Quality of Life Research

, Volume 15, Issue 4, pp 631–643 | Cite as

Utility-based Quality of Life Measures in Alzheimer’s Disease

  • Gary Naglie
  • George Tomlinson
  • Catherine Tansey
  • Jane Irvine
  • Paul Ritvo
  • Sandra E. Black
  • Morris Freedman
  • Michel Silberfeld
  • Murray Krahn


Objectives: To explore whether Alzheimer’s disease patients could rate their quality of life (QOL) using utility-based health indexes, and to provide new knowledge about the measurement properties of these instruments for patient and caregiver proxy ratings. Methods: A convenience sample of 60 mild-moderate AD patients and their caregivers were randomized to complete the Quality of Well-Being Scale (QWB), Health Utilities Index (HUI3) or EQ-5D and visual analogue scale (VAS) on two occasions. Test–retest reliability (intraclass correlation coefficients) and convergent validity (Spearman correlations) of utility scores with global health status, activities of daily living, comorbidity, mood, cognition and other utility measures were assessed. Results: Completion time was shortest for the combined EQ-5D and VAS. For patients with mild dementia and for proxies, reliability was ≥ 0.70 for the EQ-5D, QWB and HUI3. The EQ-5D had a ceiling effect for patient ratings. Convergent validity was demonstrated for patient and proxy ratings, with the strongest validity for EQ-5D ratings and the weakest validity for HUI3 patient ratings. Mean patient utility scores were significantly higher than mean proxy scores for all measures (p<0.001). Conclusions: For patient and proxy ratings, the EQ-5D had the best combination of measurement properties, although it had a substantial ceiling effect for patient ratings. Proxy QOL ratings did not accurately reflect patients’ ratings.


Alzheimers Dementia Quality of life Utility measurement 


Unable to display preview. Download preview PDF.

Unable to display preview. Download preview PDF.


