Abstract
Objective: The purpose of the present study was to examine the level of agreement between health status ratings provided by patients with Alzheimer’s disease and by their proxies. Background: Because proxy-completed responses are often necessary in assessing health outcomes for the elderly, it is necessary to determine the feasibility and potential limitations of using proxies as a patient substitutes. Methods: To assess the potential utility of proxy responses on health status when subjects present a cognitive impairment, this study compared the responses of 70 subjects with Alzheimer‘s disease and those of their family and/or care provider proxy using the SF-36. Agreement between proxies and patients was measured by intraclass correlation coefficients (ICCs). Results: The proportion of exact agreement between patients and proxies on the 36 items ranged from 3.3 to 41.7%. Results reveal poor to moderate agreement between patient and proxy reports. Proxy reliability varied according to the relationship of the proxy to the index subject. Agreement decreased significantly with increasing severity of dementia and with increasing severity of Physical status (Katz ADL). Agreement was better for measures of functions that are directly observable and relatively poor for more subjective measures. Conclusions: Our results confirm the importance of the information source used for patient health status.
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References
EM Andresen GW Gravitt ME Aydelotte CA Podgorski (1999) ArticleTitleLimitations of the SF-36 in a sample of nursing home residents Age Ageing 28 IssueID6 562–566 Occurrence Handle1:STN:280:DC%2BD3c%2Fmsl2qug%3D%3D Occurrence Handle10604509 Occurrence Handle10.1093/ageing/28.6.562
JE Brazier SJ Walters JP Nicholl B Kohler (1996) ArticleTitleUsing the SF-36 and Euroqol on an elderly population Qual Life Res 5 IssueID2 195–204 Occurrence Handle1:STN:280:DyaK2s7gsVOjtw%3D%3D Occurrence Handle8998488 Occurrence Handle10.1007/BF00434741
V Hayes J Morris C Wolfe M Morgan (1995) ArticleTitleThe SF-36 health survey questionnaire: Is it suitable for use with older adults Age Ageing 24 IssueID2 120–125 Occurrence Handle1:STN:280:DyaK2MzhtlKhug%3D%3D Occurrence Handle7793333 Occurrence Handle10.1093/ageing/24.2.120
JP Hobson RJ Meara (1997) ArticleTitleIs the SF-36 health survey questionnaire suitable as a self-report measure of the health status of older adults with Parkinson’s disease? Qual Life Res 6 IssueID3 213–216 Occurrence Handle1:STN:280:DyaK2szntVKqsA%3D%3D Occurrence Handle9226978 Occurrence Handle10.1023/A:1026454503917
PG O’Mahony H Rodgers RG Thomson R Dobson OF James (1998) ArticleTitleIs the SF-36 suitable for assessing health status of older stroke patients? Age Ageing 27 IssueID1 19–22 Occurrence Handle9504362 Occurrence Handle10.1093/ageing/27.1.19
SG Parker SM Peet C Jagger M Farhan CM Castleden (1998) ArticleTitleMeasuring health status in older patients. The SF-36 in practice Age Ageing 27 IssueID1 13–18 Occurrence Handle1:STN:280:DyaK1c7mt1yrtQ%3D%3D Occurrence Handle9504361 Occurrence Handle10.1093/ageing/27.1.13
LM Nelson WTJ Longstreth TD Koepsell G Belle Particlevan (1990) ArticleTitleProxy respondents in epidemiologic research Epidemiol Rev 12 71–86 Occurrence Handle1:STN:280:DyaK3M7jvVKlug%3D%3D Occurrence Handle2286227
L Burgio J Leon (1997) ArticleTitleUsing patient and proxy reports as outcome measures in Alzheimer disease research Alzheimer Dis Assoc Disord 11 IssueIDSuppl 6 179–180 Occurrence Handle9437464
T Ostbye S Tyas I McDowell J Koval (1997) ArticleTitleReported activities of daily living: Agreement between elderly subjects with and without dementia and their caregivers Age Ageing 26 IssueID2 99–106 Occurrence Handle1:STN:280:DyaK2szitV2gtw%3D%3D Occurrence Handle9177666 Occurrence Handle10.1093/ageing/26.2.99
JL Novella J Ankri I Morrone et al. (2001) ArticleTitleEvaluation of the quality of life in dementia with a Generic quality of life Questionnaire: The duke health profile Dement Geriatr Cogn Disord 12 IssueID2 158–166 Occurrence Handle1:STN:280:DC%2BD3MzptlOhtA%3D%3D Occurrence Handle11173890 Occurrence Handle10.1159/000051251
SI Zimmerman J Magaziner (1994) ArticleTitleMethodological issues in measuring the functional status of cognitively impaired nursing home residents: The use of proxies and performance-based measures Alzheimer Dis Assoc Disord 8 IssueIDSuppl 1 S281–S290 Occurrence Handle8068270
JL Novella C Jochum J Ankri I Morrone D Jolly F Blanchard (2001) ArticleTitleMeasuring general health status in dementia: Practical and methodological issues in using the SF-36 Aging 13 IssueID5 362–369 Occurrence Handle1:STN:280:DC%2BD38%2FptFOhsw%3D%3D Occurrence Handle11820709
American PA. Diagnostic and Statistical Manual of Mental Disorders: DSM-III-R. 3rd ed. Washington, DC, 1987.
