Characteristics of pain in children and youth with cerebral palsy.

Abstract

Pain in children with cerebral palsy (CP) is underrecognized, undertreated, and negatively affects quality of life. Communication challenges and multiple pain etiologies complicate diagnosis and treatment. The primary objectives of this study were to determine the impact of pain on activities and to identify the common physician-identified causes of pain in children and youth ages 3 to 19 years across all levels of severity of CP. The study design was cross-sectional, whereby children/youth aged 3 to 19 years and their families were consecutively recruited. The primary caregivers were asked to complete a one-time questionnaire, including the Health Utilities Index 3 pain subset, about the presence and characteristics of pain. The treating physician was asked to identify the presence of pain and provide a clinical diagnosis for the pain, if applicable. The response rate was 92%. Of 252 participants, 54.8% reported some pain on the Health Utilities Index 3, with 24.4% of the caregivers reporting that their child experienced pain that affected some level of activities in the preceding 2 weeks. Physicians reported pain in 38.7% and identified hip dislocation/subluxation, dystonia, and constipation as the most frequent causes of pain. One-quarter of our sample experienced pain that limited activities and participation. Clinicians should be aware that hip subluxation/dislocation and dystonia were the most common causes of pain in children/youth with CP in this study. Potential causes of pain should be identified and addressed early to mitigate the negative impact of pain on quality of life.