Access to education of neuromuscular disease patients in Thailand.

Abstract

Background: Neuromuscular diseases are a group of disorders characterized by abnormalities in muscle function, neuromuscular junction signaling, or peripheral nerve function. Neuromuscular diseases cause progressive muscle weakness leading to mobility loss, while brain function and cognition remain intact.  Literature from other countries indicates that patients often continue education and live normal lives, but in Thailand, mobility issues frequently lead to dropping out of school.

Objectives: This study aimed to known the accession of education of neuromuscular disease patients in Thailand, to identify factors contributing to the inability of these patients in education access, to explore patients' perspectives, and to assess their needs for additional support in education and classroom activities.

Methods: The cross-sectional study was conducted among patients aged 3 to 25 years old diagnosed with neuromuscular disease, at the Siriraj Neuromuscular Disease Center, Thailand between 1 August 2023 and 31 July 2024. A questionnaire was developed to collect factors associated with education.

Results: Among 105 patients with neuromuscular diseases, 73 were receiving education, 5 had never attended school, and 27 had dropped out. Most were diagnosed with DMD/BMD (36.3%), followed by SMA (26.7%). After adjusting for confounding, unsuitable school environments increased the risk of not attending school by 26.6 times. Patients who were wheelchair-bound or bedridden were 23.5 times more likely to not attend school, while those who had undergone surgery were 13.8 times more likely. Caregiver difficulties were associated with 22.3 times increased risk of school dropping out, and low household income (≤ 30,000 THB/month) was linked to a 10.9 times increased risk.

Conclusion: Among 105 patients with neuromuscular diseases, one-third were not attending school due to various barriers. Key risk factors included mobility limitations, low household income, scoliosis surgery, caregiver difficulties, and unsuitable school environments. Addressing these challenges is critical to improving educational access for these patients.