Quality of Life and Eligibility for Specific Financial Assistance for Medical Expenses: A Cross-Sectional Web-Based Survey among Patients with Inflammatory Bowel Disease in Japan
Quality of Life and Eligibility for Specific Financial Assistance for Medical Expenses: A Cross-Sectional Web-Based Survey among Patients with Inflammatory Bowel Disease in Japan
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DOI：
10.3390/gidisord2020012
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发表时间：
2020-05
影响因子：
0.7
通讯作者：
Huyen Thi Thanh Tran;Shota Saito;S. Noto;Kenji Suzuki
中科院分区：
文献类型：
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作者：
Huyen Thi Thanh Tran;Shota Saito;S. Noto;Kenji Suzuki
对罕见病和疑难杂症患者的特定财政援助是日本公共卫生体系的一部分。这项调查旨在阐明日本炎症性肠病（IBD）患者获得这种特定经济援助的资格与生活质量（QOL）之间的关系。在日本对300名IBD患者进行了一项全国性的基于网络的调查。问卷项目包括社会经济特征和生活质量，采用五维五水平欧洲生活质量量表（EQ-5D-5L）进行评估。不符合特定经济援助资格的受访者比例在克罗恩病（CD）患者中为11.0%，在溃疡性结肠炎（UC）患者中为34.0%。对于CD患者，无援助组和援助组之间的中位EQ-5D-5L效用权重无显著差异（p = 0.2222）。对于UC患者，无援助组的中位EQ-5D-5L效用权重显著高于援助组（p = 0.0034）。本研究表明，难治性和罕见病法律的修订对日本IBD患者的生活质量没有负面影响。根据我们的研究结果，可能有必要进一步研究IBD患者报告的结果，以告知卫生政策制定者。
Specific financial assistance for people with rare and intractable diseases is part of Japan’s public health system. This survey aimed to clarify the relationship between eligibility for this specific financial assistance and quality of life (QOL) among individuals with inflammatory bowel disease (IBD) in Japan. A nationwide, web-based survey was conducted in Japan among 300 people with IBD. Questionnaire items covered socioeconomic characteristics and QOL, assessed with the five-dimension, five-level EuroQol (EQ-5D-5L). The percentage of respondents who were ineligible for specific financial assistance was 11.0% among those with Crohn’s disease (CD) and 34.0% among those with ulcerative colitis (UC). For those with CD, the median EQ-5D-5L utility weight did not differ significantly between the non-assistance and assistance groups (p = 0.2222). For those with UC, the median EQ-5D-5L utility weight was significantly higher in the non-assistance group than in the assistance group (p = 0.0034). The present study demonstrated that the revision of the law on intractable and rare diseases has not had a negative influence on the QOL of patients with IBD in Japan. Based on our findings, further research on patient-reported outcomes among individuals with IBD may be necessary to inform health policy makers.