Skip to main content
SpringerLink
Log in

Agreement between patients' and proxies' reports of quality of lifein Alzheimer's disease

  • Published:
Quality of Life Research Aims and scope Submit manuscript

Abstract

Agreement between self reports and proxy reports of health-related quality of life (HRQoL) was examined in a sample of 76 patients with mild to moderate Alzheimer's disease and their proxies. Patients and proxies completed an (17-item Duke health profile). The items were rephrased for the proxy. The proportion of exact agreement between patients and proxies on the 17 items ranged from 26.3 to 52.6%. Results reveal poor to moderate agreement (intraclass correlation coefficients (ICCs) from 0.00 to 0.61 for 10 subscales) between patients' and proxies' reports. Agreement was higher for measures of function that are directly observable (physical health, disability) and relatively poor for more subjective measures. Proxy reliability varied according to the relationship of the proxy to the index subject. Spouses and nurses agreed more closely with index subjects than did children or nurses' aides. Agreement decreased with increasing severity of dementia. Statistically significant differences in mean scores were noted for several dimensions, with proxies tending to rate the patients as having a lower quality of life than the patients themselves. This study indicates the importance of considering the information source of a patient's HRQoL. However, assessments by proxies should be used with caution.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Log in via an institution

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Institutional subscriptions

Similar content being viewed by others

References

  1. Armstrong-Esther CA, Brown KD, McAfee JG. Elderly patients: Still clean and sitting quietly. J Advan Nurs 1994; 19(2): 264–271.

    Article  Google Scholar 

  2. Blanchard F, Bocquet P, Goncalves S, et al. Les soins relationnels améliorent-ils la qualité de vie des déments? Gérontologie et Société. 1995; 72: 156–166.

    Google Scholar 

  3. Aaronson NK. Methodologic issues in assessing the quality of life of cancer patients. Cancer 1991; 67(Suppl. 3): 844–850.

    Article  PubMed  CAS  Google Scholar 

  4. Donovan K, Sanson-Fisher RW, Redman S. Measuring quality of life in cancer patients. J Clin Oncol 1989; 7(7): 959–968.

    PubMed  CAS  Google Scholar 

  5. Sneeuw KC, Aaronson NK, Osoba D, et al. The use of significant others as proxy raters of the quality of life of patients with brain cancer. Med Care 1997; 35(5): 490–506.

    Article  PubMed  CAS  Google Scholar 

  6. Elam JT, Graney MJ, Beaver T, el Derwi D, Applegate WB, Miller ST. Comparison of subjective ratings of function with observed functional ability of frail older persons. Am J Public Health 1991; 81(9): 1127–1130.

    Article  PubMed  CAS  Google Scholar 

  7. De Haan R, Aaronson N, Limburg M, Hewer RL, van Crevel H. Measuring quality of life in stroke. Stroke 1993; 24(2): 320–327.

    PubMed  CAS  Google Scholar 

  8. Nelson LM, Longstreth WTJ, Koepsell TD, van Belle G. Proxy respondents in epidemiologic research. Epidemiol Rev 1990; 12: 71–86.

    PubMed  CAS  Google Scholar 

  9. Burgio L, Leon J. Using patient and proxy reports as outcome measures in Alzheimer disease research. Alzheimer Dis Assoc Disord 1997; 11(Suppl. 6): 179–180.

    PubMed  Google Scholar 

  10. Ostbye T, Tyas S, McDowell I, Koval J. Reported activities of daily living: Agreement between elderly subjects with and without dementia and their caregivers. Age Ageing 1997; 26(2): 99–106.

    PubMed  CAS  Google Scholar 

  11. Moinpour CM, Lyons B, Schmidt SP, Chansky K, Patchell RA. Substituting proxy ratings for patient ratings in cancer clinical trials: An analysis based on a Southwest Oncology Group trial in patients with brain metastases. Qual Life Res 2000; 9(2): 219–231.

    Article  PubMed  CAS  Google Scholar 

  12. Pierre U, Wood-Dauphinee S, Korner-Bitensky N, Gayton D, Hanley J. Proxy use of the Canadian SF-36 in rating health status of the disabled elderly. J Clin Epidemiol 1998; 51(11): 983–990.

    Article  PubMed  CAS  Google Scholar 

  13. Magaziner J, Simonsick EM, Kashner TM, Hebel JR. Patient-proxy response comparability on measures of patient health and functional status. J Clin Epidemiol 1988; 41(11): 1065–1074.

    Article  PubMed  CAS  Google Scholar 

  14. High DM, Doole MM. Ethical and legal issues in conducting research involving elderly subjects. Behav Sci Law 1995; 13(3): 319–335.

