Burisch J, Weimers P, Pedersen N, Cukovic-Cavka S, Vucelic B, Kaimakliotis I, Duricova D, Bortlik M, Shonová O, Vind I, Avnstrøm S, Thorsgaard N, Krabbe S, Andersen V, Dahlerup J F, Kjeldsen J, Salupere R, Olsen J, Nielsen K R, Manninen P, Collin P, Katsanos K H, Tsianos E V, Ladefoged K, Lakatos L, Ragnarsson G, Björnsson E, Bailey Y, O'Morain C, Schwartz D, Odes S, Valpiani D, Boni M C, Jonaitis L, Kupcinskas L, Turcan S, Barros L, Magro F, Lazar D, Goldis A, Nikulina I, Belousova E, Fernandez A, Sanroman L, Almer S, Zhulina Y, Halfvarson J, Arebi N, Diggory T, Sebastian S, Lakatos P L, Langholz E, Munkholm P
Digestive Disease Centre, Medical Section, Herlev University Hospital, Copenhagen, Denmark.
Digestive Disease Centre, Medical Section, Herlev University Hospital, Copenhagen, Denmark.
J Crohns Colitis. 2014 Sep;8(9):1030-42. doi: 10.1016/j.crohns.2014.01.028. Epub 2014 Feb 21.
BACKGROUND & AIMS: Health-related quality of life (HRQoL) is impaired in patients with Inflammatory Bowel Disease (IBD). The aim was prospectively to assess and validate the pattern of HRQoL in an unselected, population-based inception cohort of IBD patients from Eastern and Western Europe.
The EpiCom inception cohort consists of 1560 IBD patients from 31 European centres covering a background population of approximately 10.1 million. Patients answered the disease specific Short Inflammatory Bowel Disease Questionnaire (SIBDQ) and generic Short Form 12 (SF-12) questionnaire at diagnosis and after one year of follow-up.
In total, 1079 patients were included in this study. Crohn's disease (CD) patients mean SIBDQ scores improved from 45.3 to 55.3 in Eastern Europe and from 44.9 to 53.6 in Western Europe. SIBDQ scores for ulcerative colitis (UC) patients improved from 44.9 to 57.4 and from 48.8 to 55.7, respectively. UC patients needing surgery or biologicals had lower SIBDQ scores before and after compared to the rest, while biological therapy improved SIBDQ scores in CD. CD and UC patients in both regions improved all SF-12 scores. Only Eastern European UC patients achieved SF-12 summary scores equal to or above the normal population.
Medical and surgical treatment improved HRQoL during the first year of disease. The majority of IBD patients in both Eastern and Western Europe reported a positive perception of disease-specific but not generic HRQoL. Biological therapy improved HRQoL in CD patients, while UC patients in need of surgery or biological therapy experienced lower perceptions of HRQoL than the rest.
炎症性肠病(IBD)患者的健康相关生活质量(HRQoL)受损。本研究旨在对来自东欧和西欧的未经过筛选的、基于人群的IBD患者起始队列的HRQoL模式进行前瞻性评估和验证。
EpiCom起始队列由来自31个欧洲中心的1560例IBD患者组成,其背景人群约为1010万。患者在诊断时和随访一年后回答疾病特异性的简短炎症性肠病问卷(SIBDQ)和通用的简短健康调查(SF-12)问卷。
本研究共纳入1079例患者。东欧克罗恩病(CD)患者的SIBDQ平均得分从45.3提高到55.3,西欧从44.9提高到53.6。溃疡性结肠炎(UC)患者的SIBDQ得分分别从44.9提高到57.4和从48.8提高到55.7。与其他患者相比,需要手术或生物制剂治疗的UC患者在治疗前后的SIBDQ得分较低,而生物治疗改善了CD患者的SIBDQ得分。两个地区的CD和UC患者的所有SF-12得分均有所改善。只有东欧的UC患者的SF-12总结得分等于或高于正常人群。
在疾病的第一年,药物和手术治疗改善了HRQoL。东欧和西欧的大多数IBD患者对疾病特异性HRQoL的看法是积极的,但对通用HRQoL并非如此。生物治疗改善了CD患者的HRQoL,而需要手术或生物治疗的UC患者对HRQoL的感受低于其他患者。