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Perceptions of Health Status in Multiple Sclerosis Patients and Their Doctors

Published online by Cambridge University Press:  23 September 2014

Marcelo Kremenchutzky*
Affiliation:
Schulich School of Medicine, University of Western Ontario, London
Len Walt
Affiliation:
Biogen Idec Canada Inc., Mississauga, Ontario, Canada
*
Marcelo Kremenchutzky, Neurology, Schulich School of Medicine, University of Western Ontario, 339 Windermere Road, London, Ontario, N6A 5A5, Canada. Email: marcelo.kremenchutzky@lhsc.on.ca.
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Abstract

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Objective:

To compare neurologist and patient perceptions of multiple sclerosis (MS)-related health status.

Methods:

MS patients (n=99) were recruited from six sites in Canada. Following a consultation with their neurologist, patients estimated their relapse frequency, rated their general health and quality of life (QoL), reviewed descriptions of eight health domains and selected the three most important, and completed a utility assessment using the standard gamble (SG). Concurrently, neurologists independently used the same instruments to rate their patients' health status. Assessments were compared on the basis of paired mean values of both groups and the degree of exact agreement quantified by intraclass coefficient (ICC) and kappa analyses, which yield values of 1.0 with 100% agreement.

Results:

There were significant differences (p<0.001) between patient and neurologist ratings for relapses in the last year (0.86 vs. 0.4, respectively), QoL (61.2 vs. 69.7 (maximum score = 100) and utility (0.864 vs. 0.971); ICC analysis revealed moderate to poor levels of agreement (0.56 for QoL to 0.03 for SG). There was little concordance in identification of important health domain and the only significant associations were in bodily pain and social functioning (kappa statistic = 0.24, p = 0.026 for both). Neurologists identified physical functioning domains as important, while patients placed more emphasis on mental health domains.

Conclusions:

Discrepancies between neurologist and patient perceptions of MS were observed. The study identifies a need to educate neurologists on the recognition of MS health domains that are important in the definition of patient QoL.

Résumé:

Résumé: Objectif:

Le but de l'étude était de comparer la perception de l'état de santé en relation à la sclérose en plaques (SP) qu'ont les neurologues et les patients.

Méthode:

Des patients atteints de SP (n = 99) ont été recrutés dans six centres au Canada. À la suite d'une consultation avec leur neurologue, les patients estimaient la fréquence de leurs rechutes, évaluaient leur santé générale et leur qualité de vie (QV), révisaient des descriptions de 8 domaines de santé et choisissaient les trois plus importants pour eux et complétaient une évaluation de l'utilité par la méthode du pari standard (PS). Les neurologues utilisaient parallèlement les mêmes instruments pour évaluer l'état de santé de leurs patients. Les évaluations ont été comparées quant aux valeurs moyennes pairées des deux groupes et le degré de concordance exacte a été quantifié au moyen du coefficient intraclasse (CIC) et de l'analyse kappa, dont la valeur est de 1,0 lorsque la concordance est de 100%.

Résultats:

Il existait des différences significatives (p < 0,001) entre l'évaluation faite par le patient et celle faite par le neurologue pour le nombre de rechutes au cours de la dernière année (0,86 contre 0,4 respectivement), la QV (61,2 contre 69,7; score maximum = 100) et l'utilité (0,864 par rapport à 0.971). L'analyse CIC a montré un niveau de modéré à faible pour la concordance (0,56 pour la QV; 0,03 pour le PS). Il y avait peu de concordance dans l'identification des domaines de santé importants et les seules associations significatives étaient pour la douleur physique et le fonctionnement social (statistique kappa = 0,24, p = 0,026 pour les deux). Les neurologues ont identifié les domaines de fonctionnement physique comme étant importants alors que les patients mettaient plus d'emphase sur les domaines de santé mentale.

Conclusions:

Nous avons observé des discordances entre la perception de la SP qu'ont les neurologues par rapport à celle de leurs patients. Cette étude indique un besoin d'éducation chez les neurologues sur la reconnaissance des domaines de santé dans la SP qui sont importants dans la définition de la QV chez les patients.

Type
Original Article
Copyright
Copyright © The Canadian Journal of Neurological 2013

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