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

Huyen Thi Thanh Tran,Shinichi Noto,Kenji Suzuki,Shota Saito

doi:10.3390/gidisord2020012

Abstract

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.

Highlights

Inflammatory bowel disease (IBD) is a chronic disease of the gastrointestinal tract comprising of two main diseases, Crohn’s disease (CD) and ulcerative colitis (UC)
We obtained responses from 300 subjects with IBD (100 respondents with CD and 200 respondents with UC), and we included all data in the analyses
Our results demonstrated that the median EQ-5D-5L utility weight ranged from 0.469 for patients with CD treated with cytaphereses to 0.895 for patients with UC treated with 5-aminosalicylates who were not treated with steroids or immunomodulators

Summary

Introduction

Inflammatory bowel disease (IBD) is a chronic disease of the gastrointestinal tract comprising of two main diseases, Crohn’s disease (CD) and ulcerative colitis (UC). The predominant clinical manifestations of CD are abdominal pain and diarrhea, whereas rectal bleeding is the predominant symptom of UC. Both diseases can affect patients’ lives, including school, work, social activities, and family life, especially because the disease occurs during patients’ most productive time of life [1]. It is well known that the incidence and prevalence of IBD are increasing worldwide. The etiopathogenesis of IBD has been thought to be driven by the mutual reactions among host susceptibility genes, environmental factors including intestinal flora and food antigens, and abnormal immune balance. The Japanese government has conducted an IBD research project—a geographic and sequential study on the incidence of IBD—to clarify the disease’s etiopathogenesis. The Japanese government supports patients with IBD financially under the law described below

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