包涵体肌炎患者日常生活挑战与未满足的医疗需求：来自一项综合问卷调查研究的结果

文献信息

中文摘要

引言/目的： 包涵体肌炎（IBM）是一种进行性炎症性肌病，以股四头肌和手指屈肌无力为特征，并常伴有吞咽困难，导致显著的功能障碍。然而，关于患者日常生活状况和支持需求的数据有限。本研究评估了日本IBM患者的临床特征、医疗服务利用情况及未满足的需求。
方法： 于2025年4月至9月对日本IBM患者协会的89名成员开展了一项全国性调查。在收到的59份回复中，58份纳入分析。问卷评估了患者人口学特征、疾病特征、医疗和社会服务使用情况、对医疗服务的满意度、就业状况、信息需求以及对IBM相关医疗政策的看法。
结果： 在最终参与者队列中，男女比例为2:1，平均发病年龄为61.8岁，平均病程为10.0年。下肢无力（98%）、手指肌肉无力（95%）和吞咽困难（64%）是最常见的症状。分别有74%和69%的患者使用了残疾认证和长期护理保险。对医院服务的满意度总体较高，而对咨询服务的满意度仅为中等。值得注意的是，96%的患者支持建立IBM专门信息中心。
讨论： 这些发现凸显了日本IBM患者沉重的日常负担和未满足的支持需求，强调需要改善照护协调并以患者为中心制定政策。

英文摘要

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.