Introduction

Public health indicators play an important role in decision and policy making.

Reliable population-based data on children with Cerebral Palsy (CP) are routinely collected by registries and pooled in a central database as part of the Surveillance of CP in Europe (SCPE).

The SCPE database contains a set of 65 items, reported in a harmonised way. The items cover basic, medically relevant data on the patient and of the mother, clinical data about cerebral palsy (such as CP classification, motor function classification), associated impairments (speech, intellectual, visual, hearing), other diseases (epilepsy, syndromes, cardiac anomalies), treatment (-ostomy, therapeutic cooling), and neuroimaging.

The scope behind this collection is primarily to disseminate knowledge about CP through epidemiological data, develop best practice in monitoring trends in CP and provide a framework for collaborative research.

Using these data, the SCPE network established a set of indicators that can help to analyze the patient population in Europe for informing policymakers, developing healthcare strategies, and monitoring policy implementation.

The six indicators were designed to inform on the following areas: a) widespread of CP in Europe, b) disability, c) access to services, d) preventive health strategies.

A general description of the methodology is presented here.

Widespread of CP in Europe

Cerebral Palsy (CP) is the most common childhood-onset motor disability. It arises from a diverse range of causes not up all of which are still fully understood, and presents with a wide spectrum of disability.

The prevalence of CP (i.e., the number of people affected with CP in a given population) reflects the extent of the disease in a population. It complements the perinatal indicators available at country level and, together with neonatal mortality rates, provides information on perinatal policies and practices. In this respect, it is a recommended PERISTAT indicator that informs on long-term outcomes for the child. It should be interpreted in light of what is known about the causes and risks factors and their respective contribution to explaining CP. The trend in prevalence illustrates the changing epidemiology of CP in the European population.

The following graph shows the time trend of the overall prevalence of CP calculated per 1,000 live births using data from the SCPE registries. Prevalence is presented as a 3-year moving average to smooth out short-term fluctuations. Further technical details on the calculations can be found here.

The risk of CP depends on gestational age. Thus, the prevalence is much higher in preterm (<37 weeks’ gestation) than in term (≥37 weeks’ gestation) infants. Because the underlying mechanisms during intrauterine life or at the newborn period are different, separate examination of these two groups is of particular importance, and may facilitate improved prevention and treatment of CP.

The following graph shows the time trends of prevalence of CP among preterm and term-born children. The prevalence is calculated per 1,000 live births in each group. To smooth out short-term fluctuations, prevalence is presented using a 3-year moving average. Further technical details on the calculations can be found here.

By clicking on its legend, you can choose to hide the curve of one of the gestational age group, so that you can zoom on the curve of the other gestational age group.

Disability

Children with CP have multiple health care needs. Motor impairment leading to long-term functional limitations, and associated comorbidities such as cognitive, sensory, communicative, and intellectual impairments, speech disturbance, epilepsy, and nutritional problems explain why this population requires multidisciplinary, comprehensive, and coordinated care for the continuous monitoring and management of their condition. A better understanding of their disability profiles could help policy makers and those responsible for health and other services to take these increased needs into account when planning preventive and/or treatment services.

Motor functional abilities and the need for mobility devices as described by the Gross Motor Function Classification System (GMFCS) are distributed differently by CP subtypes, which are defined by their neurological characteristics (spastic, dyskinetic and ataxic). The data reported here are those collected at approximately 5 years of age. Further details on the methodology are available here.

CP registries routinely collect information on the occurrence of severe deficits and morbidities associated with motor restrictions. These frequencies are reported below according to the level of gross motor function impairment. Although it is important to monitor the most severely affected children, mild associated deficits (that are not shown here) should also be considered for the cumulative burden to both patients and health care systems.

Further details on the methodology are available here.

Access to services

To help understand how CP affects a particular child, it is internationally recommended that all children with CP undergo a standard evaluation of their brain (for example magnetic resonance imaging (MRI)).

MRI provides a detailed examination of brain structure. It allows to identify the most likely pathogenic mechanism in relation to the timing of brain insult, as well as to explain the severity of the underlying functional profile in affected children. MRI is therefore considered an important part of the initial diagnostic evaluation, even though CP is a clinical diagnosis.

Neuroimaging, performed during or after the neonatal period, can be considered an indicator of access to resources, providing insights into health organization and policies.

The following graph shows:

1. the proportion of children with CP with at least one neuroimaging (ultrasound, CT scan and/or MRI) reported by each registry and
2. the sub-proportion of children with CP with at least one MRI reported.

Further details on the methodology are available here.

Preventive health strategies

While CP is most commonly associated with brain injury occurring before or at birth, a small number of children develop CP arising from an insult that occurs after the first month of life and within the first two years, usually referred to as CP of postneonatal origin.

CP of postneonatal origin is a very rare condition. However, most of the postneonatal causes are preventable. Head injury, infection and near-drowning are some examples. CP of postneonatal origin is therefore particularly interesting for examining the effectiveness of public health interventions or strategies.

The following graph shows the time trends of the overall prevalence of CP of postneonatal origin calculated per 10,000 live births using data from SCPE registries.

To smooth out short-term fluctuations, prevalence is presented using a 3-year moving average. Further details on the methodology are available here.