Development of the Kidney Disease Quality of Life (KDQOLTM) Instrument
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This paper describes the Kidney Disease Quality of Life (KDQOLTM) Instrument (dialysis version), a self-report measure that includes a 36-item health survey as the generic core, supplemented with multi-item scales targeted at particular concerns of individuals with kidney disease and on dialysis (symptom/problems, effects of kidney disease on daily life, burden of kidney disease, cognitive function, work status, sexual function, quality of social interaction, sleep). Also included were multi-item measures of social support, dialysis staff encouragement and patient satisfaction, and a single-item overall rating of health. The KDQOLTM was administered to 165 individuals with kidney disease (52% female; 48% male; 47% White; 27% African-American; 11% Hispanic; 8% Asian; 4% Native American; and 3% other ethnicities), sampled from nine different outpatient dialysis centres located in Southern California, the Northwest, and the Midwest. The average age of the sample was 53 years (range from 22 to 87), and 10% were 75 years or older. Internal consistency reliability estimates for the 19 multi-item scales exceeded 0.75 for every measure except one. The mean scores for individuals in this sample on the 36-item health scales were lower than the general population by one-quarter (emotional well-being) to a full standard deviation (physical function, role limitations due to physical health, general health), but similar to scores for dialysis patients in other studies. Correlations of the KDQOLTM scales with number of hospital days in the last 6 months were statistically significant (p<0.05) for 14 of the 19 scales and number of medications currently being taken for nine of the scales. Results of this study provide support for the reliability and validity of the KDQOLTM.
Development of the KDQOL measure was supported in part by a subgrant from the University of Arizona to RAND and an unrestricted research grant from Amgen to RAND. The measures weee developed for use in the Enhancing the Role of Pharmacists in the Care of Chronic Dialysis Patients Through the Use of Computer-modeled Algorithms for Epogen Dosing research project sponsored by Amgen through a grant to the University of Arizona (S. J. Coons, PI). A copy of the measures can be obtained from RAND free of charge.
Stewart AL, Greenfield S, Hays RD, Wells K, Rogers WH, Berry SD, McGlynn EA, Ware JE. Functional status and well-being of patients with chronic conditions: results from the Medical Outcomes Study. J Am Med Assoc 1989; 262: 907–13.
Consensus Development Conference Panel, Morbidity and Mortality of Renal Dialysis: an NIH Consensus Conference statement. Ann Internal Med 1994; 121: 62–70.
Proceedings from the conference on measuring, managing, and improving quality in the end-stage renal disease treatment setting. Am J Kidney Dis 1994; 24: 228–388.
Patrick DL, Deyo RA. Generic and disease-specific measures in assessing health status and quality of life. Med Care 1989; 27: MS217–32.
USA Renal Data System, USRDS 1993 Annual Data Report. The National Institutes of Health, National Institute of Diabetes and Digestive and Kidney Diseases, Bethesda, MD, March 1993.
Hays RD, Sherbourne CD, Mazel RM. The RAND 36-Item Health Survey 1.0. Health Econ 1993; 2: 217–27.
Ware JE, Sherbourne CD. The MOS 36-item short-form health survey (SF-36): I. Conceptual framework and item selection. Med Care, 1992; 30: 473–83.
Hays RD, Hayashi T. Beyond internal consistency reliability: rationale and User's Guide for Multitrait Scaling Analysis Program on the microcomputer. Behav Res Meth Instruments Computers 1990; 22: 167–75.
Ware JE, Snow KK, Kosinski M, Gandek B. SF-36 Health Survey: Manual and interpretation guide. Boston, Massachusetts: The Health Institute, 1993.
McHorney CA, Ware JE, Rogers W, Raczek AE, Lu JFR. The validity and relative precision of MOS short- and long-form health status scales and Dartmouth COOP charts. Med Care 1992; 30: MS253–65.
McHorney CA, WareJr. JE, Lu JFR, Sherbourne CD. The MOS 36-item short-form health survey (SF-36): IIL Tests of data quality, scaling assumptions, and validity among diverse patient groups. Med Care 1994; 32: 40–66.
Krueger RA. Focus Groups: A Practical Guide for Applied Research. Newbury Park: Sage, 1988.
Kurtin PS, Davies AR, Meyer KB, DeGiacomo JM, Kantz ME. Patient-based health status measures in outpatient dialysis: early experiences in developing an outcomes assessment program. Med Care 1992; 30: MS136–49.
Kurtin P, Nissenson AR. Variation in end-stage renal disease patient outcomes: What we know what should we know, and how do we find it out? J Am Soc Nephrol 1993; 3: 1738–47.
Kutner NC, Brogran D, Kutner MH. End-stage renal disease treatment modality and patients' quality of life. Am J Nephrol 1986; 6: 396–402.
