A Quality of Life Index for Inflammatory Bowel Disease

Health related quality oflife (HRQOL) is a suhJecttve quantitative measure of health percepnon and function in the physical, social and emotional domains. Such health status measures can be exploited to evaluate the natural lustory uf disease, identify patient needs and research questions, quannfy the eftcct of specific interventions in clinical trials and to monitor change. Conventional disease acttviLy' indices have faileJ to measure the impact of inflammatory bowel disease (IBD) anJ its consequences on family, social and working life. General measures of HRQOL fail to reflect impairment experienced by a young population with predominant gastrointestinal symptoms. A specific quality of life index for IBO patients -IBDQ -has hccn developed. The IBDQ contains 32 items in four domains (howel, systemic, social and emotional) with responses graded on a seven-point Likkert scale from 7 (not a problem) tl) 1 (a severe problem). In 97 IBO patients bowel and systemic function were most notably impaired. A modified lBDQ was mailed to 182 well IBD patients anJ 48 normals. Total IBDQ and all dimensional scores were ~ignificantly worse in patienr.s than in controls (P<O.Ol). Two clinical trials in Crohn's disca~e have used the IBDQ as an outcome measure of therapeutic efficacy. The largest, the Canadian Crohn's Relapse Prevention Trial, evaluated continuous low dose cyclosporine versus placebo in 305 patients and further established the IBDQ as a valiJ, reproducihle and responsive measure. Changes in IBDQ scores paralleled changes m standard disease activity' scores an<l changes in therapy. Similar correlations were observed in a trial of oral 5-aminosalicylic acid or prednisone in mild to moderate 1leocolonic Crohn's diseRse. Although the IBDQ has previously been interviewer-administered, preliminary analysis of a nurse-administered versus a self-administered questionnaire suggests that either