An expert patient program to improve the empowerment and quality of life of people with multiple sclerosis: protocol for a multicenter pre-post intervention study.

Introduction: Multiple sclerosis (MS) causes a progressive disability, which substantially impacts the quality of life (QoL). Health interventions that meet the needs and demands of people with MS are essential to minimize QoL impairment. Expert patient programs (EPPs) facilitate health-related empowerment through peer learning. Based on a previous focus group study, we designed an EPP for MS coordinated by nursing professionals for implementation in the different MS reference units of Catalonia (Southwestern Europe). This study aims to evaluate the effects on quality of life, disease-related knowledge, and self-management related to the health process of the participants of the Expert Patient Program Catalonia™ for people with multiple sclerosis (EPPC-MS). Methods: Pre-post intervention multicenter clinical study involving 12 groups of 12 participants: six groups including relapsing and six groups including progressive MS patients, with 144 participants from 7 MS reference units from all over Catalonia, organized in six teams. The intervention will consist of nine telematic learning peer-led sessions (one weekly session). The expert patient (EP) leading the sessions will be an individual with MS with disease-related knowledge, who will be further trained by nurses to lead the sessions. Study variables will be measured before and immediately after the intervention and 6 and 12 months after the end of the sessions and will include: QoL, emotional impact, activation of the person, MS-related knowledge, fatigue, habits and lifestyles, health services use, and program-related experience. Baseline characteristics considered will be sociodemographic data, date of MS diagnosis and type, family history, and treatment characteristics. Variables related to disease follow-up will be new relapses and characteristics and changes in the ongoing treatment. The number of sessions attended will also be collected. Study variables will be analyzed using a pre-post comparison. Discussion: Peer-led learning programs led by EP help empower people with chronic conditions and offer them tools to improve their autonomy and QoL. This study's intervention will be performed remotely, offering advantages both for people with chronic conditions and the healthcare system regarding the facilitation of family and work conciliation, saving time, simplifying attendance to meetings, lowering costs, and using fewer material resources. Trial registration: NCT04988880 on September 22, 2021.

An Expert Patient Program as a Tool to Empower People With Multiple Sclerosis.

BACKGROUND: Multiple sclerosis (MS) affects approximately 50 000 people in Spain, so it is essential to implement health interventions that respond to their needs and demands. Expert patient programs may facilitate health-related empowerment through peer learning, but their particular features need to be tailored to MS. METHODS: Qualitative research was used to examine the needs and demands of people with MS in relation to the management of MS with the aim of designing a specific program to enable empowerment. Data gathered from focus group interviews were coded and grouped using thematic analysis with independent peer review. RESULTS: The identified needs and demands focused on improving MS knowledge and acquiring the skills to promote self-management and autonomy. An MS expert patient program should address the impact of MS, its integrated treatment, and health promotion. The program's design should follow an open script with small groups and the support of healthcare professionals. Participants showing a need for help and an absence of comorbidities that prevent interaction should be included. Expert patients should have a positive outlook on their health, experience-based knowledge, and leadership and communication skills. The identified potential benefits were an improvement in knowledge, quality of life, and the normalization of the patient's health situation. CONCLUSION: The needs and demands of people with MS focused on enhancing knowledge about all aspects of the disease and on acquiring skills to promote self-management, autonomy, and empowerment. Program design and content were identified enabling determination of the characteristics needed to resolve these issues and develop an expert patient program for people with MS in Spain.

Determinants of health literacy in the general population: results of the Catalan health survey.

BACKGROUND: Health Literacy (HL) is the knowledge and competence to access, understand, appraise, and apply health information for health judgment. We analyze for the first time HL level of Catalonia's population. Our objective was to assess HL of population in our area and to identify social determinants of HL in order to improve the strategies of the Healthcare Plan, aimed at establishing a person-centered system and reducing social inequalities in health. METHODS: This was a cross-sectional study based on the Health Survey for Catalonia (ESCA, Enquesta de Salut de Catalunya), which included the 16 items of the European Health Literacy Survey Questionnaire (HLS-EU-Q16). The statements in the questionnaire cover three different health literacy domains: Health Care, Disease Prevention, and Health Promotion. HL was categorized in three levels: Sufficient, Problematic and Inadequate. Chi-square tests were performed to compare the percentages of subjects with adequate or inadequate HL across sociodemographic and health-related variables. Variables showing significant differences were included in a stepwise logistic regression to predict inadequate HL level. RESULTS: The questionnaire was administered to 2433 subjects aged between 15 and 98 years old (mean of 45.9 years, SD 18.0). Overall, 2059 subjects (84.6%) showed sufficient HL, 250 (10.3%) inadequate HL, and 124 (5.1%) problematic HL, with no significant differences between men and women (p = 0.070). A logistic regression analysis showed that low health literacy is associated with a lower level of education (OR 2.08, CI 95% 1.32-3.28, p = 0.002), low socioeconomic status (OR 2.11, CI 95% 1.42-3.15, p <  0.001) and a physical limitation to perform everyday activities (OR 2.50, CI 95% 1.34-4.66, p = 0.004). We also found a more modest association with low physical activity, having a self-perceived chronic disorder and performing preventive activities. CONCLUSIONS: Catalonia has a high percentage of subjects with sufficient HL. Education level, socioeconomic status and physical limitations were the factors with the strongest contribution to inadequate or problematic health literacy. Although these results are likely to be country-specific, the factors identified will allow policymakers of areas with similar socioeconomic profiles to identify groups with high risk of problematic or inadequate HL, which is essential for a successful patient-centered model of care.