Laupacis A, Wong C, Churchill D, and the Canadian Erythropoietin Study Group. The use of generic and specific quality-of-life measures in hemodialysis patients treated with erythropoietin. Control Clin Trials 1991; 12: 168s-79s.
Levin NW, Lazarus JM, Nissenson AR. Maximizing patient benefits with epoetin alfa therapy: national cooperative rHu erythropoietin study in patients with chronic renal failure—an interim report. Am J Kidney Dis 1993; 22: 3–12.
Whittington R, Barradell LB, Benfield P. Epoetin: A pharmacoeconomic review of its use in chronic renal failure and its effects on quality of life. PharmacoEconomics 1993; 3: 45–82.
Bergner M, Bobbit RA, Carter WB, Gilson BS. The Sickness Impact Profile: development and final revision of a health status measure. Med Care 1981; 19: 787–805.
Stewart AL, Ware JE, Sherbourne CD, Wells KB. Psychological distress/well-being and cognitive functioning measures. In: Stewart AL, Ware JE, eds. Measuring Functioning and Well-being: The Medical Outcomes Study Approach Durham, NC: Duke University Press, 1992: 102–42.
Jette AM, Davies AR, Cleary PD, Calkins DR, Rubenstein LV, Fink A, Kosecoff J, Young RT, Brook RH, Delbanco TL. The functional status questionnaire: reliability and validity when used in primary care. J Gen Internal Med 1986; 1: 143–9.
Sherbourne CD. Social functioning: sexual problems measures. In: Stewart AL, Ware JE, eds. Measuring Functioning and Well-being: The Medical Outcomes Study Approach. Durhan, NC: Duke University Press, 1992: 194–204.
Devinsky O, Vickery BG, Cramer J, Perrine K, Hermann B, Meador K, Hays RD. Development of the Quality of Life in Epilepsy (QOLTE) Inventory, submitted for publication.
Coulter ID, Hays RD, Danielson C. The Chiropractic Satisfaction Questionnaire. Topics in Clinical Chiropractic, in press.
Hays RD, Stewart AL, Sherbourne CD, Marshall GN. The ‘states versus weights’ dilemma in quality of life measurement. Qual Life Res 1993; 2: 167–168.
Cronbach LJ. Coefficient alpha and the internal structure of tests. Psychometrika 1951; 16: 297–334.
Hays RD, Anderson R, Revicki DA. tPsychometric evaluation and interpretation of health-related quality of life data. In: Schumaker S, Berzon R, eds. The International Assessment of Health-related Quality of Life: Theory, Translation, Measurement and Analysis. Oxford, England: Rapid Communications, in press.
Guttman LA. Some necessary conditions for common factor analysis. Psychometrika 1954; 19: 149–61.
Cattell RB. The scree test for the number of factors. Multivariate Behav Res 1966; 1: 245–76.
Montanelli RD, Humphreys LG. Latent roots of random data correlation matrices with squared multiple correlations on the diagonal: a Monte Carlo study. Psychometrika 1976; 41: 341–8.
Hendrickson AE, White PO. PROMAX: a quick method for rotation to oblique simple structure. Br J Stat Psychol 1964; 17: 65–70.
Liang MH, Larson MG, Cullen KE, Schwartz JA. Comparative measurement and efficiency and sensitivity of five health status instruments for arthritis research. Arthritis Res 1985; 28 542–7.
Nerenz DR, Repasky DP, Whitehouse F, Kahkomen DM. Ongoing assessment of health status in patients with diabetes mellitus. Med Care 1992; 30: MS112–24.
Shekelle P, Hays RD, Kallich JD. Quality of Life of Veterans with COPD/Asthma: Project Memorandum. RAND: Santa Monica, CA, 1994.
Rummel R. Applied Factor Analysis. Evanston: Northwestern University Press, 1970.
Hays RD, Marshall GN, Wang EYI, Sherbourne CD. Four-year cross-lagged associations between physical and mental health in the Medical Outcomes Study. J Consult Clin Psychol 1994; 62: 441–9.
- Development of the Kidney Disease Quality of Life (KDQOLTM) Instrument
Quality of Life Research
Volume 3, Issue 5 , pp 329-338
- Cover Date
- Print ISSN
- Online ISSN
- Kluwer Academic Publishers
- Additional Links
- end stage renal disease
- kidney disease
- instrument development
- quality of life
- Industry Sectors
- Author Affiliations
- 1. RAND, Social Policy Department, RAND, 1700 Main Street, 90407-2138, Santa Monica, CA, USA
- 2. Department of Medicine, UCLA, Los Angeles, CA, USA
- 3. UniHealth America, Burbank, CA, USA
- 4. Amgen, Thousand Oaks, CA, USA
- 5. Center for Pharmaceutical Economics, University of Arizona, Tucson, Arizona, USA