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Content validity for dementia of three generic preference based health related quality of life instruments

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Abstract

A semi-structured interview was conducted with dementia patients and their caregivers in order to explore which aspects of quality of life were perceived as relevant and important. These aspects of quality of life were compared with the content of three generic utility-based quality of life instruments: European Quality of Life Instrument, Health Utilities Index, and Quality of Well-Being (QWB) Scale. Twenty patients with mild dementia and 20 caregiver volunteers provided narrative data derived from interviews that were analyzed using a modified Grounded Theory method of analysis. Essential attributes of dementia quality of life identified by the respondents were missing in the three utility-based quality of life instruments selected for the study. Patients provided a wider range of attributes than the instruments including some attributes not described by caregivers. Of the three utility-based measures, the QWB scale included the largest number of quality of life attributes but still missed many. Compared to the respondent generated attributes all three utility-based quality of life instruments have important shortcomings in content validity.

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References

  1. Gauthier S, Thal LJ, Rossor M. The future diagnosis and treatment of Alzheimer's Disease. In: Gauthier S (ed.), Clinical Diagnosis and Treatment of Alzheimer's disease, London: Martin Dunitz, 1996.

    Google Scholar 

  2. Evans DA, Funkelstein HH, Albert MS, et al. Prevalence of Alzheimer's disease in a community population of older persons: Higher than previously reported. JAMA 1989; 262: 2551–2556.

    Google Scholar 

  3. Evans DA. Estimated prevalence of Alzheimer's disease in the US. Milbank Q 1990; 68: 267–289.

    Google Scholar 

  4. DeJong R, Osterlund OW, Roy GW. Measurement of quality of-life changes in patients with Alzheimer's disease. Clin Ther 1989; 11(4): 545–554.

    Google Scholar 

  5. Grut M, Jorm AF, Fratiglioni L, Forsell Y, Viitanen M, Winblad B. Memory complaintsof elderly people in a population survey: Variation according to dementia stage and depression. J Am Geriatr Soc 1993; 41(12): 1295–1300.

    Google Scholar 

  6. David P. Effectiveness of group work with the cognitive impaired older adult. Am J Alzheimers Care and Relat Disord Res 1991; 10–16.

  7. Foley J. The experience of being demented. In: Binstock R, Post S, Whitehouse P (eds), Dementia and Aging, Baltimore: John Hopkins University Press, 1992.

    Google Scholar 

  8. Parse RR. Quality of life for persons living with Alzheimer's disease: The human becoming perspective. Nurs Sci Q 1996; 9(3): 126–133.

    Google Scholar 

  9. Burgener SC, Dickerson-Putman J. Assessing patients in the early stages of irreversible dementia. The relevance of patient perspectives. J Gerontol Nurs 1999; 25(2): 33–41.

    Google Scholar 

  10. Acton GJ, Mayhew PA, Hopkins BA, Yauk S. Communicating with individualswith dementia. The impaired person's perspective. J Gerontol Nurs 1999; 25(2): 6–13.

    Google Scholar 

  11. Selai C. Using the EuroQol EQ-5D in dementia. In: Proceedings of the EuroQol Plenary Meeting, Rabin RE, Busschbach J, De Charro F, Essink-Bot M (eds), Rotterdam: Erasmus University. Referenced in: Selai C, Trimble R. Assessing quality of life in dementia. Aging Mental Health 1998; 3(2): 108.

    Google Scholar 

  12. Neumann PJ, Kuntz KM, Leon J, Araki SS, Hermann RC, Hsu MA, Weinstein MC. Health utilities in Alzheimer's disease: A cross-sectional study of patients and caregivers. Med Care 1999; 37(1): 27–32.

    Google Scholar 

  13. Kerner DN, Patterson TL, Grant I, Kaplan RM. Validity of the Quality of Well-Being Scale for patientswith Alzheimer's disease. J Aging Health 1998; 10(1): 44–61.

    Google Scholar 

  14. Gold MR, Patrick DL, Torrance GW, Fryback DG, Hadorn DC, Kamlet MS, Daniels N, Weinstein MC. Identifying and valuing outcomes. In: Gold MR et al. (eds), Cost-Effectiveness in Health and Medicine, New York: Oxford University Press, 1996, pp. 109–110.

    Google Scholar 

  15. Krahn M, Mahoney J, Trachtenberg J, Eckman M, Pauker S, Detsky AS. Screening for Prostate Cancer: A Decison Analytic View. JAMA 1994; 272: 773–780.

    Google Scholar 

  16. Bennett KJ, Torrance GW, Goldsmith CH, Tugwell P. Methodologic challengesin the development of utility measures of health related quality of life in rheumatoid arthritis. Control Clin Trials 1991; 12(suppl): 118s-128s.

    Google Scholar 

  17. Bennett JK, Torrance GW, Moran LA, Smith F, Goldsmith CH. Health State Utilities in Knee Replacement Surgery: The development and validation of McKnee. J Rheumatol 1997; 24: 1796–1805.

    Google Scholar 

  18. Krahn M, Ritvo P, Irvine J, et al. Construction of the Patient-Oriented Prostate Utility Scale (PORPUS): A multi-attribute health state classification system for prostate cancer. J Clin Epidemiol 2000; 53: 920–930.

    Google Scholar 

  19. Hodder SC, Edwards MJ, Brickley MR, Shepherd JP. Multiattribute utility assessment of outcomes of treatment for head and neck cancer. Br J Can 1997; 75: 898–902.

    Google Scholar 

  20. Bennett KJ, Torrance GW, Boyle BH, Guscott R, Moran LA. Development and testing of a utility measure for major, unipolar depression (McSad). Qual Life Res 2000; 9(1): 109–120.

    Google Scholar 

  21. Revicki DA, Leidy NK, Brennan-Diemer F, Thompson C, Togias A. Development and preliminary validation of the multiattribute RhinitisSymptom Utility Index. Qual Life Res 1998; 78(8): 693–702.

    Google Scholar 

  22. Froberg DG, Kane RL. Methodology for measuring health-state preferences-II: Scaling methods. J Clin Epidemiol 1989; 42(5): 459–471.

    Google Scholar 

  23. Glaser B, Strauss A. The Discovery of Grounded Theory: Strategiesfor qualitative research. Chicago: Aldine, 1967.

    Google Scholar 

  24. Lincoln Y, Guba E. Naturalistic Inquiry. Newbury Park California: Sage, 1995. Publications.

    Google Scholar 

  25. Logsdon RG, Gibbons LE, McCurry SM, Teri L. Quality of life in Alzheimer's disease: Patient and caregiver reports. J Mental Health Aging 1999; 5: 21–32.

    Google Scholar 

  26. Brod M, Stewart AL, Sands L, Walton P. Conceptualization and measurement of quality of life in dementia: The dementia quality of life instrument (DQoL). The Gerontologist 1999; 39(1): 25–35.

    Google Scholar 

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Correspondence to Michel Silberfeld.

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Silberfeld, M., Rueda, S., Krahn, M. et al. Content validity for dementia of three generic preference based health related quality of life instruments. Qual Life Res 11, 71–79 (2002). https://doi.org/10.1023/A:1014406429385

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  • DOI: https://doi.org/10.1023/A:1014406429385

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