Validation of a new quality of life scale related to multiple sclerosis and relapses

Antoine Baroin1, Gilles Chopard, Gaye Siliman

  • 1Department of Neurology, Besançon University Hospital, Bvd Fleming, 25030, Besançon Cedex, France, abaroin@univ-fcomte.fr.

Abstract

Insights

The PERSEPP scale effectively measures quality of life in multiple sclerosis (MS) patients with relapsing-remitting forms. This validated tool assesses social support, fatigue, and coping, aiding clinical trials and daily care.

Area of Science:

  • Neurology
  • Psychometrics

Background:

  • Multiple sclerosis (MS) significantly impacts patient quality of life (QoL).
  • Fear of relapses and patient experiences during relapses are critical care considerations.

Purpose of the Study:

  • To validate the PERSEPP scale (PERception de la Sclérose En Plaques et de ses Poussées) for evaluating QoL in relapsing-remitting MS.
  • To establish the psychometric properties of the PERSEPP scale.

Main Methods:

  • Multicenter study involving patients with relapsing-remitting MS.
  • Validation criteria included acceptability, construct validity, and reliability (internal consistency, test-retest).
  • Analysis of 305 patient responses to refine the scale from 112 to 66 items.

Main Results:

  • The 66-item PERSEPP scale demonstrated good acceptability.
  • Five core dimensions (social support, relationship difficulties, fatigue, state of mind/sleep, time perspective) and three modules (coping, symptoms, treatment) were identified.
  • Reliability was confirmed with acceptable internal consistency (Cronbach's alpha ranging from 0.60 to 0.92) and test-retest reliability (ICC between 0.72 and 0.92).

Conclusions:

  • The PERSEPP scale is validated for assessing QoL in relapsing-remitting MS.
  • The scale is suitable for use in clinical trials and routine clinical practice.
  • Further studies are planned to complete the validation process.