M Folstein S Folstein HP Mc (1975) ArticleTitle“Mini mental state’’ a practical method for grading the cognitive state of patients for the clinician J Psychiat Res 12 189–198 Occurrence Handle1:STN:280:DyaE28%2FntFKjtw%3D%3D Occurrence Handle1202204 Occurrence Handle10.1016/0022-3956(75)90026-6
A Leplege M Mesbah P Marquis (1995) ArticleTitlePreliminary analysis of the psychometric properties of the French version of an international questionnaire measuring the quality of life: The MOS SF-36 (version 1.1) Rev Epidemiol Sante Publique 43 IssueID4 371–379 Occurrence Handle1:STN:280:DyaK2MzpslSmsA%3D%3D Occurrence Handle7667543
CA McHorney JEJ Ware AE Raczek (1993) ArticleTitleThe MOS 36-Item Short-Form Health Survey (SF-36): II. Psychometric and clinical tests of validity in measuring physical and mental health constructs Med Care 31 IssueID3 247–263 Occurrence Handle1:STN:280:DyaK3s7ps1antA%3D%3D Occurrence Handle8450681 Occurrence Handle10.1097/00005650-199303000-00006
AL Stewart RD Hays JEJ Ware (1988) ArticleTitleThe MOS short-form general health survey. Reliability and validity in a patient population Med Care 26 IssueID7 724–735 Occurrence Handle1:STN:280:DyaL1c3nsFGnsg%3D%3D Occurrence Handle3393032 Occurrence Handle10.1097/00005650-198807000-00007
J Ware C Sherbourne (1992) ArticleTitleThe MOS 36-Item Short-Form health survey (SF-36) Med Care 30 IssueID6 473–481 Occurrence Handle1593914 Occurrence Handle10.1097/00005650-199206000-00002
S Katz T Down H Cash R Grotz (1970) ArticleTitleProgress in development of index of ADL Gerontologist 10 20–30 Occurrence Handle1:STN:280:DyaE3c3gs1OgsQ%3D%3D Occurrence Handle5420677 Occurrence Handle10.1093/geront/10.1_Part_1.20
C Hughes L Berg W Danziger L Coben R Martin (1982) ArticleTitleA new clinical scale for the staging of dementia Br J Psychiatry 14 566–572 Occurrence Handle10.1192/bjp.140.6.566
G Bravo L Potvin (1991) ArticleTitleEstimating the reliability of continuous measures with Cronbach’s alpha or the intraclass correlation coefficient: Toward the integration of two traditions J Clin Epidemiol 44 IssueID4–5 381–390 Occurrence Handle1:STN:280:DyaK3M7os1Wktg%3D%3D Occurrence Handle2010781 Occurrence Handle10.1016/0895-4356(91)90076-L
L Cronbach (1951) ArticleTitleCoefficient alpha and the internal structure of tests Psychometrika 16 IssueID3 297–334 Occurrence Handle10.1007/BF02310555
JM Bland DG Altman (1990) ArticleTitleA note on the use of the intraclass correlation coefficient in the evaluation of agreement between two methods of measurement Comput Biol Med 20 IssueID5 337–340 Occurrence Handle1:STN:280:DyaK3M%2FnvVSqug%3D%3D Occurrence Handle2257734 Occurrence Handle10.1016/0010-4825(90)90013-F
JM Bland DG Altman (1997) ArticleTitleCronbach’s alpha Br Med J 314 IssueID7080 7572 Occurrence Handle10.1136/bmj.314.7080.572
RA Deyo P Diehr DL Patrick (1991) ArticleTitleReproducibility and responsiveness of health status measures. Statistics and strategies for evaluation Control Clin Trials 12 IssueID4 Suppl 142S–158S Occurrence Handle1:STN:280:DyaK387js1yitw%3D%3D Occurrence Handle1663851 Occurrence Handle10.1016/S0197-2456(05)80019-4
P Schrout J Fleiss (1979) ArticleTitleIntraclass correlations: Uses in assessing rater reliability Psychol Bull 86 IssueID2 420–428 Occurrence Handle10.1037/0033-2909.86.2.420
JC Nunnally (1978) Psychometric Theory EditionNumber2 McGraw-Hill New York
J Lee D Koh CN Ong (1989) ArticleTitleStatistical evaluation of agreement between two methods for measuring a quantitative variable Comput Biol Med 19 IssueID1 61–70 Occurrence Handle1:STN:280:DyaL1M7js1GgtQ%3D%3D Occurrence Handle2917462 Occurrence Handle10.1016/0010-4825(89)90036-X
