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

Frontiers in Psychology

article

Oscar Martínez¹  Jaume Barrera¹  Nicole Passi¹  Sarah Berrocoso¹  Manuel Pérez¹  Mohammad Al-Rashaida¹  Juan Francisco López-Paz¹  Esther Lázaro¹  Patricia Caballero¹  Irune García¹  Alicia Aurora Rodríguez¹  Maitane García¹  Paula María Luna¹  Paula Pérez-Núñez¹ 

[1] Department of Personality, Faculty of Psychology and Education, University of Deusto

关键词: rare neuromuscular diseases;    teleassistance;    videoconferencing;    psychosocial program;    quality of life;    disability;   

DOI  :  10.3389/fpsyg.2021.637413

学科分类：社会科学、人文和艺术（综合）

来源: Frontiers

【 摘 要 】

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.

【 授权许可】

CC BY