Effects of Teleassistance on the Quality of Life of People With Rare Neuromuscular Diseases According to Their Degree of Disability

Oscar Martínez, Imanol Amayra, Juan Francisco López-Paz, Esther Lázaro, Patricia Caballero, Irune García, Alicia Aurora Rodríguez, Maitane García, Paula María Luna, Paula Pérez-Núñez, Jaume Barrera, Nicole Passi, Sarah Berrocoso, Manuel Pérez, Mohammad Al-Rashaida

Research output: Contribution to journalArticlepeer-review

5 Citations (Scopus)

Abstract

Rare 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.

Original languageEnglish
Article number637413
JournalFrontiers in Psychology
Volume12
DOIs
Publication statusPublished - Mar 2 2021
Externally publishedYes

Keywords

  • disability
  • psychosocial program
  • quality of life
  • rare neuromuscular diseases
  • teleassistance
  • videoconferencing

ASJC Scopus subject areas

  • General Psychology

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