J Fleiss (1986) The Design and Analysis of Clinical Experiments John Wiley and Sons New York
J Cohen (1988) Statistical Power Analysis for the Behaviour Sciences Hillsdale NJ
SS Bassett J Magaziner JR Hebel (1990) ArticleTitleReliability of proxy response on mental health indices for aged, community-dwelling women Psychol Aging 5 IssueID1 127–132 Occurrence Handle1:STN:280:DyaK3c7psl2lsw%3D%3D Occurrence Handle2317291 Occurrence Handle10.1037/0882-7974.5.1.127
J Magaziner SS Bassett JR Hebel A Gruber-Baldini (1996) ArticleTitleUse of proxies to measure health and functional status in epidemiologic studies of community-dwelling women aged 65 years and older Am J Epidemiol 143 IssueID3 283–292 Occurrence Handle1:STN:280:DyaK287kvVymtg%3D%3D Occurrence Handle8561163 Occurrence Handle10.1093/oxfordjournals.aje.a008740
J Magaziner SI Zimmerman AL Gruber-Baldini JR Hebel KM Fox (1997) ArticleTitleProxy reporting in five areas of functional status. Comparison with self-reports and observations of performance Am J Epidemiol 146 IssueID5 418–428 Occurrence Handle1:STN:280:DyaK2svjsFygtw%3D%3D Occurrence Handle9290502 Occurrence Handle10.1093/oxfordjournals.aje.a009295
RF Coen CA O’Boyle D Coakley BA Lawlor (2002) ArticleTitleIndividual quality of life factors distinguishing low-burden and high-burden caregivers of dementia patients Dement Geriatr Cogn Disord 13 IssueID3 164–170 Occurrence Handle11893838 Occurrence Handle10.1159/000048648
F Boyer JL Novella I Morrone D Jolly F Blanchard (2004) ArticleTitleAgreement between dementia patient report and proxy reports using the Nottingham Health Profile Int J Geriatr Psychiatry 19 IssueID11 1026–1034 Occurrence Handle1:STN:280:DC%2BD2crmtFyksw%3D%3D Occurrence Handle15481077 Occurrence Handle10.1002/gps.1191
RE Ready BR Ott J Grace (2004) ArticleTitlePatient versus informant perspectives of Quality of Life in Mild Cognitive Impairment and Alzheimer’s disease Int J Geriatr Psychiatry 19 IssueID3 256–265 Occurrence Handle15027041 Occurrence Handle10.1002/gps.1075
DC Farrow JM Samet (1990) ArticleTitleComparability of information provided by elderly cancer patients and surrogates regarding health and functional status, social network, and life events Epidemiology 1 IssueID5 370–376 Occurrence Handle1:STN:280:DyaK3M7ns1WjtQ%3D%3D Occurrence Handle2078612 Occurrence Handle10.1097/00001648-199009000-00006
RD Hays BG Vickrey BP Hermann et al. (1995) ArticleTitleAgreement between self reports and proxy reports of quality of life in epilepsy patients Qual Life Res 4 IssueID2 159–168 Occurrence Handle1:STN:280:DyaK2M3pvFCgsQ%3D%3D Occurrence Handle7780382 Occurrence Handle10.1007/BF01833609
U Pierre S Wood-Dauphinee N Korner-Bitensky D Gayton J Hanley (1998) ArticleTitleProxy use of the Canadian SF-36 in rating health status of the disabled elderly J Clin Epidemiol 51 IssueID11 983–990 Occurrence Handle1:STN:280:DyaK1M%2Fjt1SjtA%3D%3D Occurrence Handle9817116 Occurrence Handle10.1016/S0895-4356(98)00090-0
J Magaziner EM Simonsick TM Kashner JR Hebel (1988) ArticleTitlePatient-proxy response comparability on measures of patient health and functional status J Clin Epidemiol 41 IssueID11 1065–1074 Occurrence Handle1:STN:280:DyaL1M%2FotVOkug%3D%3D Occurrence Handle3204417 Occurrence Handle10.1016/0895-4356(88)90076-5
CM Moinpour B Lyons SP Schmidt K Chansky RA Patchell (2000) ArticleTitleSubstituting 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 9 IssueID2 219–231 Occurrence Handle1:STN:280:DC%2BD3M%2FhsVOhtw%3D%3D Occurrence Handle10983485 Occurrence Handle10.1023/A:1008978512572
