ISSUES IN THE DEFINITIONS OF HRQoL
Elena Gurková
Comenius University in Bratislava, Jesseniuss Faculty of Medicine in Martin, Institute
of Nursing, Martin, Slovakia
Korespondenční autor: Elena Gurková (gurkova@jfmed.uniba.sk)
ISSN 1804-7181 (On-line)
Full verze:
Submitted:12. 7. 2011
Accepted: 30. 8. 2011
Published online: 15. 12. 2011
Summary
Within literature there exists confusion about the health-related quality of life (HRQoL) concept. However, clarity in the meaning of HRQoL is critically important, because confusion hinders progress in research and applications in clinical practice. HRQoL is used as an umbrella term to cover a wide range of patient reported outcomes including measures of health status, living conditions or well-being. The paper reviews the literature and discusses the important issues regarding the conceptualisation of health related quality of life in health sciences. It provides a brief description of historical development; concepts/definitions and clinical application HRQoL in health care and research. The aim of this paper is to discuss controversies or contradictory issues that currently exist concerning HRQoL and its measurement. The author proposes that future debate around HRQoL should focus from HRQoL instruments/measures to issues in HRQoL conceptualisation.
Keywords: health related quality of life; quality of life; health; patient reported outcomes
Literatura
1. Beckie T, Hayduk LA (2004). Using perceived health to test the construct – related validity of global quality of life. Social Indicators Research. 65: 279–298.
2. Bradley C (2006). Feedback on the FDA’s February 2006 draft guidance on Patient Reported Outcome (PRO) measures from a developer of PRO measures. Quality of Life Research. 4(78): 1–8.
3. Bullinger M, Ravens-Sieberer U (1995). Stand der Forschung zur gesundheitsbezogenen Lebensqualität von Kindern. Eine Literaturanalyse [State of research of health-related quality of life in children. A review of the literature]. Präv Rehab. 7(3):106–121.
4. Cummins RA, Lau ALD (2006). Using health and subjective wellbeing for quality of life measurement – a review. Social Policy Review. 18: 165–192.
5. Fayers PM, Machin D (2000). Quality of Life: Assessment, Analysis, Interpretation. First edition. Chichester: John Wiley & Sons Ltd., p. 395.
6. Ferrans CE (2005). Definitions and conceptual models quality of life. In Lipscomb J, Gotay CC, Snyder C: Outcomes Assessment in Cancer. First edition. Cambridge: Cambridge University Press, pp. 14–30.
7. Ferrell B, Zichi Cohen M, Rhiner M, Rozek A (1991). Pain as a Metaphor for Illness. Part I: Family Caregivers’ Management of Pain. Oncology Nursing Forum. 18(8): 1315–1321.
8. Food and Drug Administration (2009). Guidance for Industry Patient-Reported Outcome Measures: Use in Medical Product Development to Support Labeling Claims. [online]. [cit. 2010–09–20]: Available at: http://www.fda.gov/…n/Guidances/ default.htm
9. Galloway S, Bell D, Hamilton CH, Scullion A (2005). Well-Being and Quality of Life: Measuring The Benefits of Culture And Sport: A Literature Review and Thinkpiece. First edition. Edinburgh: Scottish Executive Social Research, p. 157.
10. Garratt AM, Schmidt L, Fitzpatrick R (2002). Patient-assessed health outcome measures for diabetes: a structured review. Diabetes UK. Diabetes Medicine. 9: 1–11.
11. Gotay CC, Korn EL, McCabe MS, Moore TD, Cheson BD. (1992). Quality of life assessment in cancer treatment protocols: research issues in protocol development. Journal of the National Cancer Institute. 84(8): 575–579.
12. Grant MM, Dean GE (2003). The evolution of quality of life in oncology and oncology nursing. In King CR, Hinds PS: Quality of Life. From Nursing and Patient Perspective. Theory. Practice. Research. Second edition. Sudbury: Jones and Bartlett Publishers, 2003, pp. 3–28.
13. Guyatt G, Mitchell A, Irvine EJ, William N, Goodacre R, Tompkins CA (1989). New measure of health status for clinical trials in inflammatory bowel disease. Gastroenterology. 96(3): 804–810.
14. Haas BA (1999). Multidisciplinary Concept Analysis of Quality of Life. Western Journal of Nursing Research. 21(6): 728–742.
