C. Kerr1, K. McConnell1, E. Livingstone2, O. Perra1
1Queen's University Belfast, School of Nursing and Midwifery, Belfast, United Kingdom, 2Adult CP Hub, London, United Kingdom
Background: Although research in cerebral palsy (CP) has traditionally focused on children, the majority of this population survive into adulthood and require ongoing access to many health and social care services throughout life. Barriers to successful transition from paediatric to adult services, insufficient service provision for adults with CP and lack of continuity of care have been reported. Understanding the prevalence and clinical characteristics of CP in adults will help inform planning and delivery of health and care services.
Purpose: To report prevalence and clinical characteristics of adults with CP in one region of the United Kingdom.
Methods: Cross-sectional, population-based study using the Northern Ireland Cerebral Palsy Register (NICPR). The NICPR adheres to Surveillance of Cerebral Palsy in Europe guidelines and processes regarding eligibility and classification of cases. All validated cases known to the NICPR, born 1981-2001 and alive and resident in the region at the time of accessing adult health services were included (age 19 years+). The prevalence rate of CP was calculated per 1000 age-matched population. Descriptive statistics were used to summarise data relating to CP type, walking ability, upper limb function and associated impairments.
Results: Of the 1369 cases born 1981-2001 and known to the NICPR, 151 were excluded because they had died (n=113) or moved out (n=38) before the age of accessing adult services. Thus 1218 cases aged 19-39 years were included in the study sample (93% of paediatric registered cases, n=1218/1369). The period prevalence of CP in adults (born 1981-2001) was 2.38 per 1000 population. The majority of cases had spastic CP (n=1132/1218, 93%) with 47% being unilaterally affected (n=535/1132) and 53% having bilateral involvement (n=597/1132). Almost a quarter of the population used a wheelchair (269/1218, 22%) and almost one third required assistance of another person to eat and/or dress (n=365/1218, 30%). More than half of cases had associated impairments such as a history of seizures, communication, or intellectual impairment. Over 25% had some form of visual impairment. Hearing and feeding difficulties were recorded in 7% and 16% of cases, respectively. Of the 1218 cases included, 46 died in adulthood. These cases had more complex CP: 39 cases had bilateral spastic CP and 40 cases were wheelchair-users.
Conclusion(s): The study demonstrates that over 90% of paediatric CP cases will require health and care services in adulthood, with approximately one third having significant ongoing health, care and rehabilitation needs.
Implications: Population-based registers, such as the NICPR, provide useful estimates of numbers and needs of people with CP to facilitate care planning and service delivery. Supported transition from paediatric to adult services and ongoing access to health, care and rehabilitation services in adulthood is required for people with CP to optimise and maintain activity and participation. Further research describing function over time in adults with CP is required, as is research documenting rehabilitation, health service use and unmet needs in this population.
Funding, acknowledgements: The NICPR is funded by the Public Health Agency, Northern Ireland.
Keywords: cerebral palsy, rehabilitation, health planning
Topic: Disability & rehabilitation
Did this work require ethics approval? Yes
Institution: Queen's University Belfast
Committee: Office for Research Ethics Committees Northern Ireland
Ethics number: 18/NI/0180
All authors, affiliations and abstracts have been published as submitted.
