“Background. Myotonic Dystrophy type 1 (DM1) is characterized by multisystemic involvement, including progressive muscular weakness, cognitive and behavioural changes, and sleep disorders. The most represented are sleep-disordered breathing, excessive daytime sleepiness, and periodic limb movement disorders (70-80%). However, more data is needed on the quality of sleep perceived, and the multisystemic disease burden. This study aimed to assess the perceived quality of sleep in our cohort.
Patients and Methods. We tested the sleep quality of 12 DM1 patients (Male 7, Female 5, mean age 52, mean disease duration 17 years), assessed with the Insomnia Severity Index (ISI) and the Pittsburgh Sleep Quality Index (PSQI), evaluated at the Maggiore della Carità University Hospital, Novara, Italy.
Results. The ISI and PSQI scales reported a low percentage of clinically relevant sleep disorders in our cohort (16.6%). Despite this, the questionnaires showed a greater prevalence of nocturnal awakenings (91.6%) than disturbances in falling asleep (41.5%), as well as a high frequency of snoring (91.6%) and back or lower limbs pain (91.6%). Most described some degree of asthenia and difficulty completing daytime activities (83.3%), with only a small percentage experiencing clear daytime sleepiness (41.5%). Few cases expressed sleep-related discomfort (16.6%) or a worsening of life quality (24.9%).
Discussion. Our data have shown a relatively lower prevalence of sleep disorders in our patients. This could be attributable both to the poor specificity of the questionnaires used and to a known lack of disease awareness, which could increase the gap between the perceived and the measured.”