LP Sands P Ferreira AL Stewart M Brod K Yaffe (2004) ArticleTitleWhat explains differences between dementia patients’ and their caregivers’ ratings of patients’ quality of life? Am J Geriatr Psychiatry 12 IssueID3 272–280 Occurrence Handle15126228
KC Sneeuw NK Aaronson MA Sprangers SB Detmar LD Wever JH Schornagel (1997) ArticleTitleValue of caregiver ratings in evaluating the quality of life of patients with cancer J Clin Oncol 15 IssueID3 1206–1217 Occurrence Handle1:STN:280:DyaK2s3htlyktA%3D%3D Occurrence Handle9060565
C Brunelli M Costantini P Giulio ParticleDi et al. (1998) ArticleTitleQuality-of-life evaluation: When do terminal cancer patients and health-care providers agree? J Pain Symptom Manage 15 IssueID3 151–158 Occurrence Handle1:STN:280:DyaK1c3isFaktA%3D%3D Occurrence Handle9564116 Occurrence Handle10.1016/S0885-3924(97)00351-5
CA Jones DH Feeny (2005) ArticleTitleAgreement between patient and proxy responses of health-related quality of life after hip fracture J Am Geriatr Soc 53 IssueID7 1227–1233 Occurrence Handle16108944 Occurrence Handle10.1111/j.1532-5415.2005.53374.x
AM Epstein JA Hall J Tognetti LH Son LJ Conant (1989) ArticleTitleUsing proxies to evaluate quality of life. Can they provide valid information about patients’ health status and satisfaction with medical care? Med Care 27 IssueID3 Suppl S91–S98 Occurrence Handle1:STN:280:DyaL1M7lvVegsQ%3D%3D Occurrence Handle2921889 Occurrence Handle10.1097/00005650-198903001-00008
ML Rothman SC Hedrick KA Bulcroft DH Hickam LZ Rubenstein (1991) ArticleTitleThe validity of proxy-generated scores as measures of patient health status Med Care 29 IssueID2 115–124 Occurrence Handle1:STN:280:DyaK3M7jtlSlug%3D%3D Occurrence Handle1994145 Occurrence Handle10.1097/00005650-199102000-00004
SS Bassett J Magaziner JR Hebel (1990) ArticleTitleReliability of proxy response on mental health indices for aged, community-dwelling women Psychol Aging 5 IssueID1 127–132 Occurrence Handle1:STN:280:DyaK3c7psl2lsw%3D%3D Occurrence Handle2317291 Occurrence Handle10.1037/0882-7974.5.1.127
J Magaziner SI Zimmerman AL Gruber-Baldini JR Hebel KM Fox (1997) ArticleTitleProxy reporting in five areas of functional status. Comparison with self-reports and observations of performance Am J Epidemiol 146 IssueID5 418–428 Occurrence Handle1:STN:280:DyaK2svjsFygtw%3D%3D Occurrence Handle9290502 Occurrence Handle10.1093/oxfordjournals.aje.a009295
GH Guyatt DH Feeny DL Patrick (1993) ArticleTitleMeasuring health-related quality of life Ann Intern Med 118 IssueID8 622–629 Occurrence Handle1:STN:280:DyaK3s7pvFWhtw%3D%3D Occurrence Handle8452328 Occurrence Handle10.7326/0003-4819-118-8-199304150-00009
DR Berlowitz W Du L Kazis S Lewis (1995) ArticleTitleHealth-related quality of life of nursing home residents: Differences in patient and provider perceptions J Am Geriatr Soc 43 IssueID7 799–802 Occurrence Handle1:STN:280:DyaK2MzisFGhsA%3D%3D Occurrence Handle7602036
JY Yip KH Wilber RC Myrtle DN Grazman (2001) ArticleTitleComparison of older adult subject and proxy responses on the SF-36 health-related quality of life instrument Aging Ment Health 5 IssueID2 136–142 Occurrence Handle1:STN:280:DC%2BD3MvmsFeqsQ%3D%3D Occurrence Handle11511060 Occurrence Handle10.1080/13607860120038357
AE Ball EM Russell DG Seymour WR Primrose AM Garratt (2001) ArticleTitleProblems in using Health Survey Questionnaires in Older Patients with Physical Disabilities. Can proxies be used to complete the sf-36? Gerontology 47 IssueID6 334–340 Occurrence Handle1:STN:280:DC%2BD3MnnsFSgtA%3D%3D Occurrence Handle11721148 Occurrence Handle10.1159/000052824
Fleming A, Cook KF, Nelson ND, Lai EC. Proxy reports in Parkinson’s disease: Caregiver and patient self-reports of quality of life and physical activity. Mov Disord 2005; Nov; 20(11): 1462–1468.
