Clinicians and policymakers are recognizing the importance of measuring health-related quality of life (HRQL) to inform patient management and policy decisions. Self- or interviewer-administered qu...

Measuring health-related quality of life.

ObjectiveTo develop an objective scale to measure the severity of the multiple organ dysfunction syndrome as an outcome in critical illness.DesignSystematic literature review; prospective cohort study.SettingSurgical intensive care unit (ICU) of a tertiary-level teaching hospital.PatientsAll patient

Multiple organ dysfunction score : a reliable descriptor of a complex clinical outcome

Since 1948, when the World Health Organization defined health as being not only the absence of disease and infirmity but also the presence of physical, mental, and social well-being,1 quality-of-life issues have become steadily more important in health care practice and research. There has been a nearly exponential increase in the use of quality-of-life evaluation as a technique of clinical research since 1973, when only 5 articles listed “quality of life” as a reference key word in the MEDLINE data base; during the subsequent five-year periods, there were 195, 273, 490, and 1252 such articles. The growing fields of outcomes . . .

Assessment of quality-of-life outcomes.

Objective. —To evaluate how well quality of life is being measured in the medical literature and to offer a new approach to the measurement. Data Sources. —Original English-language articles having the term "quality of life" in their titles were identified from a recent Quality-of-Life Bibliography and from two MEDLINE searches. Articles were eligible for review only if they described or used one or more "quality-of-life" instruments. Study Selection. —Twenty-five articles were randomly selected from each of the three data sources. Data Extraction. —Each article was reviewed for its compliance with two sets of criteria having several components, which are cited under "Data Synthesis." Data Synthesis. —(1) Investigators conceptually defined quality of life in only 11 (15%) of the 75 articles; identified the targeted domains in only 35 (47%); gave reasons for selecting the chosen quality-of-life instruments in only 27 (36%); and aggregated their results into a composite quality-of-life score in only 27 (38%) of 71 eligible articles. (2) No article distinguished "overall" quality of life from health-related quality of life; patients were invited to give their own separate rating for quality of life in only 13 articles (17%); and among 71 eligible articles, patients were asked to supplement the stipulated items with personal responses in only nine (13%) and to rate the importance of individual items in only six (8.5%). Conclusions. —Because quality of life is a uniquely personal perception, denoting the way that individual patients feel about their health status and/or nonmedical aspects of their lives, most measurements of quality of life in the medical literature seem to aim at the wrong target. Quality of life can be suitably measured only by determining the opinions of patients and by supplementing (or replacing) the instruments developed by "experts." (JAMA. 1994;272:619-626)

https://jamanetwork.com/journals/JAMA/articlepdf/378367/jama_272_8_045.pdf

A critical appraisal of the quality of quality-of-life measurements

https://www.gastrojournal.org/article/S0016-5085(98)70381-6/pdf

Inflammatory bowel disease: Etiology and pathogenesis

https://www.gastrojournal.org/article/0016-5085(89)90905-0/pdf

A New Measure of Health Status for Clinical Trials in Inflammatory Bowel Disease

To investigate the effect of inflammatory bowel disease (IBD) on the quality of life, we interviewed 43 patients with ulcerative colitis (UC) and 54 with Crohn's disease. Patients identified frequent and important problems in five areas. Primary bowel symptoms, systemic symptoms, and altered emotional function were common; functional and social impairment were less frequent. Systemic symptoms such as fatigue were more prevalent in patients with Crohn's disease. Apart from primary bowel complaints, patients seldom volunteered other facets of quality of life impairment; this was particularly true for impairment of emotional function. We conclude that despite troublesome intestinal and systemic symptoms, most patients with IBD avoid major disruption in work and personal lives. Physicians must inquire specifically about emotional problems relating to IBD; in particular, fear of surgery is important to address. Psychosocial interventions should be targeted to those patients with problems in this area.

Quality of life in patients with inflammatory bowel disease.

51Cr-EDTA was administered both orally and per rectum via a catheter to controls and to patients with inflammatory bowel disease. The patients were divided into two groups, either with active inflammation of the small bowel or with active inflammation of the colon. Fifteen patients with Crohn's disease of the small bowel and 19 patients with either Crohn's disease of the colon or ulcerative colitis were investigated. After oral administration of the probe, controls showed a median excretion of 1.17%/24 h of the dose compared to 3.47%/24 h by patients with small bowel disease and 6.07%/24 h by patients with colonic disease. After rectal administration, controls showed a median excretion of 0.74%/24 h of the dose compared to 0.93%/24 h by patients with small bowel disease and 5.73%/24 h by patients with colonic disease. The rectal test differentiated small bowel disease from colonic disease with an accuracy of 85%. The results confirmed the inflamed colon as a site of increased intestinal permeation.

R.L. Goodacre

Papers

A New Measure of Health Status for Clinical Trials in Inflammatory Bowel Disease

Quality of life in patients with inflammatory bowel disease.

Small bowel and colonic permeability to 51Cr-EDTA in patients with active inflammatory bowel disease.

Reversibility of increased intestinal permeability to 51Cr-EDTA in patients with gastrointestinal inflammatory diseases.

14C-urea breath test for the detection of Helicobacter pylori.