Effects of teleassistance on the quality of life of people with rare neuromuscular diseases according to their degree of disability

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dc.contributor.authorMartínez, Óscar
dc.contributor.authorAmayra Caro, Imanol
dc.contributor.authorLópez Paz, Juan Francisco
dc.contributor.authorLázaro Pérez, Esther
dc.contributor.authorCaballero, Patricia
dc.contributor.authorGarcía Urquiza, Irune
dc.contributor.authorRodríguez Bermejo, Alicia Aurora
dc.contributor.authorGarcía Martín, Maitane
dc.contributor.authorLuna Ovalle, Paula
dc.contributor.authorPérez Núñez, Paula
dc.contributor.authorBarrera, Jaume
dc.contributor.authorPassi, Nicole
dc.contributor.authorBerrocoso Cascallana, Sarah
dc.contributor.authorPérez Álvarez, Manuel
dc.contributor.authorAl-Rashaida, Mohammad Ali Hussein
dc.date.accessioned2024-11-20T15:18:50Z
dc.date.available2024-11-20T15:18:50Z
dc.date.issued2021-03
dc.date.updated2024-11-20T15:18:50Z
dc.description.abstractRare neuromuscular diseases (RNMDs) are a group of pathologies characterized by a progressive loss of muscular strength, atrophy, fatigue, and other muscle-related symptoms, which affect quality of life (QoL) levels. The low prevalence, high geographical dispersion and disability of these individuals involve difficulties in accessing health and social care services. Teleassistance is presented as a useful tool to perform psychosocial interventions in these situations. The main aim of this research is to assess the effects of a teleassistance psychosocial program on the QoL levels of people with RNMDs who have different levels of disability. A sample of 73 participants was divided into an experimental group (n = 40), which participated in the intervention, and a control wait list group (n = 33). QoL was evaluated through the SIP and the SF-36, and disability through the WHO-DAS II. The participants with a moderate to severe level of disability were those who most benefited from the intervention. The results also revealed that the psychosocial teleassistance program was suitable to improve physical and psychosocial aspects of people suffering from a rare neuromuscular disease with a moderate level of disability, but just psychosocial aspects in those with a severe level of disability.en
dc.identifier.citationMartínez, O., Amayra, I., López-Paz, J. F., Lázaro, E., Caballero, P., García, I., Rodríguez, A. A., García, M., Luna, P. M., Pérez-Núñez, P., Barrera, J., Passi, N., Berrocoso, S., Pérez, M., & Al-Rashaida, M. (2021). Effects of Teleassistance on the Quality of Life of People With Rare Neuromuscular Diseases According to Their Degree of Disability. Frontiers in Psychology, 12. https://doi.org/10.3389/FPSYG.2021.637413
dc.identifier.doi10.3389/FPSYG.2021.637413
dc.identifier.eissn1664-1078
dc.identifier.urihttp://hdl.handle.net/20.500.14454/2020
dc.language.isoeng
dc.publisherFrontiers Media S.A.
dc.rights© 2021 Martínez, Amayra, López-Paz, Lázaro, Caballero, García, Rodríguez, García, Luna, Pérez-Núñez, Barrera, Passi, Berrocoso, Pérez and Al-Rashaida
dc.subject.otherDisability
dc.subject.otherPsychosocial program
dc.subject.otherQuality of life
dc.subject.otherRare neuromuscular diseases
dc.subject.otherTeleassistance
dc.subject.otherVideoconferencing
dc.titleEffects of teleassistance on the quality of life of people with rare neuromuscular diseases according to their degree of disabilityen
dc.typejournal article
dcterms.accessRightsopen access
oaire.citation.titleFrontiers in Psychology
oaire.citation.volume12
oaire.licenseConditionhttps://creativecommons.org/licenses/by/4.0/
oaire.versionVoR
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