Title:	TELE-HEALTH AND NEUROMUSCULAR DISEASES
Author(s):	Esther Lázaro, Imanol Amayra, Juan Francisco López-Paz, Amaia Jometón, Oscar Martínez, Imanol Pérez
ISBN:	978-972-8939-82-3
Editors:	Piet Kommers and Pedro Isaías
Year:	2013
Edition:	Single
Keywords:	Teleassistance, online support, neuromuscular disease, isolation, quality of life.
Type:	Short Paper
First Page:	360
Last Page:	364
Language:	English
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Paper Abstract:	Neuromuscular diseases are a group of pathologies characterized by the progressive loss of muscular strength, atrophy or hypertrophy, fatigue, muscle pain and degeneration of the muscles and the nerves controlling them (The French Muscular Dystrophy Association, 2004). Perceived isolation and health related quality of live are affected in the majority of cases due to the illness chronicity. Internet and the use of chat and videoconferencing programs are alternatives options to mitigate the mentioned variables. Thus, the aim of the study is to assess the effectiveness of teleassistance on reducing isolation and improving health related quality of life in adults with neuromuscular diseases. The sample was composed of 60 participants randomly selected and affected by different neuromuscular diseases (e.g. Myasthenia Gravis, Becker Muscular Dystrophy, Facioescapulohumeral Muscular Dystrophy, etc.). Twenty-four patients were assigned to the experimental group, which participated in the chat and videoconferencing sessions, and twenty-one to the control group, which did not participate. All the patients were recruited from neuromuscular disorders associations and Hospitals of The Basque Country. Effectiveness were assessed by a pre-post design in which questionnaires and interviews were administrated (e.g. Disability Assessment Schedule – WHO-DAS II, Sickness Impact Profile, The MOS Social Support Survey, etc.). The online support entailed different activities developed during three months in once a week sessions: a) Group videoconference sessions with a Psychologist, b) Individual videoconference sessions with a Neurologist, and c) Forum discussion groups about biopsychosocial issues. The psychologist counseling consisted on a psychosocial program about general topics such as illness information, emotional reactions to the disease, the most frequently automatic thoughts, etc. A web site was developed to carry out the intervention: http://neuromusculares.deusto.es/. Preliminary results revealed that health-related quality of life improved after the teleassistance and feelings of isolation were reduced in patients with mobility problems due to teleassistance. High levels of satisfaction are reported by the participants. Teleassistance is an effective alternative way of advising people with neuromuscular disorders.
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