Children and young people with life limiting conditions (conditions that either lead to or threaten premature death) are cared for by specialist paediatric services up to age 16, but from 16 years of age they transition to adult services, often with care coordinated by a GP. There are concerns about this; adult service providers may be unfamiliar with the young person and with the (in some cases very rare) conditions. There may be a lack of equivalent adult services. There may be lapses in related services, such as physiotherapy. As a result, there may be increases in hospital care (particularly emergency care such as A&E attendance or emergency inpatient admission) either due to worse management of conditions or due to patients and parents seeking care from a more familiar hospital setting rather than consulting with their GP.
We will determine the size of any change in levels of hospital care and numbers of GP consultations across the transition, using routinely collected healthcare records, and compare these changes to those seen for children with non-life-limiting chronic conditions and without chronic conditions. We will look at whether different frequencies of GP consultations are associated with different levels of emergency hospital care. Finally, we will look at the costs of emergency hospital care and GP consultations (to the NHS and to patients and their families) before and after transition. This information will be useful to assess the potential for future interventions to be cost effective.
Life limiting conditions (LLC) are becoming increasingly prevalent among children and young people. Currently children with a LLC receive specialist paediatric care before transitioning to adult services (typically from 16 years of age onwards) coordinated by a GP. Increasing life-spans mean that this is an increasingly common occurrence. Problems around transition have been recognised, but there is a lack of quantitative research on healthcare use and associated costs.
This study involves quantitative secondary data analyses of routinely collected healthcare data (all individuals aged up to age 23 years in CPRD GOLD with linked HES data) to:
1. determine, using quasi-experimental methods (interrupted time series, difference in difference, regression discontinuity), the extent of any change in GP consultations, emergency and planned inpatient admissions and Accident and Emergency (A&E) attendances among young people with LLC transitioning from paediatric to adult care and compare these changes to those observed for children with non-life-limiting chronic conditions and without chronic conditions at the same ages.
2. determine how changes in emergency care at the transition relate to frequency or regularity/consistency of GP consultations before, during and after the transition, using multilevel regressions from the Poisson family and what demographic factors influence this GP contact.
3. estimate the costs associated with changes in emergency and GP care after the transition compared to before the transition and to changes for the non-life-limiting chronic conditions and without chronic conditions groups.
Numbers, per person year, of GP consultations, emergency and planned inpatient admissions and A&E visits
- Regularity of GP appointments (measured by coefficient of variation: standard deviation of gaps between appointments divided by mean gap between visits)
- Consistency of GP seen (measured by usual provider of care index: share of visits that are with the most commonly seen GP)
Stuart Jarvis - Chief Investigator - University of York
Stuart Jarvis - Corresponding Applicant - University of York
Catherine Hewitt - Collaborator - University of York
Lorna K Fraser - Collaborator - University of York
HES Accident and Emergency;HES Admitted Patient Care;HES Outpatient;ONS Death Registration Data;Patient Level Index of Multiple Deprivation