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

Abstract

Relapses 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.

The schizophrenia coping oral health profile. Development and feasibility

“…To capture the essential items of the coping concept in OHrQOL, our group explored comments made by patients and HPs in psychological and adaptive processes in OHrQOL [ 32 , 41 ]. The ability of PWS to discuss their condition remains an issue of debate in the psychiatric community [ 42 ], which can explain why most of the scales to explore perception in quality of life for PWS were generated either from the literature or expert opinions [ 42 ].…”

“…The second step was a feasibility study involving statistical analysis to test the acceptability of the Schizophrenia Coping Oral Health Profile (SCOOHP). The design of this study was used in a previous study by our team [ 28 ].…”

“…The psychologist used an interview guide covering several specific areas of OHrQOL for PWS. These guides were based on the literature, our recent studies [ 31 , 32 , 33 , 34 ], and consensus meetings with experts from the work group (WG) (one dental researcher, one psychosociology researcher, one methodologist, one nursing researcher, and one PWS). The goal of qualitative research is to provide in-depth understanding; therefore, it targets a specific group or type of individual.…”

Validity and reliability of the persian version of the PEReption de la scle′rose en plaques et de ses pousse′es questionnaire evaluating multiple sclerosis-related quality of life

“…Recently, the “PERception de la Scle’rose En Plaques et de ses Pousse’es” (PERSEPP) scale was designed specifically for RR MS patients to assess MS-related relapse on QoL. [ 13 ] Different aspects such as social support, difficulties with social relationships, fatigue, state of mind and sleep, time perspective, coping, symptoms, and perception of treatment are included in the PERSEPP scale. The aim of this study was to evaluate validity and reliability of Persian version of PERSEPP scale in Iranian patients with MS.…”