Assessment of Pain and Sleep Symptoms in Children at High Risk for Cerebral Palsy in a Pediatric Neurodevelopmental Clinic: Implications for Future Quality Improvement Interventions.

Children with cerebral palsy (CP) often experience distressing symptoms. It is estimated that 3 in 4 have chronic pain and 1 in 5 have a sleep disorder, with the highest frequency and severity occurring in children with the greatest impairment. Sleep impairment and pain can adversely impact activities, participation and quality of life; however, prevalence of these symptoms in children at risk for CP < 2 years of age remain unknown. The objective of this project was to develop a baseline understanding of the presence of sleep and pain symptoms among children <2 years at high risk for CP to establish a baseline estimate for future quality improvement initiatives. A retrospective chart review was performed on a convenience sample of 50 children <2 years of age that were determined to be high risk for CP. This was determined through a standardized Hammersmith Infant Neurological Evaluation (HINE) global score of less than 56 performed as part of routine care. Descriptive statistics were used to explore the sample. A nonparametric test was used to evaluate the differences between groups. Pain and sleep problems were frequently reported in our sample (38% sleep problems and 32% pain). There were also significant differences between reported symptoms and the HINE. Reported symptoms were associated with lower HINE scores. Sleep and pain are frequent symptoms in children at risk for cerebral palsy. Early identification of these symptoms can lead to clinic-level intervention which may include pharmacological and non-pharmacological management strategies that improve outcomes for children at high risk for CP.