  1. 1.
    Neumann, PJ, Hermann, RC, Kuntz, KM,  et al. 1999Cost-effectiveness of donepezil in the treatment of mild or moderate Alzheimer’s diseaseNeurology521138114PubMedGoogle Scholar
  2. 2.
    Bryant, J, Clegg, A, Nicholson, T,  et al. 2001Clinical and cost-effectiveness of donepezil, rivastigmine and galantamine for Alzheimer’s disease: A rapid and systematic reviewHealth Technol Assess51137PubMedGoogle Scholar
  3. 3.
    Selai, CT, Trimble, MR 1999Assessing quality of life in dementiaAging & Mental Health3101111CrossRefGoogle Scholar
  4. 4.
    Mador, J, Clark, M, Crotty, M,  et al. 2002Utility-weighted measures of quality of life in Alzheimer diseaseAlzheimer Dis Assoc Disord16202203CrossRefPubMedGoogle Scholar
  5. 5.
    Selai, C 2001Assessing quality of life in dementiaMed Care39753755CrossRefPubMedGoogle Scholar
  6. 6.
    Sprangers, MA, Aaronson, NK 1992The role of health care providers and significant others in evaluating the quality of life of patients with chronic disease: A reviewJ Clin Epidemiol45743760CrossRefPubMedGoogle Scholar
  7. 7.
    Logsdon, RG, Gibbons, LE, McCurry, SM, Teri, L 2002Assessing quality of life in older adults with cognitive impairmentPsychosom Med64510519PubMedGoogle Scholar
  8. 8.
    Sanifort, F, Becker, M, Diamond, R 1996Judgements of quality of life of individuals with severe mental disorders: Patient self-report versus provider perspectiveAm J Psychiatry153497502Google Scholar
  9. 9.
    Neumann, PJ, Sandberg, EA, Araki, SS,  et al. 2000A comparison of HUI2 and HUI3 utility scores in Alzheimer’s diseaseMed Decis Making20413422PubMedGoogle Scholar
  10. 10.
    Silberfeld, M, Rueda, S, Krahn, M,  et al. 2002Content validity for dementia of three generic preference based health related quality of life instrumentsQual Life Res117179CrossRefPubMedGoogle Scholar
  11. 11.
    Neumann, PJ, Kuntz, KM, Leon, J,  et al. 1999Health utilities in Alzheimer’s disease: A cross-sectional study of patients and caregiversMed Care372732CrossRefPubMedGoogle Scholar
  12. 12.
    Kerner, DN, Patterson, TL, Grant, I,  et al. 1998Validity of the Quality of Well-Being Scale for patients with Alzheimer’s diseaseJ Aging Health104461PubMedGoogle Scholar
  13. 13.
    Coucill, W, Bryan, S, Bentham, P,  et al. 2001EQ-5D in patients with dementia: an investigation of inter-rater agreementMed Care39760771CrossRefPubMedGoogle Scholar
  14. 14.
    Ankri, J, Beaufils, B, Novella, J-L,  et al. 2003Use of the EQ-5D among patients suffering from dementiaJ Clin Epidemiol5610551063CrossRefPubMedGoogle Scholar
  15. 15.
    Thorgrimsen, L, Selwood, A, Spector, A,  et al. 2003Whose quality of life is it anyway? The validity and reliability of the Quality of Life-Alzheimer’s Disease (QOL-AD) scaleAlzheimer Dis Assoc Disord17201208CrossRefPubMedGoogle Scholar
  16. 16.
    Selai, CE, Trimble, MR, Rosser, NR,  et al. 2000The Quality of Life Assessment Schedule (QOLAS) – A New Method for Assessing Quality of Life (QOL) in DementiaLogsdon, R eds. Assessing Quality of Life in Alzheimer’s DiseaseSpringer PublishingNew York3148Google Scholar
  17. 17.
    Furlong, WJ, Feeny, DH, Torrance, GW,  et al. 2001The Health Utilities Index (HUI3) system for assessing health-related quality of life in clinical studiesAnn Med33375383PubMedGoogle Scholar
  18. 18.
    Kaplan, RM 1993Application of a general health policy model in the American health care crisisJ R Soc Med86277281PubMedGoogle Scholar
  19. 19.
    Brazier, J, Jones, N, Kind, P 1993Testing the validity of the Euroqol and comparing it with the SF-36 health survey questionnaireQual Life Res2169180CrossRefPubMedGoogle Scholar
  20. 20.
    American Psychiatric Association1994Diagnostic and Statistical Manual of Mental Disorders (DSM-IV)4American Psychiatric PressWashingtonGoogle Scholar
  21. 21.
    Folstein, MF, Folstein, SE, McHugh, PR 1975“Mini-mental state”. A practical method for grading the cognitive state of patients for the clinicianJ Psychiatric Res12189198CrossRefGoogle Scholar
  22. 22.
    Katz, S, Ford, A, Moskowitz, R,  et al. 1963Studies of illness in the aged. The index of ADL: A standardized measure of biological and psychosocial functionJAMA1859499Google Scholar
  23. 23.
    Lawton, MP, Brody, EM 1969Assessment of older people: Self-maintaining and instrumental activities of daily livingGerontologist9179186PubMedGoogle Scholar
  24. 24.
    Ware, JE,Jr., Sherbourne, CD 1992The MOS 36-item short-form health survey (SF-36). I. Conceptual framework and item selectionMed Care30473483PubMedGoogle Scholar
  25. 25.
    Burke, WJ, Nitcher, RL, Roccaforte, WH,  et al. 1992A prospective evaluation of the Geriatric Depression Scale in an outpatient geriatric assessment centerJ Am Geriatr Soc4012271230PubMedGoogle Scholar
  26. 26.
    Yesavage, JA, Brink, TL, Rose, TL,  et al. 1982Development and validation of a geriatric depression screening scale: A preliminary reportJ Psychiatric Res173749CrossRefGoogle Scholar
  27. 27.
    Hagell, P, Whalley, D, McKenna, SP, Lindvall, O 2003Health status measurement in Parkinson’s disease: Validity of the PDQ-39 and Nottingham Health ProfileMov Disord18773783CrossRefPubMedGoogle Scholar
  28. 28.
    Unal, G, Boer, JB, Borsboom, GJJM,  et al. 2001A psychometric comparison of health-related quality of life measures in chronic liver diseaseJ Clin Epidemiol54587596CrossRefPubMedGoogle Scholar
  29. 29.
    Jansen, AJG, Essink-Bot, M-L, Beckers, EAM,  et al. 2003Quality of life measurement in patients with transfusion-dependent myelodysplastic syndromesBr J Haematol121270274CrossRefPubMedGoogle Scholar
  30. 30.
    Polit, D, Hungler, B 1983Nursing Research: Principles and Methods Chapter 18: Reliability, Validity and Other Criteria for Assessing Measuring Tools2LippincottPhiladelphia382408Google Scholar
  31. 31.
    Nunnally, JC eds. 1978Psychometric Theory (second edition). Chapter Seven: Assessment of Reliability2McGraw-Hill Book CompanyNew YorkGoogle Scholar
  32. 32.
    Ready, RE, Ott, BR 2003Quality of life measures for dementiaHealth Qual Life Outcomes11119CrossRefPubMedGoogle Scholar
  33. 33.
    Burnand, B, Kernan, WN, Feinstein, AR 1990Indexes and boundaries for “quantitative significance” in statistical decisionsJ Clin Epidemiol4312731284CrossRefPubMedGoogle Scholar
  34. 34.
    Rosner, B 1995Fundamentals of BiostatisticsDuxbury PressBelmont California299–344 and 443–550Google Scholar
  35. 35.
    Conover, WJ 1980Practical Non-Parametric Statistics2John Wiley and SonsNew YorkGoogle Scholar
  36. 36.
    Cleveland, W 1994The Elements of Graphing DataHobart PressNew JerseyGoogle Scholar
  37. 37.
    S-Plus 6.2 for Windows. Seattle WA: 1988–2003 Insightful Corp.Google Scholar
  38. 38.
    Gold, MR, Patrick, DL, Torrance, GW,  et al. 1996Identifying and valuing outcomesWeinstein, MC eds. Cost-effectiveness in Health and MedicineOxford University PressNew York82134Google Scholar
  39. 39.
    Mozley, CG, Huxley, P, Sutcliffe, C,  et al. 1999‘Not knowing where I am doesn’t mean I don’t know what I like’: Cognitive impairment and quality of life responses in elderly peopleInt J Geriatr Psychiatry14776783CrossRefPubMedGoogle Scholar
  40. 40.
    Logsdon, RG, Gibbons, LE, McCurry, SM, Teri, L 1999Quality of life in Alzheimer’s Disease: Patient and caregiver reportsJ Mental Health & Aging52132Google Scholar
  41. 41.
    Brod, M, Stewart, AL, Sands, L,  et al. 1999Conceptualization and measurement of quality of life in dementia: The dementia quality of life instrument (DQoL)Gerontologist392535CrossRefPubMedGoogle Scholar
  42. 42.
    Mittmann, N, Trakas, K, Risebrough, N,  et al. 1999Utility scores for chronic conditions in a community-dwelling populationPharmacoeconomics15369376CrossRefPubMedGoogle Scholar
  43. 43.
    Sands, LP, Ferreira, P, Stewart, AL,  et al. 2004What explains differences between dementia patients’ and their caregivers’ ratings of patients’ quality of life?Am J Geriatr Psychiatry12272280CrossRefPubMedGoogle Scholar
  44. 44.
    Edelman, P, Fulton, BR, Kuhn, D 2004Comparison of dementia-specific quality of life measures in adult day centresHome Health Care Services Quarterly232542CrossRefPubMedGoogle Scholar
  45. 45.
    Novella, JL, Jochum, C, Jolly, D,  et al. 2001Agreement between patients’ and proxies’ reports of quality of life in Alzheimer’s diseaseQuality of Life Research10443452CrossRefPubMedGoogle Scholar
  46. 46.
    Boyer, F, Novella, JL, Morrone, I,  et al. 2004Agreement between dementia patient report and proxy reports using the Nottingham Health ProfileInt J Geriatr Psychiatry1910261034CrossRefPubMedGoogle Scholar
  47. 47.
    Coons, SJ, Rao, S, Keininger, DL,  et al. 2000A comparative review of generic quality-of-life instrumentsPharmacoeconomics171335CrossRefPubMedGoogle Scholar

