Public health indicators for cerebral palsy: A European collaborative study of the Surveillance of Cerebral Palsy in Europe network

Author:

Arnaud Catherine123ORCID,Ehlinger Virginie12ORCID,Perraud Annie4,Kinsner‐Ovaskainen Agnieszka4ORCID,Klapouszczak Dana12,Himmelmann Kate5ORCID,Petra Mariana6,Rackauskaite Gija7,Lanzoni Monica4,Platt Mary‐Jane8,Delobel‐Ayoub Malika12ORCID

Affiliation:

1. CERPOP, UMR 1295 Toulouse University, Inserm, Paul Sabatier University Toulouse France

2. Childhood Disability Registry in Haute‐Garonne University Hospital of Toulouse Toulouse France

3. Clinical Epidemiology Unit University Hospital of Toulouse Toulouse France

4. European Commission Joint Research Centre Ispra Italy

5. Department of Pediatrics, Clinical Sciences Sahlgrenska Academy, University of Gothenburg Gothenburg Sweden

6. Department of Orthopaedics General Hospital of Syros Syros Greece

7. Child and Adolescent Medicine Aarhus University Hospital Aarhus Denmark

8. Norwich Medical School, University of East Anglia Norwich UK

Abstract

AbstractBackgroundPublic health indicators (PHIs) play an increasingly important role in health policy decision‐making. Although cerebral palsy (CP) is the commonest physical disability in children, its impact at population level has not been systematically measured so far.ObjectivesWe aimed to propose six PHIs for CP designed to annually document the extent of CP and effectiveness of perinatal organisation, the burden of this condition, access to health services and preventive health strategies in the post‐neonatal period and to report on the latest updated estimations using population‐based data routinely collected by European CP registries.MethodsThe study included children with CP born between 2002 and 2011. Harmonised data (number of cases, functional profile, imaging) were extracted from the Surveillance of Cerebral Palsy in Europe (SCPE) database. Eligibility criteria for analyses were applied separately for each indicator by selecting registries, birth years and CP cases. Current estimates were based on the last 3 birth years, while trends were reported over a 10‐year period. All analyses were descriptive. Sensitivity analyses were carried out to examine the stability of the results using various thresholds of percentages of missing values.ResultsAnalyses were performed on a total of 8621 children with CP from 12 to 17 SCPE registries. A decreasing prevalence of pre/perinatal CP overall, as well as in preterm and full‐term‐born children, was observed. The burden of the condition was strongly dependent on CP subtype and the presence of associated impairments. Access to brain imaging ranged from 80% to 100% depending on registries. The overall prevalence of post‐neonatally acquired CP was approximately 0.8 per 10,000 live births over the study period.ConclusionsPopulation‐based CP registries can provide data that are relevant for generating key outcomes of interest at the population level, thus potentially contributing to improving public health policies for children with disabilities.

Publisher

Wiley

Subject

Pediatrics, Perinatology and Child Health,Epidemiology

Reference25 articles.

1. Evidence-Based Public Health: A Fundamental Concept for Public Health Practice

2. World Health Organization.Global Reference List of 100 Core Health Indicators (plus Health‐Related SDGs).2018.

3. Mini-symposium — Public Health Observatories

4. EU Indicators and data.https://ec.europa.eu/health/indicators_data/overview_en

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