A QUALITY-OF-LIFE INDEX FOR INFLAMMATORY BOWEL-DISEASE

Health related quality of life (HRQOL) is a subjective quantitative me asure of health perception and function in the physical, social and em otional domains. Such health status measures can be exploited to evalu ate the natural history of disease, identify patient needs and researc h questions, quantify the effect of specific interventions in clinical trials and to monitor change. Conventional disease activity indices h ave failed to measure the impact of inflammatory bowel disease (IBD) a nd its consequences on family, social and working life. General measur es of HRQOL fail to reflect impairment experienced by a young populati on with predominant gastrointestinal symptoms. A specific quality of l ife index for IBD patients - IBDQ - has been developed. The IBDQ conta ins 32 items in four domains (bowel, systemic, social and emotional) w ith responses graded on a seven-point Likkert scale from 7 (not a prob lem) to 1 (a severe problem). In 97 IBD patients bowel and systemic fu nction were most notably impaired. A modified IBDQ was mailed to 182 w ell IBD patients and 48 normals. Total IBDQ and all dimensional scores were significantly worse in patients than in controls (P<0.01). Two c linical trials in Crohn's disease have used the IBDQ as an outcome mea sure of therapeutic efficacy. The largest, the Canadian Crohn's Relaps e Prevention Trial, evaluated continuous low dose cyclosporine versus placebo in 305 patients and further established the IBDQ as a valid, r eproduCible and responsive measure. Changes in IBDQ scores paralleled changes in standard disease activity scores and changes in therapy. Si milar correlations were observed in a trial of oral 5-aminosalicylic a cid or prednisone in mild to moderate ileocolonic Crohn's disease. Alt hough the IBDQ has previously been interviewer-administered, prelimina ry analysis of a nurse-administered versus a self-administered questio nnaire suggests that either method detects clinically important change and that the IBDQ can be reliably self-administered after a brief tra ining period. Therefore, the IBDQ reflects HRQOL and ought to be a cri tical outcome measure in all clinical trails of IBD. Future work in HR QOL to evaluate adverse drug effects or identify patient subgroups whi ch might benefit from nondrug therapies is warranted.