Characteristics of Pain in Children and Youth With Cerebral Palsy

Abstract

WHAT'S KNOWN ON THIS SUBJECT: Pain in children with cerebral palsy is underrecognized and undertreated and negatively affects quality of life. Communication challenges and multiple pain etiologies complicate management. There is a wide range of pain prevalence reported in the literature (14% to 73%). WHAT THIS STUDY ADDS:The impact of pain on activities in children with cerebral palsy across a wide age range and motor abilities is investigated. Physician-identified causes of pain are systematically assessed and reported. Concordance of physician and caregiver identification of pain is evaluated. abstract OBJECTIVES: 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 physicianidentified causes of pain in children and youth ages 3 to 19 years across all levels of severity of CP. METHODS: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 onetime 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. RESULTS: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. CONCLUSIONS: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. Pediatrics 2013;132: e407-e413 AUTHORS:

Professionals’ Perceptions about the Need for Pain Management Interventions for Children with Cerebral Palsy in South African School Settings

“…Professionals should use different treatment strategies for every child, i.e., an individual combination of pharmacological substances and complementary methods that include psychological, social, and physical strategies such as physiotherapy (Nilsson, Enskär, Hallqvist, & Kokinsky, 2013;Penner, Xie, Binepal, Switzer, & Fehlings, 2013). As orally administered medication does not always reduce pain in children with CP, alternatives could be implemented with other types of medication, such as continuous intrathecal baclofen (CITB) therapy (Vles et al, 2013) or botulinum toxin type-A (BoNT-A; Williams et al, 2013).…”

Chronic Pain Assessment Tools for Cerebral Palsy: A Systematic Review

“…8 Children with more severe motor impairments may experience pain stemming from musculoskeletal changes (eg, hip subluxation/ dislocation, fragility fractures secondary to a reduction in bone mass), neurologic issues (eg, hypertonia, spasticity, dystonia), gastrointestinal issues (eg, gastro esophageal reflux), and/or assistive equipment (eg, uncomfortable seating). 6,9 This is not to say that children at lower levels of GMFCS do not experience chronic pain. Previous estimates suggest that pain is experienced by upwards of 60% of children with CP who can self-report, and as high as 73% of children when report is provided by a caregiver proxy.…”

“…8,10 Within a Canadian context, 1 in 4 children with CP have moderate to severe pain and in some cases, report multiple sources of pain. 9 The vast heterogeneity of the CP condition, as well as multiple potential sources of pain and varied communicative abilities hampers accurate assessment; this often leaves pain unrecognized and untreated. 9,11,12 Unrecognized pain can have negative implications on health and quality of life, with the possibility that childhood pain will persist and progress into adulthood.…”

“…9 The vast heterogeneity of the CP condition, as well as multiple potential sources of pain and varied communicative abilities hampers accurate assessment; this often leaves pain unrecognized and untreated. 9,11,12 Unrecognized pain can have negative implications on health and quality of life, with the possibility that childhood pain will persist and progress into adulthood. 1,9,11,[13][14][15][16][17][18][19][20] Chronic pain can significantly interfere with participation in daily living activities, both as a result of limited mobility resulting from the source of pain and fear-driven avoidance of specific activities.…”

“…9,11,12 Unrecognized pain can have negative implications on health and quality of life, with the possibility that childhood pain will persist and progress into adulthood. 1,9,11,[13][14][15][16][17][18][19][20] Chronic pain can significantly interfere with participation in daily living activities, both as a result of limited mobility resulting from the source of pain and fear-driven avoidance of specific activities. 8,15,16,[21][22][23][24] Childhood chronic pain has been associated with disturbances in sleep, increased fatigue, depression, and decreased physical functioning.…”