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Within the framework of improving the quality of life for patients with Multiple Sclerosis (MS), this prospective and descriptive study aims to evaluate the effectiveness of a therapeutic education program. The program, designed specifically for MS patients, includes individual sessions to identify needs, fears, and questions, followed by targeted educational workshops. These workshops address understanding the disease, managing bladder and sphincter issues, fatigue management, and psychological well-being, relying on a multidisciplinary team including physiotherapists, neurologists, psychologists, urologists, occupational therapists, nurses, and nutritionists. The primary goal is to assess the impact of this program on the quality of life of patients, measured by the MSQOL-54 questionnaire, with secondary measures such as the Urinary Handicap Scale (M.H.U). Fifty patients will be recruited from the Department of Physical Medicine and Rehabilitation at Rabat University Hospital, Morocco, with follow-ups planned at 3 and 6 months. This program aims to provide patients with the knowledge and skills necessary for better management of their condition, thereby promoting active participation in treatment and a significant improvement in their quality of life.
This is a prospective, descriptive, and analytical study without a control group, aiming to measure the impact of a specialized therapeutic education program on the quality of life in individuals diagnosed with multiple sclerosis.
The educational program includes individual sessions to assess patient needs, followed by workshops facilitated by a multidisciplinary team. These workshops are designed to provide comprehensive support and education on various aspects of living with multiple sclerosis.
Understanding the Disease: This workshop will provide participants with a detailed understanding of multiple sclerosis, including its etiology, pathophysiology, and common symptoms. Participants will learn about the importance of early diagnosis, disease progression, and treatment options available.
Managing Bladder and Sphincter Issues: Bladder and sphincter dysfunction are common symptoms of multiple sclerosis that significantly impact quality of life. This workshop will focus on strategies for managing urinary symptoms, including bladder retraining, pelvic floor exercises, and the use of assistive devices. Participants will also receive guidance on managing bowel dysfunction and preventing complications such as urinary tract infections.
Fatigue Management: Fatigue is a pervasive and debilitating symptom of multiple sclerosis. This workshop will explore the causes of fatigue in MS and provide practical strategies for conserving energy and managing daily activities. Participants will learn about pacing techniques, energy-saving devices, and the importance of restorative sleep.
Psychological Well-being: Living with multiple sclerosis can have a significant impact on mental health and emotional well-being. This workshop will address coping strategies for managing stress, anxiety, and depression associated with the disease. Participants will learn relaxation techniques, mindfulness exercises, and how to access support services and community resources.
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| Label | Type | Description | Intervention Names |
|---|---|---|---|
| Therapeutic Education Program for Multiple Sclerosis Patients | Experimental | Participants in this arm will receive a comprehensive therapeutic education program designed specifically for individuals diagnosed with multiple sclerosis. The program includes individual assessments to identify patient needs and concerns, followed by targeted educational workshops. These workshops cover a wide range of topics, including disease understanding, bladder and sphincter management, fatigue management, and psychological well-being. The intervention is delivered by a multidisciplinary team, including physiotherapists, neurologists, psychologists, urologists, occupational therapists, nurses, and nutritionists, aiming to improve participants' quality of life by enhancing their disease management skills and overall well-being. |
|
| Name | Type | Description | Arm Group Labels | Other Names |
|---|---|---|---|---|
| Multiple Sclerosis Therapeutic Education Program | Behavioral | The "MS Self-Management Education Workshop" is designed as an integral part of our therapeutic education program targeting individuals diagnosed with multiple sclerosis (MS). This intervention focuses on empowering participants with knowledge and skills necessary for effective self-management of their condition. The workshop includes interactive sessions that cover a range of topics critical for MS patients, such as: Understanding the nature and progression of MS, highlighting the importance of early symptom recognition and management strategies. Techniques for managing common MS symptoms, including fatigue, mobility issues, and cognitive challenges, with practical advice on daily living adaptations. Guidance on medication management, including the use of disease-modifying therapies and managing side effects. Strategies for emotional well-being, including coping mechanisms for dealing with the psychological impact of MS, stress management, and fostering resilience. |
