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BMC Neurology

, 9:12

First Online: 25 March 2009Received: 30 June 2008Accepted: 25 March 2009


BackgroundThis study examined whether MS patients and proxy respondents agreed on change in disease impact, which was induced by treatment. This may be of interest in situations when patients suffer from limitations that interfere with reliable self-assessment, such as cognitive impairment.

MethodsMS patients and proxies completed the Multiple Sclerosis Impact Scale MSIS-29 before and after intravenous steroid treatment. Analyses focused on patient-proxy agreement between MSIS-29 change scores. Transition ratings were used to measure the patient-s judgement of change and whether this change was reflected in the MSIS-29 change of patients and proxies. Receiver operating characteristic ROC analyses were also performed to examine the diagnostic properties of the MSIS-29 when completed by patients and proxies.

Results42 patients and proxy respondents completed the MSIS-29 at baseline and follow-up. Patient-proxy differences between change scores on the physical and psychological MSIS-29 subscale were quite small, although large variability was found. The direction of mean change was in concordance with the transition ratings of the patients. Results of the ROC analyses of the MSIS-29 were similar when completed by patients physical scale: AUC = 0.79, 95% CI: 0.65 – 0.93 and 0.66, 95% CI: 0.48 – 0.84 for the psychological scale and proxies physical scale: 0.80, 95% CI: 0.72 – 0.96 and 0.71, 95% CI: 0.56 – 0.87 for the psychological scale

ConclusionAlthough the results need to be further explored in larger samples, these results do point towards possible use of proxy respondents to assess patient perceived treatment change at the group level.

Electronic supplementary materialThe online version of this article doi:10.1186-1471-2377-9-12 contains supplementary material, which is available to authorized users.

Jolijn J Kragt, Jeremy C Hobart, Martin Klein, Alan J Thompson, Henk M van der Ploeg, Chris H Polman and Bernard MJ Uitdehaag contributed equally to this work.

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Autor: Femke AH van der Linden - Jolijn J Kragt - Jeremy C Hobart - Martin Klein - Alan J Thompson - Henk M van der Ploeg - Ch


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