This government funded project has arisen from the findings that children and young people (CYP; 0-25 years) with chronic disability are more likely to die prematurely than those without. This finding warrants further investigation into why the death rate is higher among those with chronic disability and whether there are aspects of the health-care system that may be improved in order to reduce this number.
The study will use routinely collected healthcare records (e.g. hospital and GP practice consultations) to identify patterns of healthcare used by CYP with cerebral palsy. Cerebral palsy (CP) has been chosen as an index condition for chronic disability due to it having many different forms and related conditions. Emphasis will be placed on the transition from child to adult services, as well as the working relationships between different care settings (e.g. GP and secondary care) as transition between services has been shown to be particularly poor among this group.
The study will determine the extent to which analysing routinely collected datasets can contribute to the assessment of health needs and quality of care for children with CP.
Findings will inform healthcare professionals and policy makers as to how they can improve the quality healthcare for children with CP.
This healthcare assessment for children and young people with chronic disability has three main objectives. To explore:
1. the interface between different care settings for example primary and secondary care and health and social care;
2. the quality of care provision and
3. the transition between children and adult services.
This study will include CYP resident in England, Wales, Scotland and Northern Ireland, aged 0-25 years and identified via routinely collected data sources (over a 10 year time period (2004-2014)).
CPRD data will be linked to Hospital Admissions data (HES) and ONS data, for patients in England, to describe the reasons for and frequency of primary and secondary care contact in CYP. This data will be compared to those without CP. The care interface between primary and secondary care will be explored. Patterns of healthcare will be examined based on age, gender and social deprivation. We are aware that not all linkages are possible for all UK countries.
Data will be analysed using summary statistics, relative risk ratios with 95% confidence intervals will be calculated and chi squared tests carried out as appropriate.
Cerebral palsy(CP) diagnosis Pattern of primary care consultations in children with CP Patterns of referral to secondary care and nature of hospital admissions in children with CP
Alison Kemp - Chief Investigator - Cardiff University
Bethan Carter - Corresponding Applicant - Cardiff University
Ann John - Collaborator - Swansea University
Hywel M. Jones - Collaborator - Cardiff University
Melissa Wright - Collaborator - Cardiff University
Sophie Wood - Collaborator - Cardiff University
HES Admitted Patient Care;HES Outpatient;ONS Death Registration Data;Patient Level Index of Multiple Deprivation;Practice Level Index of Multiple Deprivation