Nart, Luca; Desikan, Mahalekshmi; Pietrusz, Aleksandra; Savvatis, Konstantinos; Quinlivan, Ros; (2024) Neurodiversity, treatment compliance and survival in adults with Duchenne muscular dystrophy: A single-centre retrospective cohort review. Neuromuscular Disorders , 35 pp. 13-18. 10.1016/j.nmd.2023.12.003.

Text Neurodevelopmental Manuscript (UCL REF Copy).pdf - Accepted Version Access restricted to UCL open access staff until 9 January 2025. Download (383kB)

Abstract

Duchenne muscular dystrophy (DMD) is the most common muscular dystrophy worldwide. With increasing survival, there is now a greater awareness of associated neurodevelopmental co-morbidities. Despite this, there is currently a limited understanding of how these co-morbidities might potentially impact on health outcomes. This study reviewed the characteristics of 37 adults with DMD who died between 2011 and 2022. The median age of death was 22.25 years, and those with neurodevelopmental co-morbidities had statistically poorer survival than those without a neurodevelopmental disorder. Notably, the proportion of patients within this cohort with a diagnosis of a neurodevelopmental disorder was higher than previously reported studies in living cohorts. This study suggests that patients with a co-morbid neurodevelopmental disorder may have worse health outcomes than those who do not.

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