Dreams and Discomfort: The Relationship Between Pain, Sleep, and Parental Expectations for Children with Cerebral Palsy

Research Objectives: To investigate the incidence of pain and sleep difficulties among children with cerebral palsy (CP) and examine how demographics and parental expectations impact the presence of these challenges.

Design: Prospective analysis of data collected at the baseline visit of a randomized control trial.

Setting: Assessments were completed at a pediatric rehabilitation research laboratory by trained physical therapy (PT) assessors.

Participants: Ninety-seven children aged 2-8 years diagnosed with CP completed baseline assessments and were included in the analysis. Representative of the disability and local population, participants were primarily male (54.1%), white (64.3%), and had a gross motor function classification system (GMFCS) levels ranging from I-V.

Interventions: N/A

Main Outcome Measures: Parents of study participants completed a detailed medical/therapy history (including the presence of pain and sleep habits), Hollingshead Four-Factor Index of Socioeconomic Status, and Pediatric Outcomes Data Collection Instrument questionnaires. Participants’ gross motor abilities were assessed using the Gross Motor Functional Classification System. Statistical relationships were examined using chi-square tests.

Results: At the baseline visit, 31.6% of participants reported sleeping difficulties while 20.4% reported pain. The majority of participants reported pain does not interfere with normal activities (56.1%) and experienced no pain in the week prior (52.0%). Those who reported experiencing pain in the past week were more likely to also report sleeping difficulties (χ2=8.7116, d.f.=1, p=0.003). However, pain interference in daily activities was not associated with increased sleeping difficulties (χ2=4.4081, d.f.=2, p=0.11). There is not enough evidence to conclude there is an association between participant GMFCS level, race, or parental income and presence of pain or sleep difficulties. Regarding expectations, 48.5% of parents anticipated PT would improve sleep comfort. Interestingly, opinions varied on whether PT would provide pain relief, with 35.1% not expecting relief, 30.9% expecting pain relief, and 33.0% unsure about the impact of PT on pain.

Conclusions: Sleeping difficulties and pain are both prevalent in young children with CP per parent report with nearly half of participants experiencing mild or greater pain intensity. GMFCS level, race, or parental income had no impact on experience of pain or sleeping difficulties. Importantly, participants with pain in the week prior were more likely to experience sleeping difficulties. Monitoring the pain and sleep difficulties of children with CP will ensure appropriate management and prevent the negative sequalae of exposure to pain and sleep deprivation in childhood. Further exploration is needed to assess the impact of PT treatments on pain relief and sleep comfort.

Author(s) Disclosures: No conflicts of interests to declare.