Daily Life Challenges and Unmet Medical Needs of Patients With Inclusion Body Myositis: Insights From a Comprehensive Questionnaire Survey

INTRODUCTION/AIMS: Inclusion body myositis (IBM) is a progressive inflammatory myopathy characterized by weakness of the quadriceps and finger flexors, and often accompanied by dysphagia, resulting in substantial functional impairment. However, there is limited data on the daily living conditions and support needs of patients. This study evaluated the clinical characteristics, healthcare utilization, and unmet needs of patients with IBM in Japan. METHODS: A nationwide survey was conducted from April to September 2025 among 89 members of a Japanese IBM patient association. Of 59 responses received, 58 were included in the analysis. The questionnaire assessed patient demographics, disease characteristics, healthcare and social service use, satisfaction with medical care, employment status, information needs, and perceptions of healthcare policies regarding IBM. RESULTS: In the final participant cohort, the male-to-female ratio was 2:1, mean age at onset was 61.8 years, and mean disease duration was 10.0 years. Lower limb weakness (98%), finger muscle weakness (95%), and dysphagia (64%) were the most common symptoms. Disability certification and long-term care insurance were used by 74% and 69% of patients, respectively. Satisfaction with hospital services was generally high, whereas satisfaction with consultation services was only moderate. Notably, 96% of patients supported establishing specialized information centers for IBM. DISCUSSION: These findings highlight the substantial daily burdens and unmet support requirements of patients with IBM in Japan, underscoring the need for improved care coordination and patient-centered policies.