Facilitators and barriers to healthcare services among patients with Atypical Hemolytic-Uremic Syndrome: a qualitative study

This study aimed to comprehensively map the patient journey and identify critical facilitators and barriers to healthcare access for patients with Atypical Hemolytic-Uremic Syndrome (aHUS) in China. A qualitative approach, guided by the Levesque framework, was used to explore aHUS patients’ experiences. Participants included aHUS patients, caregivers (when patients were unable to independently participate due to age or frailty), and specialists. Semi-structured interviews were conducted via Tencent Meeting and telephone, and the visual timeline method was used to facilitate detailed recounting of patient experiences. Thematic analysis, incorporating frequency analysis and field notes, was performed on the collected data. The study was conducted in Shandong, China, from January to August 2023. Interviews were conducted with five adult patients, four caregivers, and nine aHUS specialists. Key facilitators to healthcare access for aHUS patients included family involvement, patient autonomy, online consultations, robust public transportation, social capital, and various forms of social support. Barriers identified included low awareness of aHUS, inadequate insurance coverage, substantial non-medical burdens, gaps in professional knowledge, suboptimal diagnostic techniques, underdeveloped referral systems, and the absence of dedicated patient organizations. This study identifies key barriers and facilitators affecting aHUS patients’ healthcare access and highlights the emotional, financial, and structural challenges they face. The study advocates for enhanced public awareness of rare diseases, integrating patient autonomy into decision-making, optimizing telemedicine, expanding insurance coverage, and advancing professional expertise through training and standardized diagnostics. These findings underscore the need for equitable, patient-centered care and call for further evaluation of policy impacts in China and other middle-income settings.