Cerebral palsy diagnosis and treatment in the 2020’s – global perspective

Administrator: Antigone Papavasiliou , Greece

Dr ANTIGONE PAPAVASILIOU
IASO CHILDREN'S HOSPITAL
theon@otenet.gr
Needs and Inequalities in Health Care, Education and Employment in Cerebral Palsy
Individuals with developmental disabilities face many barriers and disadvantages. In Cerebral Palsy (CP) inequalities in health care have been investigated mainly as a function of socioeconomic status; disadvantages in education, employment, autonomy and self-management have not been adequately explored either in developed or in resource-limited countries. Inequalities need to be known and addressed because they have implications for policy and practice. Furthermore, it is important to address the gap that exists between advanced research generated in the developed world and the implementation of realistic changes in policy and practice that may affect those with CP globally.
The aims of the presentation are: a. To present data on the availability of health services and on effective policy development and implementation for equal opportunity in health care, education, autonomy and employment in people with Cerebral Palsy both in the developed world, as well as, in resource-limited countries. b. To describe the knowledge derived from epidemiological databases that may be utilised by stakeholders and policy-makers for effective planning and implementation of targeted strategies for the prevention of Cerebral Palsy around the world. c. To discuss remediable sources of inequalities in health care and education.

Dr SANDRA JULSEN HOLLUNG
The Norwegian University of Science and Technology, NTNU, Trondheim, Norway.
Sandra.Julsen.Hollung@siv.no
Cerebral Palsy Epidemiology
In this symposium, we will present the most up-to-date knowledge on the etiologies and risk factors for cerebral palsy (CP) as well as the current prevalence of CP in high income countries. The information will be derived from well-established epidemiological registries and follow-up programs that systematically collect data on individuals with CP in Europe, North America and Australia. Epidemiological data in these populations are continually being used to design, implement and monitor healthcare strategies and policies. This includes the implementation and monitoring of targeted strategies for the prevention of CP, as well as treatments and interventions that are aimed at optimizing function and preventing complications for persons with CP. As an example, some countries are now reporting a reduction in the prevalence and severity of CP, which is mainly considered to be the result of improvements in antenatal, obstetric and neonatal care (e.g. magnesium sulfate for mothers at risk of preterm birth, improved methods of fetal monitoring during labor and therapeutic hypothermia treatment for babies born at term with hypoxic ischemic encephalopathy). Although providing this information is important to increase awareness and understanding about the causes, risk factors and prevalence of CP across geographical areas, differences in data collection and local traditions and priorities in the care of children with CP must also be taken into consideration.
 

Professor PRATIBHA SINGHI
Medanta, The Medicity, Gurgaon, Haryana, India
doctorpratibhasinghi@gmail.com
CP diagnosis and treatment in the 2020s in resource limited countries
Most children with cerebral palsy (CP), live in resource limited countries. Early identification of CP is essential to provide early intervention. Developmental surveillance and screening of high risk children is essential to identify children at risk of CP. Several well validated developmental screening and assessment tools are available in developed countries. An important challenge is in using these tools in resource constrained settings as they are often not culture -free, need skilled professionals, take a long time to administer, and translation licenses are very expensive. Some tools have been developed in resource limited countries that are locally validated and do not require highly trained professionals for administration. However, this often leads to a compromise in their sensitivities and specificities.
The other important challenge is access to institution-based rehabilitation services. Community based rehabilitation with the use of low- cost aids and appliances is an option. Another model is that of providing home based rehabilitation with training and active involvement of parents in their child’s therapies. Local low cost adaptation of established therapies can be helpful. Inclusion of children with CP in the society, increasing awareness about disability and training of grass root workers are other challenges that need an innovative approach including the use of telemedicine, in countries with limited resources.
 

Professor CATHERINE ARNAUD
Toulouse University, France
catherine.arnaud@univ-tlse3.fr
Public health indicators in health policy decision-making
Public health indicators (PHIs) play an increasingly important role in health policy decision-making at the population level. In this perspective, routinely collected data from population-based registries can be used to inform policymaking and help analyze the patient population, design healthcare strategies, and monitor their implementation. Although cerebral palsy is the commonest physical disability in children, very little is known about its impact. Reliable data on children with cerebral palsy have been routinely collected for many years as part of the Surveillance of Cerebral Palsy in Europe (SCPE) network. Their use has been extended beyond research to provide policy makers with best available scientific evidence. Thus, public health indicators have been designed and their definition discussed within the network. Criteria for the selection of registries and data suitable for analyses were defined. Sensitivity analyses were performed to check the stability of the results according to different input options. We will report on the definition, implementation, results of PHIs for cerebral palsy, and their possible interpretation. When PHIs are used to compare performance across geographical areas, we will discuss how differences in data collection and primary scope between registries, as well as local tradition and priorities in the care of children with CP, should be taken into account.