wine EJ. Quality of Lifemeasurement in inflammatory bowel disease. Scand J Gastroentcrol 1993;2X Suppl 199:36-39. Health-related Quality of Life (HRQOL) is gaining increased notoriety in the study of chronic diseases. These indices provide a subjective, quantitative assessment of health perception and function in the physical, social and emotional domains which is distinct from measures of disease activity. HRQOL tools can be promoted to evaluate the natural history of the disease, to catalogue the needs of inflammatory bowel disease (IBD) patients, to focus the direction of research and allocation of limited resources, and to assess outcome in clinical trials. While generic measures of HRQOL permit comparison among disease populations, they may be too imprecise to reflect impairment of function in young IBD patients or to gauge response to therapy. Several IBD specific HRQOL measures have been developed to address these applications. A survey using the McMaster IBDQ showed that 182 IBD patients had significantly worse HRQOL than 48 normal controls. Several studies have observed that patients with ulcerative colitis experience better HRQOL than those with Crohn's disease and Crohn's patients who have had surgery have an even poorer HRQOL. Two clinical trials in Crohn's disease have utilized the IBDQ to measure therapeutic efficacy and demonstrated that HRQOL compared favourably with other measures of outcome. Self-administration of the IBDQ may reduce costs of clinical research without altering results. Future direction of HRQOL in IBD may be targeted at long-range assessment of costs and benefits to therapy.
THE CHRONICITY OF INFLAMMATORY BOWEL DISEASEregard for rigorous validation. poor sensitivity to detect functional disability and psychosocial problems, or drug toxicity, Scand J Gastroenterol Downloaded from informahealthcare.com by University of Otago on 12/26/14For personal use only.
Irvine EJ. Quality of Life in inflammatory bowel disease: biases and other factors affecting scores. Scand J Gastroenterol 1995;30 Suppl208:136-40.Health-Related Quality of Life (HRQOL) measurement has become a key element in the assessment of chronic diseases during the execution of clinical research and in the delivery of health care. Poor HRQOL is clearly recognized in patients with inflammatory bowel disease (IBD) and relates to the type of disease (Crohn's disease or ulcerative colitis) and disease seventy. It is also linked to non-disease elements e.g., gender, age, personality, cultural factors and coping skills. The dynamic properties of HRQOL may be depicted using different measurement tools and the portrayal may well differ when using a generic-or a disease-specific instrument. HRQOL status also changes with time, as do disease and non-disease parameters. Several examples of population selection bias are demonstrated using the Sickness Impact Protile (SIP), the time trade-off and the McMaster Inflammatory Bowel Disease Questionnaire (IBDQ). While HRQOL is generally good in IBD patients, mean HRQOL scores are still significantly depressed compared to normal controls. The IBDQ, a disease-specific HRQOL instrument, has yielded consistent results in both cross-sectional studies and prospective clinical trials. Such HRQOL instruments can be used to identify the types of new therapies that are needed, subgroups of patients which might benefit from specific treatments, patient satisfaction, treatment efficacy and efficiency. These applications must always be undertaken with careful attention to rigorous research methodology.
There is no doubt that patients with immune-mediated inflammatory diseases (IMID) have a significantly impaired quality of life (QOL). Pain and disability often leave these patients helpless and frustrated. The recognition that addressing physical and psychological functioning plays a significant role in an overall treatment approach led to the inclusion of QOL measures as secondary outcomes in clinical trials with IMID patients. To that end, both generic and disease-specific instruments have been utilized. Measurement of health-related QOL (HRQOL) and patient-reported outcomes (PRO) in a controlled manner allows for better understanding of the correlation between different aspects of disease activity and QOL. In addition, the effects of different therapeutic options on HRQOL-related outcomes can be further evaluated. This 3-part section describes key QOL-related complaints of patients with IMID affecting joints, skin, or gut. An overview of the strengths and weaknesses of various commonly used HRQOL instruments is provided. Finally, the influence of anti-tumor necrosis factor-α agents on HRQOL outcomes, as assessed in recent clinical trials, is highlighted.
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