Healthcare data linkage helps bridge the precarious transition gap from paediatric to adult services for young people with long term conditions.
Up to the age of 16, children in the UK with long term health conditions receive ongoing healthcare, often by specialist paediatricians. But from age 16 onwards, the healthcare system views them as adults and transition to adult healthcare follows. This transition period is not only disruptive to the young people, but is also a source of concern about care standards that warranted inclusion in reports from the Care Quality Commission and the Chief Medical Officer for England.
The adult system of care is often overseen by the family GP which can lead to reduced quality of care, particularly if the GP is unfamiliar with the (sometimes, quite rare) conditions and with the young person. This is further exacerbated by new difficulties for young people being able to access the care they need. For example, a young person who once received regular physiotherapy sessions on a continuous basis would now need to try and book the sessions in discrete blocks.
As a result, many young people may have different use of healthcare after transition to the new rules. This is particularly true for unplanned hospital visits, such as to Accident & Emergency Departments or for emergency inpatient admissions.
Previous research has looked at changes in healthcare at the point of transition, but is generally limited by one of two factors. The dataset used may be too small or not representative of the general population. If larger, representative datasets are used, they lack information on when transition takes place so a simple age cut-off is often used, with a risk of misclassification.
Lead author Dr Stuart Jarvis, a Research Fellow at the Martin House Research Centre, University of York explained that "A frustration in trying to research the transition from children's to adult healthcare has been the inability to identify when the transition takes place. This paper helps to solve this issue, enabling better quality research into the changes that take place when children with long term conditions become - in the healthcare system, at least - adults."
This new study addresses this problem by developing and assessing methods of estimating the point of transition from routinely collected healthcare records. It allows large, nationally representative data to be used without needing to resort to a simple age cut-off to assign young people to adult or paediatric healthcare categories.
The team classified inpatient and outpatient records in England as either paediatric or adult care based on treatment specialty codes and the specialty of the consultant in charge of care.
Finally, the team used three different ways to find the transition point to adult care, comparing them with each other and a simple age cut-off. This study has successfully demonstrated that this new approach could help to detect changes in young people's use of healthcare during transition. This can be used to identify problems and find ways of improving the transition.
Dr Stuart Jarvis, Research Fellow, Martin House Research Centre, Department of Health Sciences University of York
Jarvis, S. W., Richardson, G., Flemming, K. and Fraser, L. (2021) “Estimation of age of transition from children’s to adult healthcare for young people with long term conditions using linked routinely collected healthcare data”, International Journal of Population Data Science, 6(1). doi: 10.23889/ijpds.v6i1.1685.