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2024-07-01

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cc-by-nc-nd (c) Elsevier B.V., 2024
Si us plau utilitzeu sempre aquest identificador per citar o enllaçar aquest document: https://hdl.handle.net/2445/220943

Pilot therapeutic education program in multiple system atrophy: Safety, quality of life and satisfaction from a national registry based longitudinal study

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https://doi.org/10.1016/j.parkreldis.2024.106993

Resum

Background: Therapeutic education programs are effective in several chronic conditions. However, evidence is lacking in multiple system atrophy (MSA). We aimed to assess efficacy and safety of a comprehensive therapeutic education program in people with MSA (PwMSA) and their caregivers. Methods: In this prospective longitudinal study we included 16 PwMSA and their main caregivers in 4 groups of 4 dyads each. The program consisted of eight 60-min interdisciplinary sessions: introduction, orthostatic hypotension, speech therapy, gait and respiratory physiotherapy, psychological support, urinary dysfunction, occupational therapy/social work. UMSARS, NMSS, PDQ39, EQ5 and Zarit scales were administered at baseline and 6 months later. After each session participants filled-out a modified EduPark satisfaction questionnaire and a Likert scale. Educational material was generated for each session after suggestions by participants. Results: At baseline PwMSA and caregivers were comparable in age and sex, with significant correlation between UMSARS-IV (disability) and PDQ39 (quality of life). Adherence to sessions was of 94,92 %. Total modified EduPark scores and Likert scales did not differ in PwMSA vs. caregivers, mild-moderate vs. severe-advanced cases or between genders. The significant difference in satisfaction across sessions (p = 0.03) was driven by higher scores in speech, respiratory and occupational therapy sessions. Longitudinally there was no significant worsening in any scale, nor a significant increase post-vs. pre-program in the number of consultations. Conclusions: The healthcare education program in MSA was feasible, satisfactory, and safe for patients and caregivers. The educational material of the program is being forwarded to incident MSA cases attending our clinic.

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Programes de prevenció educatius, Cuidadors, Infermeres

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Prevention education programs, Caregivers, Nurses

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Articles publicats en revistes (Medicina)
Articles publicats en revistes (IDIBAPS: Institut d'investigacions Biomèdiques August Pi i Sunyer)
Articles publicats en revistes (Institut de Neurociències (UBNeuro))

Citació

CÁMARA, Ana, COMPTA, Yaroslau, BAIXAULI PUIG, Montserrat, MARAGALL, Laura, PÉREZ SORIANO, Alexandra, MONTAGUT COLOMER, Núria, AHUIR, Maribel, LUDEÑA, Emma, PERI CUSÍ, Lluís, FERNÁNDEZ, Noemí, VILLOTE, Susana, LÓPEZ DE LOS REYES, Juan carlos, NAVARRO OTANO, Judith, ZARO, Idoia, MUÑOZ, Esteban, BUONGIORNO, Maria teresa, CABALLOL, Núria, PONT SUNYER, Claustre, PUENTE, Víctor, GIRALDO, Darly m., VALLDEORIOLA SERRA, Francesc, LOMBRAÑA MENCIA, Maria, MARTÍ DOMÈNECH, Ma. josep. Pilot therapeutic education program in multiple system atrophy: Safety, quality of life and satisfaction from a national registry based longitudinal study. _Parkinsonism & Related Disorders_. 2024. Vol. 124. [consulta: 21 de gener de 2026]. ISSN: 1353-8020. [Disponible a: https://hdl.handle.net/2445/220943]

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