Sleep and well-being in young men with neuromuscular disorders receiving non-invasive ventilation and their carers

Nocturnal ventilation has improved the physical status and life span of childhood neuromuscular disorders: the purpose of this study was to assess the implications for sleep and well-being in patients and carers. Ten young men (age range 12–25 years) with neuromuscular disorders on assisted ventilation and/or their main carers completed questionnaires on sleep quality, physical and psychological well-being, family burden and function. Both patients and parents expressed satisfaction with ventilation treatment. Compared to standardised values patients reported reduced sleep quality, but their mental health was not substantially affected. Poor sleep quality in carers – but not in patients – was significantly associated with risk for emotional (anxiety and depressive) disorders, reduced physical/emotional health, family burden and difficulty. We conclude that patients were generally well adapted psychologically, but sleep quality was poor and in carers this was linked to reduced well-being and family burden.