Establishing an Evaluation Scale for the Perception of Quality of Life Related to Relapsing-Remitting Forms of Multiple Sclerosis and Feasibility Study

Abstract

ABSTRACTRelapses are particularly stressful for patients with multiple sclerosis (MS). The impact of relapses on the quality of life (QoL) of patients has been described in the literature. Several QoL scales have already been validated for MS. However, none of them focuses specifically on how patients perceive relapse periods. The objective of this research was to establish a self-questionnaire to evaluate QoL related to MS and relapses: the PERSEPP scale. This scale is based on individual semidirective interviews with patients with a relapsing-remitting form of MS, health workers, and focus groups. The thematic content analysis of these interviews allowed us to obtain 574 items related to various dimensions of QoL. After selecting items in several stages, we drew up the PERSEPP scale with 37 items and five additional modules. A preliminary feasibility study was conducted with 40 patients to assess the PERSEPP scale. The feasibility study showed a good acceptability and a good understanding of the items of the PERSEPP scale. This article deals with the selection of items and the acceptability study. Psychometric validation of this scale, involving 305 patients, is currently in progress in various hospitals in France.