Edgell, E.T., Coons SJ, Carter WB, Kallich JD, Mapes D, Damush TM, Hays RD.  (1996).  A review of health-related quality-of-life measures used in end-stage renal disease.  Clinical Therapeutics, 18, 887-938.

Fukuhara S, Lopes AA, Bragg-Gresham JL, Kurokawa K, Mapes DL, Akizawa T, Bommer J, Canaud BJ, Port FK, Held PJ.   (2003).  Health-related quality of life among dialysis patients on threee continents: The Dialysis Outcomes and Practice Patterns Study.   Kidney International, 64: 1903-1910.  

Green, J., Fukuhara, S., Shinzato, T., Miura, Y., Wada, S., Hays, R.D., Tabata, R., Otsuka, H., Takai, I., Maeda, K., & Kurokawa, K. (2001). Translation, cultural adaptation, and initial reliability and multitrait testing  of the Kidney Disease Quality of Life instrument for use in Japan. Quality of Life Research, 10, 93-100.

Hays RD, Kallich JD, Mapes DL, Coons SJ, Carter WB. (1994).  Development of the Kidney Disease Quality of Life (KDQOL) Instrument.  Quality of Life Research, 3, 329-338.   (abstract available here.)

Hays RD, Kallich JD, Mapes DL, Coons SJ, Amin N, Carter WB, Kamberg C.  (1997).  Kidney Disease Quality of Life Short Form (KDQOL-SF™), Version 1.3: A Manual for Use and Scoring.   Santa Monica, CA: RAND, P-7994.  (See download page for a copy.)

Hays, R.D., Kallich, J.D., Mapes, D.L., Coons, S.J., Amin, N., Carter, W.B.  (1996).  Kidney Disease Quality of Life Short Form (KDQOL-SF™), Version 1.2: A Manual for Use and Scoring.   Santa Monica, CA: RAND, P-7928.  (See download page for a copy of the 1.3 manual which applies to 1.2.)

Kallich, J., Mapes, D., Hays, R., Coons, S., Carter, W., & Amin, N.  (1996).  Measuring patient outcomes: The Kidney Disease Quality of Life Instrument.  Dialysis Times, 3, 4-5.

Lopes AA, Bragg-Gresham JL, Satayathum S, McCullough K, Pifer T, Goodkin DA, Mapes DL, Young EW, Wolfe RA, Held PJ, Port FK; Worldwide Dialysis Outcomes and Practice Patterns Study Committee.  (2003).  Health-related quality of life and associated outcomes among hemodialysis patients of different ethnicities in the United States: the Dialysis Outcomes and Practice Patterns Study (DOPPS).  Am J Kidney Dis 2003 Mar; 41(3):605-15. (abstract available here.)

Mapes DL, Bragg-Gresham JL, Bommer J, Fukuhara S, McKevitt P, Wikstrom B, & Lopes AA. (2004).  Health-related quality of life in the Dialysis Outcomes and Practice Study (DOPPS).  Am J Kidney Dis 2004 Nov; 44(5 Suppl 2):54-60. (abstract available here.)

Mapes DL, Lopes AA, Satayathum S, McCullough KP, Goodkin DA, Locatelli F, Fukuhara S, Young EW, Kurokawa K, Saito A, Bommer J, Wolfe RA, Held PJ, Port FK. (2003).  Health-related quality of life as a predictor of mortality and hospitalization: the Dialysis Outcomes and Practice Patterns Study (DOPPS).   Kidney Int. 2003 Jul; 64(1):339-49.   (abstract available here.)

Mapes DL, McCullough KP, Meredith D, Locatelli F, Valderrabano F, &   Held PJ.  (1999).  Quality of life predicts mortality and hospitalization for hemodialysis patients in the US and Europe. Journal of American Society for Nephrology, 10, 249A.  (abstract available here.)

Rao, S., Carter, W.B., Mapes, D.L., Kallich, J.D., Kamberg, C.J., Spritzer, K.L.,& Hays, R.D.  (2000).  Development of subscales from the symptom/problems and effects of kidney-disease items in the Kidney Disease Quality of Life (KDQOL™) Instrument.  Clinical Therapeutics, 22, 1099-1111. (abstract available here.)

Rettig, R.A.,Sadler JH, Meyer KB, Wasson JH, Parkerson GR Jr, Kantz B, Hays RD, Patrick DL.   (1997).  Assessing health and quality of life outcomes in dialysis: A report on an Institute of medicine workshop.  American Journal of Kidney Disease, 30, 140-155.

Unruh, M., Miskulin, D., Yan, G., Hays, R.D., Benz, R., Kusek, J. W., Meyer, K. B., and the HEMO Study Group.   (2004.)   Racial differences in health-related quality of life among hemodialysis patients.  Kidney International, 65, 1482-1491. 

Unruh, M., Yan, G., Radeva, M., Hays, R.D., Benz, R., Athienites, N. V., Kusek, J., Levey, A. S., Meyer, K. B., and the HEMO Study Group.   Bias in Assessment of Health-Related Quality of Life in a Hemodialysis Population: A Comparison of Self-Administered and Interviewer-Administered Surveys in the HEMO Study.  Journal of the American Society of Neurology.  (abstract available here.)

Walters BA, Hays RD, Spritzer KL, Fridman M, Carter WB. (2002).  Health-related quality of life, depressive symptoms, anemia, and malnutrition at hemodialysis initiation.  American Journal of Kidney Disease, 40 (6), 1185-94.

Selected Presentations

Hays, R.D.  Patient-Reported Outcome Measures in Nephrology. Harbor-UCLA Division of Nephrology and Hypertension - Nephrology Grand Rounds.  Torrance, CA: November 28, 2011.

Hays, R.D.  (1998).   Historical development of quality of life measurement and use of the KDQOL™.  National Kidney Foundation Spring Clinical Meeting.

Hays, R., Kallich, J., Mapes, D., Carter, W., & Coons, S.  (1994).  The KDQOL™: An instrument to measure health-related quality of life and the burden of disease for patients with end stage renal disease.  Institute of Medicine Conference on Assessing Functional Outcomes, Health Status, and Health-Related Quality of Life.   

Kallich, J., Carter, W., Hays, R., Coons, S., & Mapes, D.  (1994).  The development of the KDQOL™: Reliability and validity.  American Society of Nephrology Annual Meeting.

Kallich, J.  (1996).  Quality of life for patients with end stage renal failure.  Nephrology Grand Rounds, New York Hospital and Cornell Medical Center.

Rao, S., Carter, W.B., Mapes, D.L., Kallich, J.D., Kamberg, C.J., Spritzer, K.L., & Hays, R.D. (2000, May).   Clinical and health-related quality of life trajectories among individuals with kidney disease.  Poster presented at the meeting of the Drug Information Association Annual Workshop on Pharmaceutical Outcomes Research, Seattle, WA.