Developing a health-related quality-of-life measure for end-stage renal disease: The CHOICE health experience questionnaire

Albert W. Wu, Nancy E. Fink, Kathleen A. Cagney, Eric B. Bass, Haya R. Rubin, Klemens B. Meyer, John H. Sadler, Neil R. Powe

Research output: Contribution to journalArticle

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 α > 0.70, except for time [α = 0.57] and quality of life [α = 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.

Original languageEnglish (US)
Pages (from-to)11-21
Number of pages11
JournalAmerican Journal of Kidney Diseases
Volume37
Issue number1
DOIs
StatePublished - Jan 2001

Keywords

  • Developing a health-related quality-of-life measure for end-stage renal disease: The choice health experience questionnaire
  • Instrument development
  • Quality of life (QOL)

ASJC Scopus subject areas

  • Nephrology

Fingerprint Dive into the research topics of 'Developing a health-related quality-of-life measure for end-stage renal disease: The CHOICE health experience questionnaire'. Together they form a unique fingerprint.

  • Cite this