Research Article| Volume 334, ISSUE 1-2, P143-147, November 15, 2013

Analyzing differences between patient and proxy on Patient Reported Outcomes in multiple sclerosis

Published:September 09, 2013DOI:



      Proxy respondents, partners of multiple sclerosis (MS) patients, can provide valuable information on the MS patients' disease. In an earlier publication we found relatively good agreement on patient reported outcomes (PROs) measuring physical impact and functioning, but we found large differences on (neuro)psychological scales.


      We aim to identify patient and proxy related variables explaining differences between patients' and proxies' ratings on five PROs.


      We report on data from 175 MS patients and proxy respondents. Regression analyses were performed, using as dependent variable the mean differences on five scales: Physical and Psychological scale of the Multiple Sclerosis Impact Scale (MSIS-29), the Multiple Sclerosis Walking Scale (MSWS), Guy's Neurological Disability Scale (GNDS) and the Multiple Sclerosis Neuropsychological Screening Questionnaire (MSNQ). The independent variables were patient, proxy and disease related variables.


      Caregiver strain was significantly related to differences between patient and proxy scores for all five PROs. A higher level of patient anxiety on the HADS was linked to larger differences on all PROs except the GNDS. In addition, cognitive functioning, proxy depression, walking ability, proxy gender and MS related disability were contributing to the discrepancies.


      We found several patient and proxy factors that may contribute to discrepancies between patient and proxy scores on MS PROs. The most important factor is caregiver burden.


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        • Bosma L.
        • Kragt J.J.
        • Polman C.H.
        • Uitdehaag B.M.
        Walking speed, rather than Expanded Disability Status Scale, relates to long-term patient-reported impact in progressive MS.
        Mult Scler. 2013; 19: 326-333
        • Giordano A.
        • Pucci E.
        • Naldi P.
        • Mendozzi L.
        • Milanese C.
        • Tronci F.
        • et al.
        Responsiveness of patient reported outcome measures in multiple sclerosis relapses: the REMS study.
        J Neurol Neurosurg Psychiatry. 2009; 80: 1023-1028
        • McKenna S.P.
        • Doward L.C.
        • Twiss J.
        • Hagell P.
        • Oprandi N.C.
        • Fisk J.
        • et al.
        International development of the patient-reported outcome indices for multiple sclerosis (PRIMUS).
        Value Health. 2010; 13: 946-951
        • Schaffler N.
        • Schonberg P.
        • Stephan J.
        • Stellmann J.P.
        • Gold S.M.
        • Heesen C.
        Comparison of patient-reported outcome measures in multiple sclerosis.
        Acta Neurol Scand. 2013; 128: 114-121
        • Twiss J.
        • Doward L.C.
        • McKenna S.P.
        • Eckert B.
        Interpreting scores on multiple sclerosis-specific patient reported outcome measures (the PRIMUS and U-FIS).
        Health Qual Life Outcomes. 2010; 8: 117
        • van der Linden F.A.
        • Kragt J.J.
        • Klein M.
        • van der Ploeg H.M.
        • Polman C.H.
        • Uitdehaag B.M.
        Psychometric evaluation of the multiple sclerosis impact scale (MSIS-29) for proxy use.
        J Neurol Neurosurg Psychiatry. 2005; 76: 1677-1681
        • Sonder J.
        • Bosma L.
        • van der L.F.
        • Knol D.
        • Polman C.
        • Uitdehaag B.
        Proxy measurements in multiple sclerosis: agreement on different patient-reported outcome scales.
        Mult Scler. 2012; 18: 196-201
        • Tripoliti E.
        • Campbell C.
        • Pring T.
        • Taylor-Goh S.
        Quality of life in multiple sclerosis: should clinicians trust proxy ratings?.
        Mult Scler. 2007; 13: 1190-1194
        • Bruce J.M.
        • Arnett P.A.
        Self-reported everyday memory and depression in patients with multiple sclerosis.
        J Clin Exp Neuropsychol. 2004; 26: 200-214
        • Carone D.A.
        • Benedict R.H.
        • Munschauer 3rd, F.E.
        • Fishman I.
        • Weinstock-Guttman B.
        Interpreting patient/informant discrepancies of reported cognitive symptoms in MS.
        J Int Neuropsychol Soc. 2005; 11: 574-583
        • Courts N.F.
        • Newton A.N.
        • McNeal L.J.
        Husbands and wives living with multiple sclerosis.
        J Neurosci Nurs. 2005; 37: 20-27
        • Buchanan R.J.
        • Radin D.
        • Huang C.
        Burden among male caregivers assisting people with multiple sclerosis.
        Gend Med. 2010; 7: 637-646
        • Dunn J.
        Impact of mobility impairment on the burden of caregiving in individuals with multiple sclerosis.
        Expert Rev Pharmacoecon Outcomes Res. 2010; 10: 433-440
        • Figved N.
        • Myhr K.M.
        • Larsen J.P.
        • Aarsland D.
        Caregiver burden in multiple sclerosis: the impact of neuropsychiatric symptoms.
        J Neurol Neurosurg Psychiatry. 2007; 78: 1097-1102
        • Poser C.M.
        • Paty D.W.
        • Scheinberg L.
        • McDonald W.I.
        • Davis F.A.
        • Ebers G.C.
        • et al.
        New diagnostic criteria for multiple sclerosis: guidelines for research protocols.
        Ann Neurol. 1983; 13: 227-231
        • Polman C.H.
        • Reingold S.C.
        • Edan G.
        • Filippi M.
        • Hartung H.P.
        • Kappos L.
        • et al.
        Diagnostic criteria for multiple sclerosis: 2005 revisions to the “McDonald Criteria”.
        Ann Neurol. 2005; 58: 840-846
        • Hobart J.
        • Lamping D.
        • Fitzpatrick R.
        • Riazi A.
        • Thompson A.
        The Multiple Sclerosis Impact Scale (MSIS-29): a new patient-based outcome measure.
        Brain. 2001; 124: 962-973
        • Hobart J.C.
        • Riazi A.
        • Lamping D.L.
        • Fitzpatrick R.
        • Thompson A.J.
        Measuring the impact of MS on walking ability: the 12-Item MS Walking Scale (MSWS-12).
        Neurology. 2003; 60 ([14]): 31-36
        • Sharrack B.
        • Hughes R.A.
        The Guy's Neurological Disability Scale (GNDS): a new disability measure for multiple sclerosis.
        Mult Scler. 1999; 5: 223-233
        • Benedict R.H.
        • Munschauer F.
        • Linn R.
        • Miller C.
        • Murphy E.
        • Foley F.
        • et al.
        Screening for multiple sclerosis cognitive impairment using a self-administered 15-item questionnaire.
        Mult Scler. 2003; 9: 95-101
        • Rao S.M.
        • in collaboration with the Cognitive Function Study Group of the National Multiple Sclerosis Society
        A manual for the Brief Repeatable Battery of Neuropsychological Tests in multiple sclerosis.
        in: Section of Neuropsychology. Medical College of Wisconsin, Milwaukee, WI1990
      1. Rao SM. A manual for the brief, repeatable battery of neuropsychological tests in multiple sclerosis. Unpublished manuscript, Section of Neuropsychology, Department of Neurology, Medical College of Wisconsin: Milwaukee, WI, 1991.

