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

Baroin, Antoine; Chopard, Gilles; Siliman, Gaye; Michoudet, Clément; Vivot, Aurore; Vidal, Chrystelle; Mokadym, Hassna; Lavier, Annick; Berger, Ėric; Rumbach, L.; Rude, Nathalie

doi:10.1007/s11136-012-0334-0

Cited by 12 publications

(15 citation statements)

References 30 publications

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“…A better understanding of a chronic disease requires a comprehensive approach to take different components into account, especially when it comes to the quality of life as a multi-dimensional aspect (27). A previous attempt to develop measures related to the quality of life in MS resulted in the PERSEPP scale ("PERception de la Sclérose En Plaques et de ses Poussées") (28). Five dimensions of that scale target social support, relationship difficulties, fatigue, state of mind and associated sleep disorders, and time perspective.…”

Section: Discussionmentioning

confidence: 99%

Development and Validation of Fear of Relapse Scale for Relapsing-Remitting Multiple Sclerosis: Understanding Stressors in Patients

et al. 2020

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Chronic diseases are associated with patients' long-term stress and development of fear to things related to the source of stress. Better management of a patients' condition requires investigation of the underlying mechanisms that contribute to the process of development of chronic stress. Multiple Sclerosis (MS) is a debilitating chronic disease in most cases diagnosed after a relapse and characterized by the periodic occurrence of relapses in most patients. Due to the unpredictable course of the disease and relapses, patients with Relapsing-Remitting MS (RRMS) may deal with the stress of anticipation of relapse and its unpredictable consequences. The role of relapses and related stress on patients' quality of life has not been previously investigated. This study is the first effort to develop a self-report measure of Fear of Relapse (FoR) in patients with RRMS. Thirty-one items were extracted from in-depth clinical interviews with 33 RRMS patients to develop the preliminary version of the scale. Subsequently, 168 RRMS patients completed the questionnaire, the Intolerance of Uncertainty Scale (IUS) and Depression, Anxiety, and Stress Scale (DASS). Fifty-one patients completed the scale one more time a month later. Factor analysis revealed three components, and five items failed to load on any of them. To test the FoR's independence from similar measures, responses to 26 items were pooled once with DASS items and once with IUS items, and each time were subjected to confirmatory factor analysis (two-component solution). Despite significant correlations between FoR, DASS, and IUS Independent loadings of items belonging to FoR and DASS, and FoR and IUS revealed independence and unique contribution of FoR to the evaluation of patients. Cronbach's alpha for the 26-item version was 0.92. Test-retest reliability for total score was equal to 0.74. These findings provide preliminary evidence of the validity and reliability of the measure. This scale can help researchers and clinicians to have a more comprehensive understanding of patients'

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Section: Discussionmentioning

confidence: 99%

Development and Validation of Fear of Relapse Scale for Relapsing-Remitting Multiple Sclerosis: Understanding Stressors in Patients

et al. 2020

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“…Total score of PERCEPP questionnaire was significantly correlated with SF36 and QoL54 questionnaires that could show convergent validity that is consistent with Baroin et al ., study. [ 17 ] In their study, symptoms and treatment subscales were significantly different between cases with different EDSS scores while in this study, mean relationship difficulties and coping were significantly different. This could be indicative of impact of advanced disease on managing the personal and inter personal relations.…”

Section: Discussionmentioning

confidence: 46%

“…Their results also showed that ICC score of all items was above 0.7, which are consistent with our results. [ 17 ]…”

Section: Discussionmentioning

confidence: 99%

“…study, time perspective, treatment, and symptoms were significantly different between relapse and none relapse ones. [ 17 ] The different between symptom scale could show clinical differences between relapse and none relapse cases. On the other hand, disturbances and concerns met in the relapse PERIOD could explain the difference of time perspective scale.…”

Section: Discussionmentioning

confidence: 99%

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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

et al. 2016

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Background:Multiple sclerosis (MS) affects all aspects of patients. Recently, the “PERception de la Scle’rose En Plaques et de ses Pousse’es” (PERSEPP) scale was designed to assess MS-related relapse on quality of life (QoL). The aim of this study was to evaluate validity and reliability of Persian version of PERSEPP scale in Iranian patients with MS.Methods:Two-hundred eleven patients with relapsing-remitting form of the disease asked to fill the PERSEPP scale, MSQOL-54, and SF-36 questionnaires. Fifty cases filed the questionnaire 2 weeks later to assess reliability. The intraclass correlation coefficient (ICC) and Cronbach's alpha analysis were used.Results:Mean age and mean duration of disease were 32.2 ± 8.4 years and 6.5 ± 2.5 years, respectively. One hundred sixty-seven (79.1%) were female and 44 (20.9%) were male. Forty-one (19.4%) were in relapse phase of the disease. ICC score of all items was above 0.8. Cronbach's alpha of all items was above 0.8. The results show that the mean scores of four items (relationship difficulties, time perspective, and symptoms) were significantly different between cases in relapse and none relapse. Coping and relationship difficulties scores were significantly different between different expanded disability status scale groups. Pearson correlation score for QoL 54 and PERSEP calculated as r = 0.44, P < 0.001 and r = 0.66, P < 0.001 between SF36 and PERSEP.Conclusions:Persian version of PERCEPP questionnaire provides valid and reliable instrument to assess MS-related QoL.

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“…Given that relapse may have a negative impact on patients' QoL, we developed a scale named PERSEPP ("PERception de la Sclérose En Plaques et de ses Poussées") in order to assess the impact of MS relapses and the disease in everyday life of patients in terms of QoL (Baroin et al, 2010). Indeed, it seems necessary to evaluate this difficult period in patients' lives.…”

Section: Several Scales Have Already Been Validated In the Field Of Mmentioning

confidence: 99%

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

Baroin¹,

Mokadym²,

Chopard³

et al. 2012

International Journal of Neuroscience

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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.

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

Abstract: The PERSEPP scale has been validated and could be used in clinical trials and in daily practice. Additional studies will then complete the validation process.

Cited by 12 publications

References 30 publications

Development and Validation of Fear of Relapse Scale for Relapsing-Remitting Multiple Sclerosis: Understanding Stressors in Patients

Development and Validation of Fear of Relapse Scale for Relapsing-Remitting Multiple Sclerosis: Understanding Stressors in Patients

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

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

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