Investigation of the relationship between sleep disturbances and the sub-dimensions of the international classification of functioning, disability and health child and youth version (ICF-CY) in children with spinal muscular atrophy

The aim of our study was to identify sleep disturbances in children with Spinal Muscular Atrophy (SMA) and investigation of the relationship between sleep disorders and the sub-dimensions of the International Classification of Functioning, Disability and Health for Children and Youth (ICF-CY). Forty children aged 4–17 years diagnosed with SMA were included in the study. Sleep assessment was conducted using the Sleep Disturbance Scale for Children (SDCS), body function and structure-fatigue assessment using the Multidimensional Fatigue Scale (PedsQL™ MFS), activity assessment using the Expanded Hammersmith Functional Motor Scale (HFMSE) and Pediatric Outcome Data Collection Instrument (PODCI), and participation assessment using The Assessment of Life Habits (LIFE-H) questionnaire. Socioeconomic status and orthotic use were assessed for environmental factors, while SMN2 copy number, functional level and age were assessed for personal factors. The mean age of the children was 10.63±3.95 years. The rate of sleep disorder was determined to be 7.5% according to the SDSC. A correlation was found between the total SDSC score and the PedsQLTM MFS child and parent reports (p<0.05, r=-0.33, r=-0.40). No relationship was found between the parameters we determined for activity, participation, environmental, and personal factors and the total sleep disorder scores (p>0.05). In conclusion, our findings indicate that sleep disorders may develop in children with SMA. The relationships established between sleep disorders and body function and structure may serve as a basis for determining sleep-related treatments, and it is thought that intervention approaches targeting sleep and fatigue parameters may improve the quality of life of children with SMA. Keywords: Activity, fatigue, participation, sleep, spinal muscular atrophy.