15. Hagerty MR, Cummins RA, Ferriss AL, Land K, Michalos AC, Peterson M, Sharpe A., Sirgy MJ, Vogel J (2001). Quality of Life Indexes for National Policy: Review and Agenda for Research. Social Indicators Research. 55(1): 1–96.
16. King CR (2003). Overview of Quality of Life and Controversial Issues. In King CR, Hinds PS: Quality of Life. From Nursing and Patient Perspective. Theory. Practice. Research. Second edition. Sudbury: Jones and Bartlett Publishers, pp. 29–42.
17. Omery AK, Dean H (2004). Multiple instruments for measuring quality of life. In Frank-Stromborg M, Olsen S: Instruments for Clinical Health-Care Research. Third ed. Sudbury: Jones and Bartlett Publishers, pp. 150–163.
18. Padilla GV, Grant MM (1985). Quality of life as a cancer nursing outcome variable. Advances in Nursing Science. 8(1): 45–60.
19. Padilla GV, Frank-Stromborg M (2004). Single instruments for measuring quality of life. In Frank- Stromborg M, Olsen S: Instruments for Clinical Health-Care Research. Third ed. Sudbury: Jones and Bartlett Publishers, pp. 128–149.
20. Sawatzky R (2007). The measurement of quality of life and its relationship with perceived health status in adolescents. University of British Columbia, Dissertation thesis, pp. 7–14 [online]. [cit. 2010– 09–20]. Available at: http://www.ricksawatzky.com/…Sawatzky.pdf
21. Schlarmann J, Metzing-Blau S, Schnepp W (2008). The use of health-related quality of life (HRQOL) in children and adolescents as an outcome criterion to evaluate family oriented support for young carers in Germany: an integrative review of the literature. BMC Public Health. 8: 414.
22. Singh H, Bradley C (2006). Quality of life in diabetes. International Journal of Diabetes in Developing Countries. 1: 7–10.
23. Smith KW, Avis NE, Assmann SF (1999). Distinguishing between quality of life and health status in quality of life research: A meta-analysis. Quality of Life Research. 8: 447–459.
24. Speight J, Shaw JA (2007). Does one size really fit all? Only by considering individual preferences and priorities will the true impact of insulin pump therapy on quality of life be determined. Diabetic Medicine. 24(7): 693–695.
25. Spilker B (1990). Introduction. In Spilker B et al.: Quality of life and pharmacoeconomics in clinical trials. Second edition. 1996, Philadelphia, PA: Lippincott-Raven Publishers, pp. 1–10.
26. Spilker B, Revicki BA (1996). Taxonomy of Quality of Life. In Spilker B et al.: Quality of life and pharmacoeconomics in clinical trials. Second edition. 1996, Philadelphia, PA: Lippincott-Raven Publishers, 1996, pp. 25–31.
27. Testa MA, Simonson, DC (1996). Assessment of Quality-of-Life Outcomes. The New England Journal of Medicine. 334(13): 835–840.
28. Vallerand AH, Payne JK (2003). Theories and Conceptual Models to Guide Quality of Life Related Research. In King CR, Hinds PS: Quality of Life. From Nursing and Patient Perspective. Theory. Practice. Research. Second edition. Sudbury: Jones and Bartlett Publishers, pp. 45–65.
29. Ware JE, Jr. (1984). Methodology in behavioral and psychosocial cancer research. Conceptualizing disease impact and treatment outcomes. Cancer. 15(53): 2316–2326.
30. Watkins KW, Connell CM (2004). Measurement of health-related quality of life in diabetes mellitus. Pharmacoeconomics. 22(17): 1109–1126.
31. WHOQOL GROUP (1995). The World Health Organization Quality of Life Assessment (WHOQOL): position paper from the World Health Organization. Social science and medicine. 4(10): 1403–1409.
32. Wilson IB, Cleary PD (1985). Linking Clinical Variables with Health-Related Quality of Life a Conceptual Model of Patient Outcomes. JAMA 273(1): 59–65.
33. World Health Organization (1948). Constitution of the World Health Organization. Geneva: WHO.
34. Zebrack B (2000). Cancer survivors and quality of life: a critical review of the literature. Oncol Nurs Forum. 27(9): 1395–1401.