Substance use may be associated with non-adherence to non-invasive ventilation in adults with myotonic dystrophy type 1

Adults with myotonic dystrophy type 1 who require non-invasive ventilation (NIV) often have difficulty with adherence. Few risk factors for non-adherence have been identified, and these are mostly unmodifiable. As part of a quality assurance initiative, we sought to identify psychosocial barriers to NIV adherence to improve supports around isolation and mental health. We found that substance use was associated with non-adherence to NIV in our cohort. Cognitive impairment, the receipt of provincial income support, presence of a psychiatric condition, living alone, and marital status were not associated with NIV adherence. Interventions that limit the impact of substance use may improve NIV in this population.