    PubMed  CAS  Google Scholar 

  15. Farrow DC, Samet JM. Comparability of information provided by elderly cancer patients and surrogates regarding health and functional status, social network, and life events. Epidemiology 1990; 1(5): 370–376.

    PubMed  CAS  Google Scholar 

  16. Bassett SS, Magaziner J, Hebel JR. Reliability of proxy response on mental health indices for aged, community-dwelling women. Psychol Aging 1990; 5(1): 127–132.

    Article  PubMed  CAS  Google Scholar 

  17. Epstein AM, Hall JA, Tognetti J, Son LH, Conant LJ. Using proxies to evaluate quality of life. Can they provide valid information about patients' health status and satisfaction with medical care? Med Care 1989; 27(Suppl. 3): S91–S98.

    PubMed  CAS  Google Scholar 

  18. McCusker J, Stoddard AM. Use of a surrogate for the Sickness Impact Profile. Med Care 1984; 22(9): 789–795.

    PubMed  CAS  Google Scholar 

  19. Hays RD, Vickrey BG, Hermann BP, et al. Agreement between self reports and proxy reports of quality of life in epilepsy patients. Qual Life Res 1995; 4(2): 159–168.

    Article  PubMed  CAS  Google Scholar 

  20. Sprangers MA, Aaronson NK. The role of health care providers and significant others in evaluating the quality of life of patients with chronic disease: A review. J Clin Epidemiol 1992; 45(7): 743–760.

    Article  PubMed  CAS  Google Scholar 

  21. Justice AC, Rabeneck L, Hays RD, Wu AW, Bozzette SA. Sensitivity, specificity, reliability, and clinical validity of provider-reported symptoms: A comparison with self-reported symptoms. Outcomes Committee of the AIDS Clinical Trials Group. J Acquir Immune Defic Syndr 1999; 21(2): 126–133.

    PubMed  CAS  Google Scholar 

  22. Sneeuw KC, Aaronson NK, de Haan RJ, Limburg M. Assessing quality of life after stroke. The value and limitations of proxy ratings. Stroke 1997; 28(8): 1541–1549.

    PubMed  CAS  Google Scholar 

  23. Parkerson GR, Broadhead WE, Tse CJ. The Duke Health Profile: A 17–item measure of health and dysfunction. Medical Care 1990; 28(11): 1056–1072.

    PubMed  Google Scholar 

  24. Guillemin F, Paul-Dauphin A, Virion J, Bouchet C, Briançon S. Le profil de Santé de Duke: un instrument générique de mesure de qualité de vie liée à la santé. Santé Publique 1997; 9(1): 35–44.

    PubMed  CAS  Google Scholar 

  25. Folstein M, Folstein S, Mc HP. “Mini mental state” a practical method for grading the cognitive state of patients for the clinician. J Psychiat Res 1975; 12: 189–198.

    Article  PubMed  CAS  Google Scholar 

  26. Novella JL, Jolly D, Ankri J, et al. Analyse préliminaire des propriétés psychométriques du profil de santé de Duke sur un échantillon de 148 sujets atteints de démence. L'Année Gérontologique 1999; 144–155.

  27. Novella JL, Ankri J, Morrone I, et al. Evaluation of the quality of life in dementia with a generic quality of life questionnaire: The Duke health profile. Dement Geriatr Cogn Disord 2001; 12(2): 158–166.

    Article  PubMed  CAS  Google Scholar 

  28. Hughes C, Berg L, Danziger W, Coben L, Martin R. A new clinical scale for the staging of dementia. Br J Psychiatry 1982; 14: 566–572.

    Google Scholar 

  29. Katz S, Down T, Cash H, Grotz R. Progress in development of index of ADL. Gerontologist 1970; 10: 20–30.

    PubMed  CAS  Google Scholar 

  30. Cronbach L. Coefficient alpha and the internal structure of tests. Psychometrika 1951; 16(3): 297–334.

    Article  Google Scholar 

  31. Bravo G, Potvin L. Estimating the reliability of continuous measures with Cronbach's alpha or the intraclass correlation coefficient: Toward the integration of two traditions. J Clin Epidemiol 1991; 44(4–5): 381–390.

    Article  PubMed  CAS  Google Scholar 

  32. Deyo RA, Diehr P, Patrick DL. Reproducibility and responsiveness of health status measures. Statistics and strategies for evaluation. Control Clin Trials 1991; 12(Suppl. 4): 142S–158S.

    PubMed  CAS  Google Scholar 

  33. Schrout P, Fleiss J. Intraclass correlations: Uses in assessing rater reliability. Psychological Bulletin 1979; 86(2): 420–428.

