Case Report: Home initiation of nocturnal non-invasive ventilation in two adolescents with Duchenne muscular dystrophy and comorbid autism spectrum disorder and ADHD

Pien M M Weerkamp; Mark Voermans; Moniek Finders; Arno Brouwers; Philippe Collin; Sylvia Klinkenberg; Jos G M Hendriksen

doi:10.3389/fped.2025.1525365

Case Report: Home initiation of nocturnal non-invasive ventilation in two adolescents with Duchenne muscular dystrophy and comorbid autism spectrum disorder and ADHD

Front Pediatr. 2025 Mar 14:13:1525365. doi: 10.3389/fped.2025.1525365. eCollection 2025.

Authors

Pien M M Weerkamp¹, Mark Voermans², Moniek Finders², Arno Brouwers², Philippe Collin^{1

3}, Sylvia Klinkenberg^{1

4

5}, Jos G M Hendriksen^{1

5

6}

Affiliations

¹ Kempenhaeghe, Department Centre for Neurological Learning and Developmental Disabilities, Heeze, Netherlands.
² Department of Pulmonary Diseases/Home Mechanical Ventilation, Maastricht University Medical Centre, Maastricht, Netherlands.
³ Koraal Gastenhof, Sittard, Netherlands.
⁴ Department of Neurology, Maastricht University Medical Centre, Maastricht, Netherlands.
⁵ Faculty of Health, Medicine and Life Sciences, School for Mental Health and Neuroscience, Maastricht University, Maastricht, Netherlands.
⁶ Duchenne Center, Heeze, Netherlands.

Abstract

This case report describes initiation of Nocturnal Non-Invasive Ventilation in home settings for two adolescents with Duchenne Muscular Dystrophy and different neuropsychiatric and neurocognitive comorbidities: one has Autism Spectrum Disorder, and the other has Attention Deficit Hyperactivity Disorder, obsessive thinking and anxiety. This report emphasizes the need for a multidisciplinary team approach, incorporating medical, psychological and psychopharmacological interventions for successful Non-Invasive Ventilation implementation. Challenges include recognition of neuropsychiatric and neurocognitive comorbidities often seen in Duchenne Muscular Dystrophy. Lessons learned from these cases underscore the importance of: coordinated multidisciplinary efforts, early advanced care planning, accurate psychoeducation, cautious psychopharmacological interventions, and parental and patient involvement. To our knowledge, this is the first case report describing implementing Nocturnal Non-Invasive Ventilation in home settings in adolescents with Duchenne Muscular Dystrophy and neuropsychiatric and neurocognitive comorbidities. In conclusion, implementation at home can be successful and become a realistic target for each individual with Duchenne Muscular dystrophy.

Keywords: Duchenne muscular dystrophy; case report; neuropsychiatric and neurocognitive comorbidities; nocturnal non-Invasive ventilation; psychological intervention; psychopharmacological intervention.

Publication types

Case Reports

Grants and funding

The author(s) declare financial support was received for the research and/or publication of this article. This work is generated within the European Reference Network for Neuromuscular Diseases. We gratefully acknowledge support to P.W. and J.H. from the European Union Horizon 2020 Framework Programme research and innovation programme “Brain Involvement iN Dystrophinopathies” (grant agreement, 847826). We also genuinely thank Duchenne Parent Project Netherlands for their financial support to J.H. during this research project.