PREDICT-CP: study protocol of implementation of comprehensive surveillance to predict outcomes for school-aged children with cerebral palsy

• Published in: BMJ open 2017-07, Vol.7 (7), p.e014950-e014950
• Main Authors: Boyd, Roslyn N, Davies, Peter SW, Ziviani, Jenny, Trost, Stewart, Barber, Lee, Ware, Robert, Rose, Stephen, Whittingham, Koa, Sakzewski, Leanne, Bell, Kristie, Carty, Christopher, Obst, Steven, Benfer, Katherine, Reedman, Sarah, Edwards, Priya, Kentish, Megan, Copeland, Lisa, Weir, Kelly, Davenport, Camilla, Brooks, Denise, Coulthard, Alan, Pelekanos, Rebecca, Guzzetta, Andrea, Fiori, Simona, Wynter, Meredith, Finn, Christine, Burgess, Andrea, Morris, Kym, Walsh, John, Lloyd, Owen, Whitty, Jennifer A, Scuffham, Paul A
• Format: Article
• Language: English
• Subjects: Brain research; Caregivers; Cerebral palsy; Cerebral Palsy - diagnosis; Child; Children & youth; Classification; Cohort Studies; Communication; Costs; Health surveillance; Humans; Paediatrics; Population Surveillance; Preferences; Prognosis; Quality of life; Research Design; Well being
• ISSN: 2044-6055; 2044-6055
• DOI: 10.1136/bmjopen-2016-014950

ObjectivesCerebral palsy (CP) remains the world’s most common childhood physical disability with total annual costs of care and lost well-being of $A3.87b. The PREDICT-CP (NHMRC 1077257 Partnership Project: Comprehensive surveillance to PREDICT outcomes for school age children with CP) study will investigate the influence of brain structure, body composition, dietary intake, oropharyngeal function, habitual physical activity, musculoskeletal development (hip status, bone health) and muscle performance on motor attainment, cognition, executive function, communication, participation, quality of life and related health resource use costs. The PREDICT-CP cohort provides further follow-up at 8–12 years of two overlapping preschool-age cohorts examined from 1.5 to 5 years (NHMRC 465128 motor and brain development; NHMRC 569605 growth, nutrition and physical activity).Methods and analysesThis population-based cohort study undertakes state-wide surveillance of 245 children with CP born in Queensland (birth years 2006–2009). Children will be classified for Gross Motor Function Classification System; Manual Ability Classification System, Communication Function Classification System and Eating and Drinking Ability Classification System. Outcomes include gross motor function, musculoskeletal development (hip displacement, spasticity, muscle contracture), upper limb function, communication difficulties, oropharyngeal dysphagia, dietary intake and body composition, participation, parent-reported and child-reported quality of life and medical and allied health resource use. These detailed phenotypical data will be compared with brain macrostructure and microstructure using 3 Tesla MRI (3T MRI). Relationships between brain lesion severity and outcomes will be analysed using multilevel mixed-effects models.Ethics and disseminationThe PREDICT-CP protocol is a prospectively registered and ethically accepted study protocol. The study combines data at 1.5–5 then 8–12 years of direct clinical assessment to enable prediction of outcomes and healthcare needs essential for tailoring interventions (eg, rehabilitation, orthopaedic surgery and nutritional supplements) and the projected healthcare utilisation.Trial registration numberACTRN: 12616001488493