Quality of Life Research

, Volume 10, Issue 5, pp 443–452 | Cite as

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

  • J.L. Novella
  • C. Jochum
  • D. Jolly
  • I. Morrone
  • J. Ankri
  • F. Bureau
  • F. Blanchard
Article

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.

Agreement Alzheimer's disease Duke health profile Proxy Quality of life 

Preview

Unable to display preview. Download preview PDF.

Unable to display preview. Download preview PDF.

References

  1. 1.
    Armstrong-Esther CA, Brown KD, McAfee JG. Elderly patients: Still clean and sitting quietly. J Advan Nurs 1994; 19(2): 264–271.CrossRefGoogle Scholar
  2. 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. 3.
    Aaronson NK. Methodologic issues in assessing the quality of life of cancer patients. Cancer 1991; 67(Suppl. 3): 844–850.PubMedCrossRefGoogle Scholar
  4. 4.
    Donovan K, Sanson-Fisher RW, Redman S. Measuring quality of life in cancer patients. J Clin Oncol 1989; 7(7): 959–968.PubMedGoogle Scholar
  5. 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.PubMedCrossRefGoogle Scholar
  6. 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.PubMedCrossRefGoogle Scholar
  7. 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.PubMedGoogle Scholar
  8. 8.
    Nelson LM, Longstreth WTJ, Koepsell TD, van Belle G. Proxy respondents in epidemiologic research. Epidemiol Rev 1990; 12: 71–86.PubMedGoogle Scholar
  9. 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.PubMedGoogle Scholar
  10. 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.PubMedGoogle Scholar
  11. 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.PubMedCrossRefGoogle Scholar
  12. 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.PubMedCrossRefGoogle Scholar
  13. 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.PubMedCrossRefGoogle Scholar
  14. 14.
    High DM, Doole MM. Ethical and legal issues in conducting research involving elderly subjects. Behav Sci Law 1995; 13(3): 319–335.PubMedGoogle Scholar
  15. 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.PubMedGoogle Scholar
  16. 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.PubMedCrossRefGoogle Scholar
  17. 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.PubMedGoogle Scholar
  18. 18.
    McCusker J, Stoddard AM. Use of a surrogate for the Sickness Impact Profile. Med Care 1984; 22(9): 789–795.PubMedGoogle Scholar
  19. 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.PubMedCrossRefGoogle Scholar
  20. 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.PubMedCrossRefGoogle Scholar
  21. 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.PubMedGoogle Scholar
  22. 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.PubMedGoogle Scholar
  23. 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.PubMedGoogle Scholar
  24. 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.PubMedGoogle Scholar
  25. 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.PubMedCrossRefGoogle Scholar
  26. 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.Google Scholar
  27. 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.PubMedCrossRefGoogle Scholar
  28. 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. 29.
    Katz S, Down T, Cash H, Grotz R. Progress in development of index of ADL. Gerontologist 1970; 10: 20–30.PubMedGoogle Scholar
  30. 30.
    Cronbach L. Coefficient alpha and the internal structure of tests. Psychometrika 1951; 16(3): 297–334.CrossRefGoogle Scholar
  31. 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.PubMedCrossRefGoogle Scholar
  32. 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.PubMedGoogle Scholar
  33. 33.
    Schrout P, Fleiss J. Intraclass correlations: Uses in assessing rater reliability. Psychological Bulletin 1979; 86(2): 420–428.CrossRefGoogle Scholar
  34. 34.
    Nunnally JC. Psychometric Theory. 2nd ed. New York: McGraw-Hill 1978.Google Scholar
  35. 35.
    Fleiss J. The design and Analysis of Clinical Experiments. New York: John Wiley and Sons, 1986.Google Scholar
  36. 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.PubMedCrossRefGoogle Scholar
  37. 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.PubMedGoogle Scholar
  38. 38.
    Cohen J. Statistical Power Analysis for the Behaviour Sciences. Hillsdale, NJ: Lawrence Erlbaum Associates, 1988.Google Scholar
  39. 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.PubMedGoogle Scholar
  40. 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.PubMedGoogle Scholar
  41. 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.PubMedGoogle Scholar
  42. 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.PubMedGoogle Scholar
  43. 43.
    Pruchno RA, Burant CJ, Peters ND. Typologies of caregiving families: Family congruence and individual well-being. Gerontologist 1997; 37(2): 157–167.PubMedGoogle Scholar
  44. 44.
    Teri L, Wagner AW. Assessment of depression in patients with Alzheimer's disease: Concordance among informants. Psychol Aging 1991; 6(2): 280–285.PubMedCrossRefGoogle Scholar
  45. 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.PubMedGoogle Scholar
  46. 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.PubMedCrossRefGoogle Scholar
  47. 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.CrossRefGoogle Scholar

Copyright information

© Kluwer Academic Publishers 2001

Authors and Affiliations

  • J.L. Novella
    • 1
  • C. Jochum
    • 1
  • D. Jolly
    • 2
  • I. Morrone
    • 3
  • J. Ankri
    • 4
  • F. Bureau
    • 2
  • F. Blanchard
    • 1
  1. 1.Department of Internal Medicine and GerontologyHôpital SébastopolFrance
  2. 2.Department of Medical InformationHôpital Maison BlancheFrance
  3. 3.Department of reeducationHôpital SébastopolReimsFrance
  4. 4.Hôpital Sainte PerineParisFrance

Personalised recommendations