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Implementation of early detection and early intervention service delivery in infants at risk for cerebral palsy to promote infants’ psychomotor development and maternal health

Periodic Reporting for period 2 - BornToGetThere (Implementation of early detection and early intervention service delivery in infants at risk for cerebral palsy to promote infants’ psychomotor development and maternal health)

Reporting period: 2021-07-01 to 2022-12-31

Despite advances in the medical management of high-risk pregnancies and deliveries, cerebral palsy (CP) remains the most common physical disability in childhood in high and low-to-middle income (LMIC). In addition, caregivers of children with CP are at higher risk of psychiatric issues, further increasing health and socio-economic burden to the families. In spite of the scientific advancements in early detection and intervention (EI) in CP, there is a lack of implementation into clinical service delivery. The overarching aim of the BORNTOGETTHERE program is to exploit current evidence on early detection and efficacy of EI for infants at high risk of CP by implementing the International Clinical Practice Guideline in Europe (Italy, Denmark, Netherlands), LMIC (Georgia, Sri Lanka) and hard to reach populations (Remote Queensland and Western Australia). It will provide a multifaceted knowledge translation approach focused on i) optimizing context-specific health programs for early detection of CP, thus reducing age at diagnosis and age at referral to EI; ii) optimizing early functional characterization of infants with CP, thereby fostering personalized EI and preventing secondary complications (i.e. hip dislocation) and iii) testing the implementation of integrated EI programs adapted to country-specific welfare systems. The protocol of service delivery will result from the adaptation of early detection and EI programs based on the proven, effective intervention strategies, and those that are included into ongoing research based on effectiveness shown with preliminary data. This framework will be validated in real life varying world conditions through a large implementation program and a multicentre parallel controlled trial. The main beneficiaries will include a wide range of stakeholders: not only concerned families and communities but also policy makers, public authorities, the media, and citizen groups to ensure the translation of evidence into routine practice.

The overarching aim of the BORNTOGETTHERE program is to exploit current evidence on early detection, characterization and intervention for infants at high risk of Cerebral Palsy (CP) by implementing the first International Clinical Practice Guideline1 in multiple sites in Europe (Italy, Denmark, Netherlands), in low- and middle-income countries (Georgia, Sri Lanka) and hard to reach populations (Remote Queensland, QLD and Western Australia, WA).
Specifically, we will improve maternal and infant health through the following three specific aims (Table 1.1). Aim 1: to improve health programs for the early detection (ED) of CP, in a context-specific way, thereby reducing age at diagnosis and age at referral to CP-specific early intervention programs.
Aim 2: to improve health programs for the early surveillance (ES) of associated impairments and functional limitations in infants with CP and mental health of their parents, in a context specific way, thereby fostering individualized early intervention delivery and prevention of secondary complications (e.g. hip dislocation) for infants, and provision of support for their parents.
Aim 3: to improve health programs of early intervention (EI) in infants with CP, in a context-specific way, thereby improving the outcomes of the infants (motor, cognitive and social-emotional development) and of their caregivers (mental health).
During the reporting period 0-18 month each of the Aims received appropriate attention in terms of effort toward achievement of the set-out goals. As planned by the project, much attention went to the organization, translation and adaptation of materials and planning of clinician trainings for each of the involved locations. The COVID-19 pandemic and related limits of travel activities and gathering possibilities forced the organization of the trainings to become different, moving much of the activities online. Delays in trainings were and, in some locations, continue to be experienced due to acute changes in healthcare and education management in many locations.
These delays, however, have allowed a re-organization and thorough revision or materials and modification of methods of delivery, including additional barriers and opportunities for improvement. The project Consortium, including all partners and third parties, have embraced the opportunities and are on track with the project aims regardless of needing more time for some of the specific tasks being carried out.
The impact of the project is on track, even with the delays that have been experienced due to the COVID-19 pandemic. Infact, the development of a more comprehensive e-learning platform, we expect, will have a more lasting and ongoing effect, as the project knowledge translation and implementation strategies can be replicated more easily and expand to other locations with significantly less effort that necessary for the current project.
Moreover, the family involvement and family organizations in the role of stakeholders has been stronger and more present than anticipated, we expect this will increase the impact of the activities of the project.
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