Published Online
on June 29, 2006

A more recent version of this article appeared on August 1, 2006

This Article Full Text (PDF) All Versions of this Article: 37/8/2081    most recent 01.STR.0000230583.10311.9fv1 Alert me when this article is cited Alert me if a correction is posted Services Email this article to a friend Similar articles in this journal Similar articles in PubMed Alert me to new issues of the journal Download to citation manager Request Permissions Citing Articles Citing Articles via HighWire Citing Articles via Google Scholar Google Scholar Articles by Williams, L. S. Articles by Kroenke, K. Search for Related Content PubMed PubMed Citation Articles by Williams, L. S. Articles by Kroenke, K. Pubmed/NCBI databases Medline Plus Health Information Family Issues Stroke Related Collections Health policy and outcome research Behavioral/psychosocial - stroke Acute Cerebral Infarction Related Article

Submitted on December 23, 2005
Revised on March 23, 2006
Accepted on May 3, 2006

How Valid Are Family Proxy Assessments of Stroke Patients’ Health-Related Quality of Life?

Linda S. Williams MD^*; Tamilyn Bakas RN, DNS; Edward Brizendine MS; Laurie Plue MA; Wanzhu Tu PhD; Hugh Hendrie MB, ChB, DSc; and Kurt Kroenke MD

From the Health Services Research and Development Service, Roudebush VAMC, Indianapolis, Ind (L.S.W., L.P.); the Departments of Neurology (L.S.W.) and Medicine (E.B., W.T., K.K.), Indiana University School of Medicine, Indianapolis, Ind; Regenstrief Institute, Inc (L.S.W., W.T., H.H., K.K.), Indianapolis, Ind; and the Department of Adult Health, Indiana University School of Nursing, Indianapolis, Ind (T.B.).

^* To whom correspondence should be addressed. E-mail: linwilli{at}iupui.edu.

Background and Purpose--Proxy respondents are often needed to report outcomes in stroke survivors, but they typically systematically rate impairments worse than patients themselves. The magnitude of this difference, the degree of agreement between patients and proxies, and the factors influencing agreement are not well known.

Methods--We compared patient and family proxy health-related quality of life (HRQL) responses in 225 patient-proxy pairs enrolled in a clinical trial for poststroke depression. We used paired t-tests and the intraclass correlation (ICC) statistic to evaluate the agreement between patient and proxy domain scores and the overall Stroke-specific Quality of Life (SS-QOL) score. We used multivariate linear regression to model patient- and proxy-reported SS-QOL scores.

Results--Patients were older (63 versus 55 years) and less often female (48% versus 74%) than proxies. Proxies rated all domains of SS-SQOL slightly worse than patients. The Mood, Energy, and Thinking domains had the greatest disparity with mean patient-proxy differences of 0.45, 0.37, and 0.37 points, respectively. The ICC for each domain ranged from 0.30 (role function) to 0.59 (physical function). Proxy overall SS-QOL score was also lower (worse) than patient score (3.7 versus 3.4, P<0.001) with ICC of 0.41. Agreement was higher among patient-proxy pairs with higher patient depression scores and with lower proxy report of caregiving burden.

Conclusions--Proxies systematically report more dysfunction in multiple aspects of HRQL than stroke patients themselves. Agreement between patient and proxy HRQL domain scores is modest at best and is affected by patient depression and proxy perception of burden. These differences may be large enough to impact the outcome assessment in stroke clinical trials.

Key words: caregiver • outcomes • quality of life • scales • stroke

Related Article:

The Value of Quality of Life Research in Stroke

Brett Kissela
Stroke 2006 37: 1958-1959. [Extract] [Full Text] [PDF]

This article has been cited by other articles:

				F. J. Carod-Artal, L. F. Coral, D. S. Trizotto, and C. M. Moreira Self- and Proxy-Report Agreement on the Stroke Impact Scale Stroke, October 1, 2009; 40(10): 3308 - 3314. [Abstract] [Full Text] [PDF]

				I. Muus, M. Petzold, and K. C. Ringsberg Health-Related Quality of Life After Stroke: Reliability of Proxy Responses Clin Nurs Res, May 1, 2009; 18(2): 103 - 118. [Abstract] [PDF]

				A. Berg, J. Lonnqvist, H. Palomaki, and M. Kaste Assessment of Depression After Stroke: A Comparison of Different Screening Instruments Stroke, February 1, 2009; 40(2): 523 - 529. [Abstract] [Full Text] [PDF]

				E. Townend, M. Brady, and K. McLaughlan A Systematic Evaluation of the Adaptation of Depression Diagnostic Methods for Stroke Survivors Who Have Aphasia Stroke, November 1, 2007; 38(11): 3076 - 3083. [Abstract] [Full Text] [PDF]

				K. Hilari, S. Owen, and S. J. Farrelly Proxy and self-report agreement on the Stroke and Aphasia Quality of Life Scale-39 J. Neurol. Neurosurg. Psychiatry, October 1, 2007; 78(10): 1072 - 1075. [Abstract] [Full Text] [PDF]

				J. W. Gargano, M. J. Reeves, and for the Paul Coverdell National Acute Stroke Regis Sex Differences in Stroke Recovery and Stroke-Specific Quality of Life: Results From a Statewide Stroke Registry Stroke, September 1, 2007; 38(9): 2541 - 2548. [Abstract] [Full Text] [PDF]

				B. Kissela The Value of Quality of Life Research in Stroke Stroke, August 1, 2006; 37(8): 1958 - 1959. [Full Text] [PDF]