Territorial Implementation and Evaluation of a Multiple Sclerosis Expe
Territorial Implementation and Evaluation of an Expert Patient Program to Improve the Empowerment and Quality of Life of People With Multiple Sclerosis
What it found
A paper reports the results; we have not read it yet. See Papers below.
What was tested
Treatment tested
- Multiple Sclerosis Expert Patient Program of Catalonia
What it measured
Main measures
Number of groups constituted in each unit compared to the number of groups planned.
18 months from recruitment
Other measures (8)
Change in Quality of life measured by the Multiple Sclerosis Quality of Life 54 items (MSQOL54) from beginning of the intervention to end of intervention (9 weeks) and compared to 6 and 12 months after the end of the intervention.
18 months from recruitment
Bladder, bowel and sexual functionQuality of life (reported by participants)Change in emotional impact measured by the Hospital Anxiety and Depression Scale (HADS) from beginning of the intervention to end of intervention (9 weeks) and compared to 6 and 12 months after the end of the intervention.
18 months from recruitment
Mood and sleepChange in fatigue management measured by the Fatigue Severity Scale (FSS) from beginning of the intervention to end of intervention (9 weeks) and compared to 6 and 12 months after the end of the intervention.
18 months from recruitment
FatigueChange in patient activation and engagement measured by the 13-item Patient Activation Measure (PAM-13) from beginning of the intervention to end of intervention (9 weeks) and compared to 6 and 12 months after the end of the intervention.
18 months from recruitment
Change in patient knowledge measured by the PPEC specific questionnaire about the MS knowledge from beginning of the intervention to end of intervention (9 weeks) and compared to 6 and 12 months after the end of the intervention.
18 months from recruitment
Change in individuals habits and lifestyles measured by the PPEC specific questionnaire about the habits and lifestyles from beginning of the intervention to end of intervention (9 weeks) and compared to 6 and 12 months after the end of the intervention.
18 months from recruitment
Change in the use of the care services from 1 year pre-intervention to end of intervention (9 weeks) compared to end of intervention (9 weeks) and 12 months after the end of the intervention.
18 months from recruitment
Change in Patient Reported Experience measured from the end of intervention (9 weeks) to 12 months after the end of the intervention.
18 months from recruitment
Quality of life (reported by participants)
Who could take part
MS (type not specified) · 18 and over
Show the full criteria
Inclusion criteria
* Expert Patient: diagnosis of MS, possibility to attend the sessions and signing of the informed consent. * Participants: Expert Patient inclusion criteria and need for support for self-management or detection of lack of knowledge regarding MS.
Exclusion criteria
* Expert Patient: not to speak or write Spanish or Catalan, healthcare or educational professional, having aphasia or an auditory disorder that prevents interaction with the group; -1.5 SD score of the population mean in one of the 3 subtests of The International Brief Cognitive Assessment for Multiple Sclerosis (BICAMS), score above 11/21 on The Hospital Anxiety and Depression Scale (HADS), and psychopathological comorbidity or diagnosed mental disorder that prevents proper interaction with the group. * Participants: Expert Patient exclusion criteria without any restriction for healthcare or educational professionals.
As registered. Criteria can change, so ask the trial team or your neurologist.
About this trial
In the sponsor's words
Introduction: Multiple sclerosis (MS) affects about 50,000 people in Spain, so it is essential to implement health interventions that meet their needs and demands. Expert patient programs facilitate health-related empowerment through peer learning. From a study of focus groups that identified the characteristics and contents of an expert patient program for MS and the ongoing pilot tests, the need for implementation in the different reference units of Catalonia is established. Hypothesis: The territorial implementation in Catalonia of a Catalonia® Expert Patient Program for people with MS (PPEC-EM) based on peer learning will improve the quality of life, knowledge and self-management related to the health process of the participants. Objective: To deploy and evaluate the territorial implementation of a PPEC-EM based on peer learning regarding the quality of life, knowledge and self-management related to the health process of the participants. Methodology: Pre-post intervention multicenter clinical study. This study will begin after the approval of the respective Ethics Committees. The deployment will consist of 12 groups of patients (2 per unit): 6 groups with people with recurrent MS and 6 groups with people with progressive MS. A patient with MS previously trained by a team of health professionals will lead 9 educational group sessions (1 weekly session for 9 weeks) with 12 people with the same disease in order to improve the impact and self-management according to the health process. The main variable is the improvement of the quality of life and the secondary ones are the emotional impact, activation of the person, knowledge on the MS, fatigue, habits and lifestyles, use of the sanitary services and program-related experience of participants. All variables will be measured before and after the intervention and after 6 and 12 months. A pre-post comparability analysis will be developed in relation to the variables studied.
Papers
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History
Started
Nov 2021
Main results due
Dec 2023
Finished
Jul 2024