There are more children and young people with medical conditions that will shorten their lives (called Life Limiting Conditions or LLC) (~40,000) than diagnosed with diabetes (~23,000) in England. They have complex health care needs and during childhood have their health care coordinated by specialist paediatricians. It is unusual for the child's GP to be actively involved despite these children also having normal childhood illnesses which could be potentially be treated by the GP rather than specialists. The GP is also in the unique position of being able to offer accessible and timely support to parents and other family members. However, there is no research published from the UK on the current practices, and the potential role of GPs, in the care of CYP with a LLC. Many of these CYP are often transferred back to the GP to coordinate their care when they are no longer eligible for paediatric services.
This study will analyse routinely collected healthcare data from the Clinical Practice Research Datalink and data from hospital admissions to NHS hospitals in England. The analyses will determine the prevalence of children and young people with a LLC in the CPRD dataset and assess whether CYP who have contact with their GP more regularly have reduced numbers of hospital admissions and A&E attendances.
The prevalence of children and young people (CYP) with a Life-Limiting Condition (LLC) is increasing with more than 40,000 CYP currently living with a LLC in England [1, 2]. LLCs are those for which there is no reasonable hope of cure and from which CYP will die. CYP with a LLC typically have complex health care needs and during childhood their care is coordinated by tertiary or community paediatricians and it is unusual for the child's GP to be actively involved. However, the care of these individuals is often transferred back to the GP to coordinate their care when they are no longer eligible for paediatric services. Given that many of these children are now living longer, sometimes into adulthood, this is an increasingly common scenario [3]. This study involves quantitative analyses of routinely collected healthcare data including the Clinical Practice Research Datalink and inpatient hospital data to:
1. Determine the prevalence of children with LLC in primary care data.
2. Describe patterns of GP usage and involvement in children and young people with a LLC in England (0-25 years)
3. To assess the association between the number and regularity of contacts with GP and unplanned hospital admissions/readmissions, A&E attendances and place of death in CYP with a LLC using poisson regression modelling
4. To assess whether there is evidence of increased GP contacts usage or inpatient hospital admissions associated with the transition from paediatric care
The primary health outcome is the number of emergency inpatient hospital episodes. The secondary health outcomes are i) the number of hospital readmissions ii) the number of A and E attendances (analyses only undertaken from 2007/8 onwards due to availability of the A & E data) iii) the place of death (if death has occurred)(available from the CPRD GOLD dataset)
Lorna K Fraser - Chief Investigator - University of York
Lorna K Fraser - Corresponding Applicant - University of York
Bryony Beresford - Collaborator - University of York
Catherine Hewitt - Collaborator - University of York
Roger Parslow - Collaborator - University of Leeds
Sarah Mitchell - Collaborator - University of Warwick
Stuart Jarvis - Collaborator - University of York
HES Accident and Emergency;HES Admitted Patient Care;HES Outpatient;ONS Death Registration Data;Patient Level Index of Multiple Deprivation