Informing health and care services for people with cerebral palsy on the island of Ireland

Claire Kerr, Jennifer Ryan, Jennifer Fortune, Manjula Manikandan, Oliver Perra, Karen McConnell, Monica Acheson, Rory O'Sullivan, Owen Hensey, Michael Walsh

Research output: Contribution to conferencePosterpeer-review

Abstract

Introduction

Cerebral palsy (CP) is a lifelong condition caused by damage to the developing brain. It affects over 10,000 people on the island of Ireland. People with CP primarily experience problems with movement and posture, however associated impairments of cognition, hearing, vision, speech and epilepsy are common. Clinical presentation varies widely from mild problems to profound disability with high associated health and care costs however numbers and needs of people with CP are not captured by routine healthcare data coding. This presentation summarises (1) the impact of a population-based CP register, and (2) the healthcare needs of the CP population.



Methods

Prevalence of CP is robustly ascertained by the Northern Ireland CP Register (NICPR) held at Queen’s University Belfast. This prospective, population-based register contains over 40 birth-years of data and is part of the Surveillance of CP in Europe network. Currently, there is no population-wide register of people with CP in Ireland, however, significant progress in understanding the health needs of the Irish CP population has emerged from mixed-methods research from the Royal College of Surgeons in Ireland (RCSI), in collaboration with the Central Remedial Clinic, the Health Services Executive (HSE), and underpinned by involvement with people with CP and parents.



Highlights or Results or Key Findings

NICPR data and research has (1) underpinned successful business cases for new clinical services; (2) developed cost-effective tools to describe CP that have been adopted internationally, improving communication between healthcare professionals and families and reducing clinical assessment burden; and (3) informed UK and international standards of care, for example, NICE guidelines and a UK National Confidential Enquiry. Data linkage projects have helped understand prescribing practices for pain and sleep medication in children with CP.

RCSI research has identified the diverse range of health services required by people with CP, the associated unmet needs of the population, and satisfaction with service provision. Transition from paediatric to adult health services was identified as an area of particular need: a multi-level response that considers the interactions between people, services and systems is required. Service providers’ and service users’ experiences highlighted the need for improved co-ordination, communication and collaboration between agencies.



Conclusions

Comprehensive, population-based case ascertainment across the island is required. Such data would optimise planning and delivery of health and care services to children with CP, aid preparation of young people with CP for transition, and permit development of services for adults based on need rather than demographics. This approach, underpinned by input from people with CP and their families, is required across jurisdictions, sectors and systems to reduce uncertainty and service fragmentation.





Implications for applicability/transferability, sustainability and limitations

A variety of research approaches were effectively integrated to develop an informed picture of prevalence, health service use and unmet needs in people with CP on the island of Ireland. Patient and public involvement informed all aspects of the research, including dissemination of findings and subsequent implementation into practice and policy. Findings from this research are used internationally and are contributing locally to development of recommendations and pathways for transition, in both NI and Ireland.
Original languageEnglish
Publication statusPublished - 23 Mar 2023
Event2nd All-Ireland Conference on Integrated Care - Dublin, Ireland
Duration: 23 Mar 2023 → …
https://integratedcarefoundation.org/events/aicic23-all-ireland-conference-on-integrated-care-23-march-2022-dublin-ucd

Conference

Conference2nd All-Ireland Conference on Integrated Care
Country/TerritoryIreland
CityDublin
Period23/03/2023 → …
Internet address

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