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.
The assessment of facial expression is an important aspect of a clinical neurological examination, both as an indicator of a mood disorder and as a sign of neurological damage. To date, although studies have been conducted on certain psychosocial aspects of myasthenia, such as quality of life and anxiety, and on neuropsychological aspects such as memory, no studies have directly assessed facial emotion recognition accuracy. The aim of this study was to assess the facial emotion recognition accuracy (fear, surprise, sadness, happiness, anger, and disgust), empathy, and reaction time of patients with myasthenia. Thirty-five patients with myasthenia and 36 healthy controls were tested for their ability to differentiate emotional facial expressions. Participants were matched with respect to age, gender, and education level. Their ability to differentiate emotional facial expressions was evaluated using the computer-based program Feel Test. The data showed that myasthenic patients scored significantly lower (p < 0.05) than healthy controls in the total Feel score, fear, surprise, and higher reaction time. The findings suggest that the ability to recognize facial affect may be reduced in individuals with myasthenia.
Objective: This study presents the validation of a computerized assessment tool that studies the ability to recognize emotional facial expressions in children between 8 and 11 years of age: the Facially Expressed Emotion Labeling Test (FEEL Test). Method: The two tests composing the protocol were applied using a laptop in the following order: the FEEL Test followed by the Deusto-e-Motion 1.0 Test.The sample consisted of a total of 1,189 schoolchildren aged between 8 and 11 years, 594 boys and 594 girls. A clinical sample of 47 children with ADHD also took part in this study. Results: The Cronbach’s α coefficient for the total scale was .82, showing high levels of reliability. The difficulty index of the items ranged between .4 and .7. The statistical analyses showed a high rate of discrimination between those who obtained low scores compared with those who obtained high scores. The test results reflected differences according to age and gender of participants in many of the variables associated with both response accuracy and response speed. Regarding its predictive validity, the test is able to find statistically significant differences in the total test score among a group of children diagnosed with ADHD and a matched control group. Conclusion: This article presents the validation of an instrument that assesses the ability to recognize facial expressions in children between 8 and 11 years old and can discriminate and detect differences in gender, age, and possible deficits in social skills within the ADHD.
Background: 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 life are affected in the majority of cases due to the illness chronicity. Internet, and in this way, the use of chat and videoconferencing programs, is an alternative option to mitigate the mentioned variables. Aim: 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. Methods: The sample is composed of 60 participants randomly selected and affected by different neuromuscular diseases (e.g. Myasthenia Gravis, Becker Muscular Dystrophy, Facioescapulohumeral Muscular Dystrophy, etc.). Thirty patients were assigned to the experimental group, which participated in the chat and videoconferencing sessions, and the other thirty to the control group, which did not participate. The inclusion criteria for both groups were: medical confirmed diagnosis (CIE-10) of one of the diseases mentioned above, age ≥18 years, agreeing to participate in the study by signing an informed consent, and finally, ability to manipulate a computer (just for the experimental group). The exclusion criteria for both groups were to have a psychiatric disorder (DSM-IV-TR), head trauma or severe visual limitations. 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 entails 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 consists 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/. An exhaustive preliminary analysis of this pre-post assessment is necessary in order to know if the psychosocial programme is effective and if it could be a helpful tool for this type of population. Results: Preliminary results will be presented in order to confirm if teleassistance is an effective alternative way of advising people with neuromuscular disorders.
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