirm the findings of the experiences in this study. Expanding, standardising and systematising patient-centred delivery models represents a key opportunity to improve continuity of care and quality of life for oncology patients with complex needs.