title: Effectiveness of teleassistance at improving quality of life in people with neuromuscular diseases.
abstract: Rare neuromuscular diseases (NDs) are a group of inherited or acquired neurological pathologies affecting the muscles and the nervous system. Their low prevalence and high geographical dispersion can cause isolation and difficulties in social interaction between affected equals. New technologies, such as videoconferencing, offer a complementary option for improving the health of this population. The purpose of this study was to assess the effectiveness of a teleassistance program at improving health-related quality of life (HRQoL) through social interaction in adults with NDs. The sample consisted of 45 participants affected by rare NDs. Twenty-four participants were assigned to the experimental group (EG), which participated in the videoconferencing sessions, and 21 to the control group. Three questionnaires were administered: WHO-DAS II, Sickness Impact Profile, and SF-36 Health Survey. Effectiveness was assessed by a pre-post design. An online psychosocial program was applied over three-month period. Data revealed an improvement of the EG in psychosocial variables, e.g. "Getting along with people" (z = -2.289, r = -.47, p ≤ .05) or "Psychosocial Domain" (z = -2.404, r = -.49, p ≤ .05), and in physical variables, e.g. "Life activities" (z = -2.844, r = -.58, p ≤ .05). Social interaction appeared as a relevant factor at improving HRQoL levels. High levels of satisfaction about the teleassistance program were reported.
authors.affiliation: Universidad de Deusto (Spain).
authors.forename: Oscar
authors.initials: O
authors.lastname: Martínez
authors.affiliation: Universidad de Deusto (Spain).
authors.forename: Amaia
authors.initials: A
authors.lastname: Jometón
authors.affiliation: Universidad de Deusto (Spain).
authors.forename: Manuel
authors.initials: M
authors.lastname: Pérez
authors.affiliation: Universidad de Deusto (Spain).
authors.forename: Esther
authors.initials: E
authors.lastname: Lázaro
authors.affiliation: Universidad de Deusto (Spain).
authors.forename: Imanol
authors.initials: I
authors.lastname: Amayra
authors.affiliation: Universidad de Deusto (Spain).
authors.forename: Juan Francisco
authors.initials: JF
authors.lastname: López-Paz
authors.affiliation: Universidad de Deusto (Spain).
authors.forename: Mireia
authors.initials: M
authors.lastname: Oliva
authors.affiliation: Universidad de Deusto (Spain).
authors.forename: Pamela
authors.initials: P
authors.lastname: Parada
authors.affiliation: Universidad de Deusto (Spain).
authors.forename: Sarah
authors.initials: S
authors.lastname: Berrocoso
authors.affiliation: Universidad de Deusto (Spain).
authors.forename: Andrea
authors.initials: A
authors.lastname: Iglesias
authors.affiliation: Universidad de Deusto (Spain).
authors.forename: Patricia
authors.initials: P
authors.lastname: Caballero
authors.affiliation: Universidad de Deusto (Spain).
authors.forename: Luis
authors.initials: L
authors.lastname: De Nicolás Y Martínez
authors.affiliation: Hospital de Cruces (Spain).
authors.forename: José Eulalio
authors.initials: JE
authors.lastname: Bárcena
mesh_terms: D000328:Adult; D000368:Aged; D005260:Female; D006801:Humans; D007398:Interpersonal Relations; D007407:Interviews as Topic; D008297:Male; D008875:Middle Aged; D009468:Neuromuscular Diseases / Q000523:psychology / Q000534:rehabilitation*; D011788:Quality of Life / Q000523:psychology; D000069350:Telerehabilitation / Q000379:methods*; D016896:Treatment Outcome; D049269:Videoconferencing; D055815:Young Adult