A Clinical Study Of Disability In Patients With Inflammatory Bowel Disease

BackgroundInflammatory bowel disease(IBD),including Crohn’s disease(CD)and ulcerative colitis(UC),is a set of chronic nonspecific intestinal inflammatory diseases,whose etiology has not been elucidated.According to the epidemiological data in China,the standardized incidence of IBD was 1.77/100,000 in daqing,heilongjiang province,3.14/100,000 in zhongshan,guangdong province.It can be seen that IBD is still a rare disease in China,but its number of patients has been increasing rapidly in the past 20 years.Moreover,up to 70%of patients with IBD developed penetrating or stenosis complications within 10 years after diagnosis,requiring hospitalization or even surgical treatment.In addition,most patients come on in its young age.Active disease,progressive course with cumulative intestinal damage,development of complications,the presence of extra-intestinal manifestations and treatment adverse effects may result in disability.Disability is defined by the World Health Organization(WHO)as "any restriction or lack(resulting from any impairment)of ability to perform an activity in the manner or within the range considered normal for a human being".Disability is an umbrella term,covering impairments,activity limitations and participation restrictions.An impairment is a problem in body function or structure;an activity limitation is a difficulty encountered by an individual in executing a task or action;while a participation restriction is a problem experienced by an individual in involvement in life situations.Since IBD is a chronic disabling disease,it is necessary to develop a set of specific tools that can assess the disability of IBD to help clinicians make appropriate decisions.The WHO developed the International Classification of Functioning,Disability and Health(ICF),a structured and complete framework that classifies body functions,structure,activity and participation.This framework has been endorsed for use as the international standard to describe and assess health and disability.Based on ICF,the IBD disability index(IBD-DI)was developed to evaluate the disability degree of IBD patients.At present,there are many translation versions in many regions and countries around the world,whose reliability and effectiveness have been verified.So far,there is no corresponding Chinese version and clinical application data in China.ObjectivePurposes of this study:1.Cooperate with the original author of IBD-DI to cross-cultural translate it,measure its reliability and validity,and develop Chinese version of IBD-DI which is suitable for the IBD population in China;2.From October 2018 to December 2018,questionnaires was given out to the IBD patients who were followed up in the second affiliated hospital of Soochow University to evaluate their disability;3.To find out the factors that can affect the disability of IBD patients and guide clinical practice.4.As a baseline study for prospective cohort studies,this study lays a foundation for future studies.MethodsAfter the consent of the French scholar Laurent Peyrin-Biroulet,who is the original author of IBD-DI,the Chinese version of IBD-DI was obtained by following Guidelines for the Process of Cross-Cultural Adaptation of Self-Report Measures.From October 2018 to December 2018,questionnaires was given out to the IBD patients who were followed up continuously in the second hospital affiliated to Soochow University.Questionnaires including informed consent of Clinical Research group,General Data Questionnaire,inflammatory bowel disease disability indix and inflammatory bowel disease questionnaire.After two weeks,30 IBD patients were randomly selected for the re-test of IBD-DI in Chinese version.The Chinese version of IBD-DI was evaluated by reliability and validity analysis,and the degree of disability was assessed from this study.Finally,univariate analysis and multivariate stepwise regression analysis were used to find out the factors that can affect the disability of IBD patients.ResultsA total of 170 IBD patients participated in this study,including 63 UC patients and 107 CD patients.The intraclass correlation coefficient(ICC)of IBD-DI(re-test)and IBD-DI(first test)was 0.81(95%CI:0.639-0.905),spearman-brown split reliability coefficient was 0.786,Cronbach ’a=0.866,which verified the reliability of the scale.Factor analysis confirmed the uniqueness of the scale and reduced the final Chinese version of IBD-DI to 14 items.There was a highly negative correlation between IBD-DI and IBDQ(removing question 28)(IBD:r=-0.830,P=0.000;CD:r=-0.844,P=0.000;UC:r=-0.808,P=0.000),which verified the validity of the scale.In our study,IBD-DI was ranging from 0 to 66.07,with an average score of 22.34(±14.50).Of all these 170 IBD patients,24.71%without disability,31.18%with mild disability,15.30%with moderate disability,and 28.82%with severe disability.By univariate analysis and multivariate stepwise regression analysis,it shows that the disease activity is one of the most important influence factors of disability in IBD.For CD,complex disease,lower frequency of physical exercise,pervious labor damagement and the history of traditional Chinese medicine treatment,total enteral nutrition at present can increase the degree of disability,previous use of biological agents can reduce the degree of disability.For UC,long duration can lead to a high degree of disability,low frequency of physical exercise may also increase the degree of disability.ConclusionThe Chinese version of IBD-DI is a reliable and effective tool for assessing the disability of IBD patients in China.75.29%IBD patients have different degree of disability.Disease activity is one of the most important influence factors of disability in IBD.For CD,complex disease,lower frequency of physical exercise,pervious labor damaged and the history of traditional Chinese medicine treatment,total enteral nutrition at present can increase the degree of disability,previous use of biological agents can reduce the degree of disability.For UC,long duration can lead to a high degree of disability,low frequency of physical exercise may also increase the degree of disability.