Australian Cerebral Palsy Child Study: protocol of a prospective population based study of motor and brain development of preschool aged children with cerebral palsy

Abstract

BackgroundCerebral palsy (CP) results from a static brain lesion during pregnancy or early life and remains the most common cause of physical disability in children (1 in 500). While the brain lesion is static, the physical manifestations and medical issues may progress resulting in altered motor patterns. To date, there are no prospective longitudinal studies of CP that follow a birth cohort to track early gross and fine motor development and use Magnetic Resonance Imaging (MRI) to determine the anatomical pattern and likely timing of the brain lesion. Existing studies do not consider treatment costs and outcomes. This study aims to determine the pathway(s) to motor outcome from diagnosis at 18 months corrected age (c.a.) to outcome at 5 years in relation to the nature of the brain lesion (using structural MRI).MethodsThis prospective cohort study aims to recruit a total of 240 children diagnosed with CP born in Victoria (birth years 2004 and 2005) and Queensland (birth years 2006–2009). Children can enter the study at any time between 18 months to 5 years of age and will be assessed at 18, 24, 30, 36, 48 and 60 months c.a. Outcomes include gross motor function (GMFM-66 & GMFM-88), Gross Motor Function Classification System (GMFCS); musculoskeletal development (hip displacement, spasticity, muscle contracture), upper limb function (Manual Ability Classification System), communication difficulties using Communication and Symbolic Behaviour Scales-Developmental Profile (CSBS-DP), participation using the Paediatric Evaluation of Disability Inventory (PEDI), parent reported quality of life and classification of medical and allied health resource use and determination of the aetiology of CP using clinical evaluation combined with MRI. The relationship between the pathways to motor outcome and the nature of the brain lesion will be analysed using multiple methods including non-linear modelling, multilevel mixed-effects models and generalised estimating equations.DiscussionThis protocol describes a large population-based study of early motor development and brain structure in a representative sample of preschool aged children with CP, using direct clinical assessment. The results of this study will be published in peer reviewed journals and presented at relevant international conferences.Trial registrationAustralia and New Zealand Clinical Trials Register (ACTRN1261200169820)

Everyday psychological functioning in children with unilateral cerebral palsy: does executive functioning play a role?

“…Children were ineligible if they had an uncontrolled seizure disorder. They were identified from a research database of children born in Queensland attending state-wide CP health services as described in the Australian CP Child Study protocol 23 and in the protocol for this study. 21 Identification of children for inclusion in the research database followed the guidelines of the Surveillance of Cerebral Palsy in Europe 24 and used a working definition of CP as a motor impairment stemming from an early, non-progressive brain lesion.…”

School readiness of children with cerebral palsy

“…In Australia, there are no intervention programmes available to promote social, communication, and cognitive skill development. In the Australian CP Child Study, 16 we monitored by formal questionnaire the use of all medical and allied health services and therapeutic recreational programmes that these children accessed every 6 months; we can confirm the lack of specific, tailored interventions to improve communication, social functioning, and cognition for children with CP. In Australia, we acknowledge that children with CP may access generic early child development programmes in their fourth year, provided by specialist, trained teachers, in the form of play-based programmes for 3 to 6 hours per week before starting formal schooling (30h per week) from the age of 5 years.…”

“…7,8 When considering each school-readiness domain individually, the literature has demonstrated that in 5-year-old children with CP half present with one or more activity limitations in oromotor function and/or communication 13 and 16% are non-verbal. 13,14 Cohort studies of preschoolage children with CP have also addressed the domains of physical performance across the spectrum of severity in self-care 16 and social functioning. 15 There is a paucity of cross-sectional data in this age group about cognitive skills and general knowledge.…”

“…The full study protocol, including ascertainment and recruitment methods for the entire prospective cohort study, has been published. 16 Children were eligible for inclusion in this study if they were 48 months or older. All motor types and functional abilities were included.…”

“…18 Children were assessed for motor type and GMFCS by two physiotherapists. 16,19,20 SES was calculated using the Socio-Economic Indexes for Areas Index of Relative Disadvantage, which uses postcode of residence to categorize into scores, with lower scores indicating areas of lower SES. …”