Copyright information

© Springer 2006

Authors and Affiliations

  • Gary Naglie
    • 1
    • 2
    • 3
    • 4
    • 5
  • George Tomlinson
    • 3
    • 6
    • 7
  • Catherine Tansey
    • 6
    • 9
  • Jane Irvine
    • 8
    • 16
  • Paul Ritvo
    • 8
    • 13
    • 14
  • Sandra E. Black
    • 4
    • 10
  • Morris Freedman
    • 4
    • 11
    • 12
    • 15
  • Michel Silberfeld
    • 16
  • Murray Krahn
    • 1
    • 3
    • 4
    • 5
  1. 1.Division of General Internal Medicine and Clinical EpidemiologyUniversity Health NetworkTorontoCanada
  2. 2.Geriatrics ProgramToronto Rehabilitation InstituteTorontoCanada
  3. 3.Clinical Epidemiology and Health Care Research ProgramUniversity of TorontoTorontoCanada
  4. 4.Department of MedicineUniversity of TorontoTorontoCanada
  5. 5.Department of Health Policy, Management and EvaluationUniversity of TorontoTorontoCanada
  6. 6.Department of MedicineUniversity Health NetworkTorontoCanada
  7. 7.Department of Public Health SciencesUniversity of TorontoTorontoCanada
  8. 8.Department of PsychologyYork UniversityTorontoCanada
  9. 9.Institute of Medical ScienceUniversity of TorontoTorontoCanada
  10. 10.Division of NeurologySunnybrook and Women’s College Health Sciences CentreTorontoCanada
  11. 11.Division of NeurologyMount Sinai HospitalTorontoCanada
  12. 12.Behavioural Neurology Program and Rotman Research InstituteBaycrest Centre for Geriatric CareTorontoCanada
  13. 13.Cancer Care OntarioTorontoCanada
  14. 14.Ontario Cancer InstituteTorontoCanada
  15. 15.Division of NeurologyUniversity Health NetworkTorontoCanada
  16. 16.Department of PsychiatryUniversity of TorontoTorontoCanada

Personalised recommendations