Impact of inflammatory bowel disease on Japanese patients’ quality of life: results of a patient questionnaire survey

BACKGROUND: Inflammatory bowel disease (IBD) has a significant negative impact on quality of life (QOL); however, the direct impact of IBD on several aspects of patients’ lives is unknown. The IMPACT survey was conducted in Europe in 2010–2011 to determine this impact. We conducted the IMPACT survey in Japan and compared the results between subgroups of patients with ulcerative colitis (UC) and Crohn’s disease (CD). METHODS: The 52-item IMPACT survey questionnaire assessing treatment and the impact of IBD on patients’ lives was translated into Japanese and administered to IBD patients recruited through patient advocacy groups. RESULTS: Between June 2013 and January 2014, 172 Japanese IBD patients completed the questionnaire (including 84 UC and 83 CD patients). Half of all patients (84/172, 48.8 %) were satisfied with their treatment plan, and half of those who had undergone surgery were satisfied with the outcome (46/87, 52.9 %). Although 34.9 % (60/172) of patients had not been hospitalized in 5 years, 50.0 % (86/172) had been hospitalized for more than 10 days. During the most recent flare, 49.4 % (85/172) of patients had to reschedule appointments because of IBD. Moreover, 32.0 % (55/172) of patients had to make adjustments such as working part-time or at home to avoid taking sick days; 35.5 % (61/172) of patients felt that they had lost a job because of IBD. CONCLUSIONS: Our survey results indicate that IBD patients’ lives and social activities are affected by the deterioration of QOL due to IBD and its symptoms. ELECTRONIC SUPPLEMENTARY MATERIAL: The online version of this article (doi:10.1007/s00535-016-1241-x) contains supplementary material, which is available to authorized users.