Neuro-psychosocial Teleassistance for Neuromuscular Diseases

University of Deusto

Status: Completed

Conditions: Self Esteem; Social Competence; Neuromuscular Diseases; Quality of Life; Social Skills

Treatments: Behavioral: Neuro-psychosocial teleassistance program

Study type: Interventional

Funder types: Other

Identifiers

NCT06031701

Neuro-e-Motion NMD

Details and patient eligibility

About

This is a clinical trial to assess the effect of a neuropsychosocial intervention by means of telecare aimed at children and adolescents aged 7-16 years with neuromuscular diseases. The intervention is carried out in groups of 5 participants and is organised in 12 sessions: 1 session per week of 1h duration. The intervention is aimed at strengthening aspects of social cognition, self-esteem, social skills and aims at a reduction of symptomatology and a general improvement of psychological well-being.

Full description

Development of a neuro-psychosocial tele-assistance programme for groups of children and adolescents affected by various neuromuscular diseases, including Duchenne/Becker muscular dystrophy, limb-girdle dystrophy, etc. In this project the variables of interest and intervention include social cognition, quality of life, psychological symptomatology and coping strategies. The aim of this study is to test whether this programme improves the indicators in the mentioned variables.

Enrollment: 35 patients

Sex: All

Ages: 7 to 16 years old

Volunteers: No Healthy Volunteers

Inclusion criteria

• To be diagnosed with a neuromuscular disease by a specialist
• Being between 7 and 16 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

Trial design

Primary purpose: Treatment

Allocation: Non-Randomized

Interventional model: Parallel Assignment

Masking: None (Open label)

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35 participants in 2 patient groups

Intervention

Experimental group

Description:

Neuro-psychosocial intervention with 12 grupal sessions is offered

Treatment:

Behavioral: Neuro-psychosocial teleassistance program

Control

Experimental group

Description:

Waiting list control group

Treatment:

Behavioral: Neuro-psychosocial teleassistance program