Background & Aims

Cerebral palsy (CP) is the most common cause of physical disability in children, impacting 2 to 3 in every 1000 live births. It is well-established that pain is present in up to 75% of youth with CP, making it the most prevalent secondary condition. Youth with CP also report poor mental health, quality of life, and daily functioning. Despite this, little is known about the multiple dimensions of pain, the role of mental health in the experience of pain, and the impact of pain on quality of life in youth with CP. Further, no research has considered how pain impacts daily functioning of youth with CP, overtime. The present study extended and replicated previous research on pain in youth with CP by 1) characterizing the experience of pain, 2) determining the cross-sectional associations between pain, mental health, and quality of life, and 3) investigating how pain interferes with daily functioning using an Ecological Momentary Assessment approach (EMA).

Methods

Forty-five youth with CP, between 8 and 17 years of age (58% boys; Mage = 11.6 years [SD=2.67]), along with their caregivers, completed cross-sectional measures of pain, mental health, and quality of life. Following this, youth completed seven days of daily surveys through REDCap that measured daily pain and functioning (i.e., “How much did pain interfere with your day?”). To characterize the pain experience (i.e., chronicity, intensity, location, interference) of these youth, descriptive statistics were conducted. While controlling for Gross Motor Function Classification Level (GMFCS), gender, and age, hierarchical multiple regression analyses were conducted to determine if pain interference predicted depression, anxiety, and quality of life. Lastly, the impact of pain on same and next day pain interference was evaluated through multi-level modelling, which accounted for variance in time and pain.

Results

Forty percent of youth reported that they experience chronic pain (i.e., pain lasting longer than 3 months), with a mean pain intensity level of 4.03/10 (SD = 1.96), and an average pain interference T-score of 49.23 (SD = 14.70). Majority of participants (59%) reported that their pain was located in their legs. Hierarchical multiple regression analyses demonstrated that pain interference significantly predicted poorer quality of life, over and above covariates. Pain interference did not predict anxiety and depression above covariates. Variance in pain intensity over the 7-day period was significantly associated with same and next day pain interference, such that higher pain intensity was related to higher pain interference.

Conclusions

This is the first study to characterize the pain experience in youth with CP and micro-longitudinally evaluate the daily impact of pain on functioning. Reported chronic pain level was double that of what is reported in neurotypical youth (~20%). Pain intensity and interference may impact the mental health and quality of life of these youth. Lastly, differences in daily levels of pain may significantly impact how pain interferes with the daily functioning of youth with CP.

References

Oskoui, M., Coutinho, F., Dykeman, J., Jette, N., & Pringsheim, T. (2013). An update on the prevalence of cerebral palsy: a systematic review and meta?analysis. Developmental Medicine & Child Neurology, 55(6), 509-519.

Novak, I., Hines, M., Goldsmith, S., & Barclay, R. (2012). Clinical prognostic messages from a systematic review on cerebral palsy. Pediatrics, 130(5), e1285-e1312.

Downs, J., Blackmore, A. M., Epstein, A., Skoss, R., Langdon, K., Jacoby, P., Whitehouse, A. J., Leonard, H., Rowe, P. W., & Glasson, E. J. (2018). The prevalence of mental health disorders and symptoms in children and adolescents with cerebral palsy: A systematic review and meta?analysis. Developmental medicine & child neurology, 60(1), 30-38.

Chen, K.-L., Tseng, M.-H., Shieh, J.-Y., Lu, L., & Huang, C.-Y. (2014). Determinants of quality of life in children with cerebral palsy: A comprehensive biopsychosocial approach. Research in developmental disabilities, 35(2), 520-528.

Davis, E., Reddihough, D., Murphy, N., Epstein, A., Reid, S., Whitehouse, A., Williams, K., Leonard, H., & Downs, J. (2017). Exploring quality of life of children with cerebral palsy and intellectual disability: What are the important domains of life? Child: care, health and development, 43(6), 854-860.

Presenting Author

Cara Nania

Poster Authors

Cara Nania

MSc

University of Calgary

Lead Author

Chris Clark

MSc

Lead Author

Melanie N. Noel

PhD

Alberta Children’s Hospital Research Institute, Calgary, Alberta, Canada

Lead Author

Laura Brunton

PhD

Lead Author

Elizabeth G. Condliffe Condliffe

PhD

Lead Author

Daniel C. Kopala-Sibley

PhD

Lead Author

Carly McMorris

PhD

Lead Author

Topics

  • Pain in Special Populations: Intellectual, Developmental, and Functional Disability