AC Justice L Rabeneck RD Hays AW Wu SA Bozzette (1999) ArticleTitleSensitivity, 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 21 IssueID2 126–133 Occurrence Handle1:STN:280:DyaK1M3oslGnuw%3D%3D Occurrence Handle10360804
KC Sneeuw NK Aaronson D Osoba et al. (1997) ArticleTitleThe use of significant others as proxy raters of the quality of life of patients with brain cancer Med Care 35 IssueID5 490–506 Occurrence Handle1:STN:280:DyaK2s3osFSltg%3D%3D Occurrence Handle9140337 Occurrence Handle10.1097/00005650-199705000-00006
KC Sneeuw NK Aaronson RJ Haan Particlede M Limburg (1997) ArticleTitleAssessing quality of life after stroke. The value and limitations of proxy ratings Stroke 28 IssueID8 1541–1549 Occurrence Handle1:STN:280:DyaK2svgs1artw%3D%3D Occurrence Handle9259746 Occurrence Handle10.1161/01.STR.28.8.1541
MA Sprangers NK Aaronson (1992) ArticleTitleThe role of health care providers and significant others in evaluating the quality of life of patients with chronic disease: A review J Clin Epidemiol 45 IssueID7 743–760 Occurrence Handle1:STN:280:DyaK38zhsl2ksQ%3D%3D Occurrence Handle1619454 Occurrence Handle10.1016/0895-4356(92)90052-O
O Zanetti C Geroldi GB Frisoni A Bianchetti M Trabucchi (1999) ArticleTitleContrasting 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 47 IssueID2 196–202 Occurrence Handle1:STN:280:DyaK1M7ktVOqsg%3D%3D Occurrence Handle9988291
K Long S Sudha EJ Mutran (1998) ArticleTitleElder-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 46 IssueID9 1103–1111 Occurrence Handle1:STN:280:DyaK1cvgsFGisg%3D%3D Occurrence Handle9736103
RA Pruchno CJ Burant ND Peters (1997) ArticleTitleTypologies of caregiving families: Family congruence and individual well-being Gerontologist 37 IssueID2 157–167 Occurrence Handle1:STN:280:DyaK2s3ntlKntw%3D%3D Occurrence Handle9127972 Occurrence Handle10.1093/geront/37.2.157
EC Clipp LK George (1993) ArticleTitleDementia and cancer: A comparison of spouse caregivers Gerontologist 33 IssueID4 534–541 Occurrence Handle1:STN:280:DyaK3szoslOjtg%3D%3D Occurrence Handle8375684 Occurrence Handle10.1093/geront/33.4.534
J McCusker AM Stoddard (1984) ArticleTitleUse of a surrogate for the Sickness Impact Profile Med Care 22 IssueID9 789–795 Occurrence Handle1:STN:280:DyaL2M%2FjsFejuw%3D%3D Occurrence Handle6492907 Occurrence Handle10.1097/00005650-198409000-00002
HA Kiyak L Teri S Borson (1994) ArticleTitlePhysical and functional health assessment in normal aging and in Alzheimer’s disease: Self-reports vs family reports Gerontologist 34 IssueID3 324–330 Occurrence Handle1:STN:280:DyaK2czlslCqsA%3D%3D Occurrence Handle8076873 Occurrence Handle10.1093/geront/34.3.324
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Novella, J., Boyer, F., Jochum, C. et al. Health Status in Patients with Alzheimer’s Disease: An Investigation of Inter-rater Agreement. Qual Life Res 15, 811–819 (2006). https://doi.org/10.1007/s11136-005-5434-7
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DOI: https://doi.org/10.1007/s11136-005-5434-7