Movement disorders clinical practice · 2025
Development and Feasibility of a Mixed Virtual and in-Presence Therapeutic Education Program for Early Multiple System Atrophy Patients.
СтатьяНаблюдательное исследованиеНазвание и аннотация: Перевод пока не подготовлен
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Fabbri Margherita, Harroch Estelle, Camgrand Eva, Bastos Paulo André Dias, Meissner Wassilios G, Llorca Marie Christine, Travere Cecile, Kermorgant Marc, Rascol Olivier, Leung Clémence, Roy Aude, Pavy-Le-Traon Anne, Mohara Christine, Scotto D'Apollonia Charlotte, Bendetowicz David, Foubert-Samier Alexandra, Brefel-Courbon Christine
Аннотация
BACKGROUND: Multiple system atrophy (MSA) is a relentlessly progressive neurodegenerative disorder with no cure. While therapeutic education programs (TEPs) benefit many chronic conditions, data in MSA are limited.
OBJECTIVES: To assess the feasibility and satisfaction of a mixed in-person/virtual TEP for early-stage MSA patients and caregivers.
METHODS: A six-module, self-paced TEP was co-developed over 2 years by MSA healthcare professionals, patients, and education experts. A prospective pilot study enrolled recently diagnosed MSA patients (≤12 months) and caregivers. Primary outcomes were recruitment and retention rates. Secondary outcomes included disease progression (UMSARS I-II), health-related quality of life (Hr-QoL), compared to matched controls not enrolled in the TEP and patients' satisfaction.
RESULTS: Fifteen patient-caregiver pairs were enrolled. Recruitment and retention rates were 44% and 86%, respectively; 78% of modules were completed (least consulted was disease progression). Disease severity and Hr-QoL worsened over 12 months, with no significant differences versus controls. Overall, 90% of participants were satisfied or very satisfied.
CONCLUSIONS: Our pilot study shows that a mixed TEP for MSA patients and familial caregivers is feasible and able to engage them over time.
OBJECTIVES: To assess the feasibility and satisfaction of a mixed in-person/virtual TEP for early-stage MSA patients and caregivers.
METHODS: A six-module, self-paced TEP was co-developed over 2 years by MSA healthcare professionals, patients, and education experts. A prospective pilot study enrolled recently diagnosed MSA patients (≤12 months) and caregivers. Primary outcomes were recruitment and retention rates. Secondary outcomes included disease progression (UMSARS I-II), health-related quality of life (Hr-QoL), compared to matched controls not enrolled in the TEP and patients' satisfaction.
RESULTS: Fifteen patient-caregiver pairs were enrolled. Recruitment and retention rates were 44% and 86%, respectively; 78% of modules were completed (least consulted was disease progression). Disease severity and Hr-QoL worsened over 12 months, with no significant differences versus controls. Overall, 90% of participants were satisfied or very satisfied.
CONCLUSIONS: Our pilot study shows that a mixed TEP for MSA patients and familial caregivers is feasible and able to engage them over time.
Предметные рубрики MeSH
Feasibility StudiesPatient SatisfactionPatient Education as TopicEducation, DistanceProspective StudiesPilot ProjectsPatient Acceptance of Health CareDisease ProgressionQuality of LifeOutcome Assessment, Health CareSeverity of Illness IndexCase-Control StudiesMultiple System AtrophyHumansMaleFemaleMiddle AgedAgedCaregivers