| Measure | Description | Time Frame |
|---|---|---|
| Multiple Sclerosis Quality of Life-54 (MSQOL-54) | The MSQOL-54 is a multidimensional questionnaire specifically designed to assess the health-related quality of life of patients with multiple sclerosis. It comprises 54 items, each rated from 0 to 100, grouped into 12 dimensions with two independent questions. These dimensions include physical activity, limitations due to physical health, limitations due to emotional state, pain, emotional well-being, energy, perceived health, social function, cognitive function, distress, sexual function, and general well-being. | The MSQOL-54 will be administered at the time of inclusion, 3 months after the initiation of the therapeutic education program, and again at 6 months after the initiation of the program. |
| Measure | Description | Time Frame |
|---|---|---|
| Measure of Urinary Handicap scale (M.H.U) | The Measure of Urinary Handicap scale (M.H.U) is an assessment tool designed to measure the impact of urinary symptoms on individuals' quality of life. It typically consists of several questions that explore the frequency, severity, and psychosocial impact of urinary symptoms on a person's daily life. The responses to these questions allow for the generation of a score that reflects the degree of handicap or discomfort experienced by the patient due to their urinary symptoms. |
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Inclusion Criteria:
Exclusion Criteria:
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| Name | Role | Phone | Extension | |
|---|---|---|---|---|
| Iman AKHRIF, Secondary education | Contact | 0696512426 | 10000 | imanakhrif6@gmail.com |
| SARA SKALLI, Secondary education | Contact | 0661504251 | 10000 | dr.skalli.sara@gmail.com |
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| PubMed Identifier | Type | Citation | Retractions |
|---|---|---|---|
| 38061315 | Background | Lotfi R, El Kardoudi A, Chigr F. Multiple sclerosis in Morocco: Epidemiological, clinical, and therapeutic profile. Mult Scler Relat Disord. 2024 Jan;81:105347. doi: 10.1016/j.msard.2023.105347. Epub 2023 Dec 2. | |
| 23849771 | Background | Ouadghiri S, El Alaoui Toussi K, Brick C, Ait Benhaddou EH, Benseffaj N, Benomar A, El Yahyaoui M, Essakalli M. Genetic factors and multiple sclerosis in the Moroccan population: a role for HLA class II. Pathol Biol (Paris). 2013 Dec;61(6):259-63. doi: 10.1016/j.patbio.2013.05.002. Epub 2013 Jul 9. |
| Label | URL |
|---|---|
| NATIONAL INSTITUTE OF HEALTH AND MEDICAL RESEARCH (INSERM). Sclérose en plaques (SEP) : Une recherche active pour améliorer la prise en charge des patients | View source |
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Study Objective: Develop and evaluate a structured educational program for MS patients to enhance quality of life. Design: Prospective study assessing program impact without a control group. Recruitment: From Rabat University Hospital's PRM and Neurology sessions. Intervention: Individual needs assessment followed by multidisciplinary-led educational workshops. Assessment: Patients evaluated at baseline, 3 and 6 months using MSQOL-54 and M.H.U scale. Outcome Measures: Primary: MSQOL-54 for quality of life. Secondary: M.H.U scale for urinary symptoms. Sample Size: Fifty patients recruited, considering 10% follow-up loss rate. Follow-up: Patients can withdraw at any time. Statistical Analysis: Collaboration with Epidemiology and Clinical Research Laboratory.
Day 0 (Baseline Assessment):
Month 3 (3-Month Follow-up)
Month 6 (6-Month Follow-up):
Inclusion: Age 18+, confirmed MS diagnosis, ability to provide consent, and available for program and assessments. Exclusion: Cognitive impairment, refusal, significant visual impairment.
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| ID | Term |
|---|---|
| D009103 | Multiple Sclerosis |
| ID | Term |
|---|---|
| D020278 | Demyelinating Autoimmune Diseases, CNS |
| D020274 | Autoimmune Diseases of the Nervous System |
| D009422 | Nervous System Diseases |
| D003711 | Demyelinating Diseases |
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This study is an observational, descriptive, and analytical research without a control group, aimed at assessing the impact of a specialized therapeutic education program on the quality of life of patients with multiple sclerosis. Participants will receive individual sessions to assess their needs, followed by targeted educational workshops on various aspects of disease management. The effectiveness of the program will be primarily measured using the Multiple Sclerosis Quality of Life-54 (MSQOL-54) questionnaire, with secondary outcomes assessed by the Urinary Handicap Measure (M.H.U) scale.
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| The M.H.U will be administered at the time of inclusion, 3 months after the initiation of the therapeutic education program, and again at 6 months after the initiation of the program. |
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| D001327 | Autoimmune Diseases |
| D007154 | Immune System Diseases |