    Article  Google Scholar 

  34. Nunnally JC. Psychometric Theory. 2nd ed. New York: McGraw-Hill 1978.

    Google Scholar 

  35. Fleiss J. The design and Analysis of Clinical Experiments. New York: John Wiley and Sons, 1986.

    Google Scholar 

  36. Lee J, Koh D, Ong CN. Statistical evaluation of agreement between two methods for measuring a quantitative variable. Comput Biol Med 1989; 19(1): 61–70.

    Article  PubMed  CAS  Google Scholar 

  37. Sloan JA, Loprinzi CL, Kuross SA, et al. Randomized comparison of four tools measuring overall quality of life in patients with advanced cancer. J Clin Oncol 1998; 16(11): 3662–3673.

    PubMed  CAS  Google Scholar 

  38. Cohen J. Statistical Power Analysis for the Behaviour Sciences. Hillsdale, NJ: Lawrence Erlbaum Associates, 1988.

    Google Scholar 

  39. Rubenstein LZ, Schairer C, Wieland GD, Kane R. Systematic biases in functional status assessment of elderly adults: Effects of different data sources. J Gerontol 1984; 39(6): 686–691.

    PubMed  CAS  Google Scholar 

  40. Rothman ML, Hedrick SC, Bulcroft KA, Hickam DH, Rubenstein LZ. The validity of proxy-generated scores as measures of patient health status. Med Care 1991; 29(2): 115–124.

    PubMed  CAS  Google Scholar 

  41. Zanetti O, Geroldi C, Frisoni GB, Bianchetti A, Trabucchi M. Contrasting results between caregiver's report and direct assessment of activities of daily living in patients affected by mild and very mild dementia: the contribution of the caregiver's personal characteristics. J Am Geriatr Soc 1999; 47(2): 196–202.

    PubMed  CAS  Google Scholar 

  42. Long K, Sudha S, Mutran EJ. Elder-proxy agreement concerning the functional status and medical history of the older person: The impact of caregiver burden and depressive symptomatology. J Am Geriatr Soc 1998; 46(9): 1103–1111.

    PubMed  CAS  Google Scholar 

  43. Pruchno RA, Burant CJ, Peters ND. Typologies of caregiving families: Family congruence and individual well-being. Gerontologist 1997; 37(2): 157–167.

    PubMed  CAS  Google Scholar 

  44. Teri L, Wagner AW. Assessment of depression in patients with Alzheimer's disease: Concordance among informants. Psychol Aging 1991; 6(2): 280–285.

    Article  PubMed  CAS  Google Scholar 

  45. Kiyak HA, Teri L, Borson S. Physical and functional health assessment in normal aging and in Alzheimer's disease: Self-reports vs. family reports [see comments]. Gerontologist 1994; 34(3): 324–330.

    PubMed  CAS  Google Scholar 

  46. Weinberger M, Oddone EZ, Samsa GP, Landsman PB. Are health-related quality-of-life measures affected by the mode of administration? J Clin Epidemiol 1996; 49(2): 135–140.

    Article  PubMed  CAS  Google Scholar 

  47. Cook D, Guyatt G, Juniper E, et al. Interviewer versus self-administered questionnaires in developing a disease-specific, health-related quality of life instrument for asthma. J Clin Epidemiol 1993; 36(6): 529–534.

    Article  Google Scholar 

Download references

Author information

Authors and Affiliations

  1. Department of Internal Medicine and Gerontology, Hôpital Sébastopol, France

    J.L. Novella, C. Jochum & F. Blanchard

  2. Department of Medical Information, Hôpital Maison Blanche, France

    D. Jolly & F. Bureau

  3. Department of reeducation, Hôpital Sébastopol, Reims, France

    I. Morrone

  4. Hôpital Sainte Perine, 49 rue Mirabeau, Paris, France

    J. Ankri

Authors
  1. J.L. Novella
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. C. Jochum
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. D. Jolly
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. I. Morrone
    View author publications

    You can also search for this author in PubMed Google Scholar

  5. J. Ankri
    View author publications

    You can also search for this author in PubMed Google Scholar

  6. F. Bureau
    View author publications

    You can also search for this author in PubMed Google Scholar

  7. F. Blanchard
    View author publications

    You can also search for this author in PubMed Google Scholar

Rights and permissions

Reprints and permissions

About this article

Cite this article

Novella, J., Jochum, C., Jolly, D. et al. Agreement between patients' and proxies' reports of quality of lifein Alzheimer's disease. Qual Life Res 10, 443–452 (2001). https://doi.org/10.1023/A:1012522013817

Download citation

  • Issue Date:

  • DOI: https://doi.org/10.1023/A:1012522013817

Search

Navigation