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. 2021 Mar 2:12:637413.
doi: 10.3389/fpsyg.2021.637413. eCollection 2021.

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

Oscar Martínez  1 , Imanol Amayra  1 , Juan Francisco López-Paz  1 , Esther Lázaro  1 , Patricia Caballero  1 , Irune García  1 , Alicia Aurora Rodríguez  1 , Maitane García  1 , Paula María Luna  1 , Paula Pérez-Núñez  1 , Jaume Barrera  1 , Nicole Passi  1 , Sarah Berrocoso  1 , Manuel Pérez  1 , Mohammad Al-Rashaida  1
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Effects of Teleassistance on the Quality of Life of People With Rare Neuromuscular Diseases According to Their Degree of Disability

Oscar Martínez et al. Front Psychol. .

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.

Keywords: disability; psychosocial program; quality of life; rare neuromuscular diseases; teleassistance; videoconferencing.

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Conflict of interest statement

The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.

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