Limb-Girdle Muscular DystrophySocial CompetenceSelf EsteemHealth Related Quality of LifeSocial Skills
Investigational drug(s) / intervention(s)
Neuro-psychosocial teleassistance program
Neuro-psychosocial teleassistance program: The intervention is carried out in groups of 5 participants and is organised in 12 sessions: 1 session per week of 1h duration. The objective of the intervention is to improve the participants' quality of life as well as to reduce their symptomatology by targeting areas such as social cognition, emotional and personal management, cognitive restructuring, relaxation strategies, social skills, and coping strategies.
Study summary
This clinical trial aims to evaluate the efficacy of a telecare-mediated psychosocial and cognitive intervention for children and adolescents aged 7 to 17 with limb-girdle muscular dystrophy. This group-based intervention (comprising 5 participants) consists of 12 weekly one-hour sessions. The objective of the intervention is to improve the participants' quality of life as well as to reduce their symptomatology by targeting areas such as social cognition, emotional and personal management, cognitive restructuring, relaxation strategies, social skills, and coping strategies.
Eligibility
Sex
ALL
Min age
7 Years
Max age
17 Years
Healthy volunteers
No
Inclusion Criteria:
* To be diagnosed with limb-girdle muscular dystrophy
* Being between 7 and 17 years old
* Having signed an informed consent form through their legal guardians prior to participation in the study
* Having Spanish as one of their main languages
* Having access to a computer (with a camera, microphone and speakers integrated) and Internet connection to take part in the videoconferences
Exclusion Criteria:
* Presence of any other diagnosis or sensory deficit that would prevent the application of the tests or hinder the correct performance of the intervention's activities
* Being illiterate
Primary outcome measure(s)
Social cognition - Emotion Recognition — 3 months after the intervention Affect Recognition subtest of the Social Perception Domain of the NEPSY-II in the Spanish edition (Korkman et al., 2014) measures the capacity to identify emotions (happy, sad, neutral, afraid, irrationally angry, and disgust) in various images of children.
Social cognition - Theory of mind - NEPSY-II — 3 months after the intervention Theory of Mind subtest of the Social Perception Domain of the NEPSY-II in the Spanish edition (Korkman et al., 2014) assesses figurative language, imitation skills, and the capacity to comprehend the thoughts, ideas, and beliefs of others and it also evaluates a person's capacity to comprehend how emotions relate to the social context.
Social cognition - Theory of mind - Happé's Strange Stories — 3 months after the intervention The Happé's Strange Stories Test is a well-known test of ToM (Happé, 1994; Spanish version: Pousa, 2002). In this study, we used the White et al. (2009) version that has eight story-types. This test evaluates participants' capacity to comprehend nonliteral meanings through the reading of brief vignettes.
This page summarises publicly available registry data for informational purposes — not medical advice. Eligibility is determined by each study team; patients should discuss participation with their clinician.
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