https://www.pmr.theclinics.com/article/S1047-9651(09)00023-0/pdf

Cerebral Palsy: Classification and Epidemiology

OBJECTIVE: The goal was to determine whether the type and severity of the child's impairments and the family's psychosocial, social, and economic characteristics influence parent-reported child quality of life across the spectrum of severity of cerebral palsy. METHODS: Our population-based, cross-sectional survey conducted in 2004 to 2005 involved 818 children with cerebral palsy, 8 to 12 years of age, from 7 countries (9 regions) in Europe. Child quality of life was assessed through parent reports by using the Kidscreen questionnaire, and data were analyzed separately for each of its 10 domains. RESULTS: The parental response rates were >93% for all domains except one. Gross motor function and IQ level were found to be associated independently with quality of life in most domains. However, greater severity of impairment was not always associated with poorer quality of life; in the moods and emotions, self-perception, social acceptance, and school environment domains, less severely impaired children were more likely to have poor quality of life. Pain was associated with poor quality of life in the physical and psychological well-being and self-perception domains. Parents with higher levels of stress were more likely to report poor quality of life in all domains, which suggests that factors other than the severity of the child's impairment may influence the way in which parents report quality of life. CONCLUSIONS: The parent-reported quality of life for children with cerebral palsy is associated strongly with impairment. However, depending on the areas of life, the most severely impaired children (in terms of motor functioning or intellectual ability) do not always have the poorest quality of life.

https://research.ncl.ac.uk/sparcle/Publications_files/Published%20article%20Parent%20QoL%20Arnaud.pdf

Parent-Reported Quality of Life of Children With Cerebral Palsy in Europe

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 physician-identified 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 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.

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.

* Abbreviations:
 CP — : cerebral palsy
 GMFCS — : Gross Motor Function Classification System
 HUI3 — : Health Utilities Index 3
 MSK — : musculoskeletal

Characteristics of Pain in Children and Youth With Cerebral Palsy

Objective: To determine the effectiveness of aquatic interventions in children with neuromotor impairments.Design: A search of electronic databases that included MEDLINE, PubMed, ERIC, PsychLit, PEDro, Sport Discus, CINAHL and Cochrane between 1966 and January 2005 was conducted using the following keywords: ‘hydrotherapy’, ‘aquatic therapy’, ‘water exercise’, ‘aquatics’, ‘adapted aquatics’, ‘aquatic exercise’ and ‘swimming’. An additional resource, the Aquatic Therapy Research Bibliography until 1999, was explored manually. Titles and abstracts were assessed manually according to the following inclusion criteria: (1) population (children with neuromotor or neuromuscular impairments), (2) intervention (aquatic programme). Articles were reviewed according to merit of design, population participants and outcome measures with respect to International Classification of Function and Disability terminology (changes in body function, activity level and participation).Results: Eleven of the 173 articles that were...

Effects of aquatic interventions in children with neuromotor impairments: a systematic review of the literature

Aim Botulinum toxin type A (BoNT-A) injections were used in the treatment of lower-limb spasticity in children with cerebral palsy (CP). Anecdotal evidence suggests a reduction in pain after this treatment in children who had pain localized to a displaced hip joint. We report on our current clinical practice.



Method  Twenty-six children with non-ambulant quadriplegic CP (Gross Motor Function Classification System level V) were assessed as having significant spasticity and pain at the hip level. Twelve were males and 14 females, with an age range of 2 to 19 years (mean age 11y 6mo, SD 4y 9mo). Ten had functional difficulties secondary to predominant spasticity and 16 had a mix of a high-background peripheral tone with superimposed dystonia. Of the 26 children assessed, 10 had at least one hip which was dislocated and three had at least one hip which was subluxed. As part of their spasticity management programme they received targeted BoNT-A injections to the adductor magnus, medial hamstrings and iliopsoas muscle groups. The Paediatric Pain Profile was used as the primary outcome measure.



Results  All had highly significant improvement in their recorded pain profile scores measured at 3 months after treatment (p<0.001). There was equal efficacy in response to treatment in the children with subluxed or dislocated hips. In addition, families commented on improved quality of life for the children across several areas, including sleep, postural management, and activities of daily living.



Interpretation  This report demonstrates that targeted BoNT-A injections reduced pain in children with significant spasticity and pain at the hip level. They may also improve quality of life of non-ambulant children with CP and a hip problem.

Botulinum toxin type A injections can be an effective treatment for pain in children with hip spasms and cerebral palsy

Children with cerebral palsy (CP) face many challenges including impaired motor control and coordination, functional impairment, sensory disturbances, and, sometimes, communication difficulties and cognitive deficits. Pain also may be a problem for children with CP due in part to the inherent deficits associated with the disease, as well as the invasive medical and surgical procedures and rehabilitative activities children with CP undergo on a regular basis. A review of current literature indicates pain is a common experience for children with CP and has been understudied in this population. Further emphasis and research on appropriate assessment and management strategies sensitive to the unique characteristics and limitations of children with CP are warranted.

Joyce M. Engel

Papers

Pain in children with cerebral palsy: a review.