        • Kurtzke J.F.
        Rating neurologic impairment in multiple sclerosis: an expanded disability status scale (EDSS).
        Neurology. 1983; 33: 1444-1452
        • Zigmond A.S.
        • Snaith R.P.
        The hospital anxiety and depression scale.
        Acta Psychiatr Scand. 1983; 67: 361-370
        • McHorney C.A.
        • Ware Jr., J.E.
        • Raczek A.E.
        The 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. 1993; 31: 247-263
        • McHorney C.A.
        • Ware Jr., J.E.
        • Lu J.F.
        • Sherbourne C.D.
        The MOS 36-item Short-Form Health Survey (SF-36): III. Tests of data quality, scaling assumptions, and reliability across diverse patient groups.
        Med Care. 1994; 32: 40-66
        • Ware Jr., J.E.
        • Sherbourne C.D.
        The MOS 36-item short-form health survey (SF-36). I. Conceptual framework and item selection.
        Med Care. 1992; 30: 473-483
        • Robinson B.C.
        Validation of a Caregiver Strain Index.
        J Gerontol. 1983; 38: 344-348
        • van Exel N.J.
        • Scholteop Reimer W.J.
        • Brouwer W.B.
        • van den B.B.
        • Koopmanschap M.A.
        • van den Bos G.A.
        Instruments for assessing the burden of informal caregiving for stroke patients in clinical practice: a comparison of CSI, CRA, SCQ and self-rated burden.
        Clin Rehabil. 2004; 18: 203-214
        • Hobart J.C.
        • Riazi A.
        • Lamping D.L.
        • Fitzpatrick R.
        • Thompson A.J.
        Improving the evaluation of therapeutic interventions in multiple sclerosis: development of a patient-based measure of outcome.
        Health Technol Assess. 2004; 8 (1-iii,48): iii
        • Sepulcre J.
        • Vanotti S.
        • Hernandez R.
        • Sandoval G.
        • Caceres F.
        • Garcea O.
        • et al.
        Cognitive impairment in patients with multiple sclerosis using the Brief Repeatable Battery-Neuropsychology test.
        Mult Scler. 2006; 12: 187-195
        • Julian L.
        • Merluzzi N.M.
        • Mohr D.C.
        The relationship among depression, subjective cognitive impairment, and neuropsychological performance in multiple sclerosis.
        Mult Scler. 2007; 13: 81-86
        • Sonder J.M.
        • Mokkink L.B.
        • van der Linden F.A.
        • Polman C.H.
        • Uitdehaag B.M.
        Validation and interpretation of the Dutch version of the Multiple Sclerosis Neuropsychological Screening Questionnaire.
        J Neurol Sci. 2012; 320 ([15]): 91-96