Incorporating Quality of Life and Patient Satisfaction Measures into a Transplant Outcomes Assessment Program: Technical and Practical Considerations

Abstract

Objective

To present an overview of methods for incorporating the measurement of health-related quality of life and patient satisfaction into a comprehensive outcomes assessment program in the organ transplantation setting. An introduction to basic psychometric concepts as they relate to survey instrument selection is presented, and the complementary nature of health status instruments and preference-based utility measures is discussed. The role of these concepts and measures in a transplant outcomes assessment and research program and the psychometric evidence for selected instruments are described.

Data Sources

Descriptions of specific survey instruments were abstracted from published reports or manuals. Data describing the Vanderbilt Transplant Center Patient Satisfaction Inventory were derived from a single institution transplant outcomes research database.

Study Selection and Data Extraction

Previously reported research was selected from the literature to provide brief examples of basic concepts, which are not intended to be a comprehensive review of these topics. Illustrative data from the Vanderbilt program were extracted from a longitudinal database.

Data Synthesis

Data and published reports were synthesized for descriptive and illustrative purposes.

Conclusions

This review describes various types of health-related quality of life and patient satisfaction outcomes assessment tools and measurement methods; introduces considerations relevant to survey instrument selection and development; and outlines the evolution of and psychometric support for a transplant center-wide outcomes assessment and research program.

Get full access to this article

View all access options for this article.

References

Cronbach

Meehl

. Construct validity in psychological tests. Psychol Bull. 1955;52:281–302.

Hays

Anderson

Revicki

. Assessing the reliability and validity of measurement in clinical trials. In: Staquet

, ed. Quality of Life Assessment in Clinical Trials New York, NY: Oxford University Press; 1998:169–182.

Norman

Sloan

Wyrwich

. Interpretation of changes ion health-related quality of life: The remarkable universality of half a standard deviation. Med Care. 2003;41:582–592.

Beaton

. Simple as possible? Or too simple? Possible limits to the universality of the one half standard deviation. Med Care. 2003;41:593–596.

WHOQOL Group. Study protocol for the World Health Organization project to develop a quality of life assessment instrument (WHOQOL). Qual Life Res. 1993;2:153–159.

Ware

Jr Kosinski

Gandek

. SF-36 Health Survey: Manual & Interpretation Guide Lincoln, RI: QualityMetric, Inc; 2000.

Hays

Prince-Embry

Chen

. RAND-36 Health Status Inventory Scoring Manual San Antonio, TX: The Psychological Corporation; 1998.

McEwen

. The Nottingham health profile. In: Walker

Rosser

, eds. Quality of Life Assessment: Key Issues for the 1990s Dordrecht, The Netherlands: Kluwer; 1992.

Chambers

. The McMaster health index questionnaire. In: Walker

Rosser

, eds. Quality of Life: Assessment and Application London, United Kingdom: MTP Press; 1988.

10.

Franke

Reimer

Kohnle

Leutkes

Maehner

Heeman

. Quality of life in end-stage renal disease patients after successful kidney transplantation: Development of the ESRD symptom checklist-transplantation module. Nephron. 1999;83(1):31–39.

11.

Belle

Porayko

Hoonagle

Lake

Zetterman

, for the NIDDK LTD. Changes in quality of life after liver transplantation among adults. Liver Transpl Surg. 1997;3:93–104.

12.

Winsett

Stratta

Alloway

Wicks

Hathaway

. Immunosuppressant side effect profile does not differ between organ transplant types. Clin Transplant. 2001;15:46–50.

13.

Shaw

Johnson

Coons

. US valuation of the EQ-5D Health States: Development and testing if the D1 valuation model. Med Care. 2005;3:203–220.

14.

Kaplan

. Profile versus utility based measures of outcome for clinical trials. In: Staquet

, ed. Quality of Life Assessment in Clinical Trials New York, NY: Oxford University Press; 1998:69–90.

15.

Bennett

Torrance

. Measuring health state preferences and utilities: Rating scales, time trade off, and standard gamble techniques. In: Spilker

, ed. Quality of Life and Pharmacoeconomics in Clinical Trials. 2nd ed. Philadelphia, PA: Lippincott-Raven; 1996:253–265.

16.

Kerrigan

Collins

Kneeland

. Measuring health state preferences in women with breast hypertrophy. Plast Reconstr Surg. 2000;106:280–288.

17.

Kaplan

Anderson

. The quality of well-being scale: Rationale for a single quality of life index. In: Walker

Rosser

, eds. Quality of Life: Assessment and Application London, United Kingdom: MTP Press; 1998:51–77.

18.

Torrance

Feeny

. Utilities in quality-adjusted life years. Int J Technol Assess Health Care. 1989;5:559–575.

19.

Torrance

Feeny

Furlong

Barr

Zhang

Wang

. Multiattribute utility function for a comprehensive health status classification system: Health Utilities Index Mark 2. Med Care. 1996;34:702–722.

20.

Feeny

Furlong

Torrance

. Multiattribute and single-attribute utility functions for the Health Utilities Index Mark 3 system. Med Care. 1996;34:702–722.

21.

Brooks

. EuroQoL: The current state of play. Health Policy. 1996;37:53–72.

22.

Luo

Johnson

Shaw

Feeny

Coons

. Self-reported health status of the general adult U.S. population as assessed by the EQ-5D and Heath Utilities Index. Med Care. 2005;43:1078–1086.

23.

Williams

. Patient satisfaction: A valid concept? Soc Sci Med. 1994;38:509–516.

24.

Rosenthal

Shannon

. The use of patient perceptions in the evaluation of health-care delivery systems. Med Care. 1997;35(11 suppl):NS58–NS68.

25.

Urden

. Patient satisfaction measurement: Current issues and implications. Outcomes Manage. 2002;6:125–131.

26.

Derogatis

. PAIS and PAIS SR: Administration, Scoring and Procedures Manual, II Towson, MD: Clinical Psychometric Research, Inc; 1990.

27.

Feurer

Moore

Speroff

. Refining a health-related quality of life assessment strategy for solid organ transplant patients. Clin Transplant. 2004;18(suppl 12):39–45.

28.

Feurer

Liu

Speroff

Strickland

Harrison

Pinson

. Measuring patient satisfaction before and after organ transplantation: Scaling and preliminary validation of an inventory. In: Methodological Issues in Health Services and Outcomes research: Proceedings of the International Conference on Health Policy Research. Alexandria, VA: Health Policy Statistics Section of the American Statistical Association; 2003:27–28.

29.

Feurer

Liu

Wisawatapnimit

Pinson

. Development, scaling and implementation of a patient satisfaction inventory in transplant candidates and recipients. The 2006 Joint Statistical Meetings. Available at: http://www.amstat.org/meetings/jsm/2006/PDFs/JSM06AbstractBook.pdf. Accessed March 10, 2007.