title: Developing a health-related quality-of-life measure for end-stage renal disease: The CHOICE Health Experience Questionnaire.
abstract: The Choices for Healthy Outcomes in Caring for End-Stage Renal Disease ([ESRD] CHOICE) Study was designed to evaluate the effectiveness of alternative dialysis prescriptions. As part of CHOICE, we developed an instrument for measuring health-related quality of life (HRQOL) for patients with ESRD that would complement the Medical Outcomes Study 36-Item Short-Form Survey (SF-36) and be sensitive to differences in dialysis modality (hemodialysis [HD] and peritoneal dialysis [PD]) and dialysis dose. The selection of HRQOL domains to be included was based on: (1) a structured literature review of 47 articles describing 53 different instruments; (2) content analysis of five focus groups with HD and PD patients, nephrologists, and other providers; (3) a survey of 110 dialysis providers about features of different modalities that affect patient HRQOL; and (4) a semistructured survey of 25 patients with ESRD on the effects of dialysis on functioning and HRQOL. To help prioritize domains and items identified by these methods, a representative sample of 136 dialysis patients rated each item for frequency and bother. A panel of nephrologists provided advice about the salience of items to modality or dose. Items and scales were selected with a preference for existing measures tested in patients with ESRD and were tested for reliability and validity. The first four steps yielded 22 HRQOL domains that included 96 items: 8 generic domains in the SF-36 (health perceptions, physical, social, physical and emotional role function, pain, mental health, and energy); 8 additional generic domains (cognitive functioning, sexual functioning, sleep, work, recreation, travel, finances, and general quality of life); and 6 ESRD-specific domains (diet, freedom, time, body image, dialysis access [catheters and/or vascular], and symptoms). New items were developed or adapted to assess ESRD-specific domains. Scales for these items showed adequate internal consistency (Cronbach's alpha > 0.70, except for time [alpha = 0.57] and quality of life [alpha = 0.68]), as well as convergent and discriminant construct validity in a sample of 928 patients. The final questionnaire included 21 domains (time was deleted) and 83 items. We have designed a patient-centered instrument, the CHOICE Health Experience Questionnaire, that addresses domains that may be sensitive to differences in dialysis modality and dose and shows evidence for reliability and validity as a measure of HRQOL in ESRD.
authors.affiliation: Departments of Health Policy and Management and Epidemiology, Johns Hopkins University School of Hygiene and Public Health, Baltimore, MD 21205-2223, USA.  
authors.forename: A W
authors.initials: AW
authors.lastname: Wu
authors.forename: N E
authors.initials: NE
authors.lastname: Fink
authors.forename: K A
authors.initials: KA
authors.lastname: Cagney
authors.forename: E B
authors.initials: EB
authors.lastname: Bass
authors.forename: H R
authors.initials: HR
authors.lastname: Rubin
authors.forename: K B
authors.initials: KB
authors.lastname: Meyer
authors.forename: J H
authors.initials: JH
authors.lastname: Sadler
authors.forename: N R
authors.initials: NR
authors.lastname: Powe
mesh_terms: D000328:Adult; D015142:Baltimore; D003625:Data Collection / Q000295:instrumentation*; D017144:Focus Groups; D006801:Humans; D007676:Kidney Failure, Chronic / Q000628:therapy*; D008875:Middle Aged; D010531:Peritoneal Dialysis, Continuous Ambulatory / Q000592:standards*; D011159:Population Surveillance / Q000379:methods; D011788:Quality of Life; D006435:Renal Dialysis / Q000592:standards*; D015203:Reproducibility of Results; D012680:Sensitivity and Specificity; D011795:Surveys and Questionnaires; D016896:Treatment Outcome; D014481:United States