The Characterization of Pain in Youth with Cerebral Palsy: A Micro-Longitudinal Analysis

Abstract

Background. 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 (i.e., intensity, interference, chronicity), 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 to date has considered how pain impacts daily functioning of youth with CP, overtime. Understanding pain in youth with CP is crucial for improving their quality of life, preventing lifelong secondary complications (i.e., functional impairments and mental health issues), and developing tailored pain management strategies. Objectives. The present study extended and replicated previous research on pain in children and youth with CP by 1) characterizing the human experience of pain (i.e., intensity, frequency, location, duration, interference, and chronicity), 2) determining the cross-sectional associations between pain outcomes (i.e., intensity and interference) and mental health (i.e., depression and anxiety), as well as pain outcomes (i.e., intensity and interference) and quality of life, and 3) investigating how pain interferes with daily functioning using an Ecological Momentary Assessment (EMA) approach. 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., intensity, location, interference) of these youth, descriptive statistics were conducted. Hierarchical multiple regression analyses were also 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 (level 1) and pain (level 2). 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. Controlling for Gross Motor Function Classification Level (GMFCS), gender, and age, hierarchical multiple regression analyses demonstrated that pain interference significantly predicted poorer quality of life. Pain interference did not predict anxiety and depression over and above these 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. Discussion. 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. Findings will directly inform treatment approaches to improve outcomes for these vulnerable individuals, and offset a trajectory of increased mental health issues, reduced quality of life, and poor functioning and disability into adulthood.