Using Routine Health Data to Assess Health Outcomes in the Transitional Care Period for Individuals Diagnosed with a Long-Term Condition in Childhood or Young Adulthood

Clinical guidelines surrounding transition from paediatric to adult health services are based on qualitative research. This study assessed whether routine datasets could provide empirical evidence for the need of transitional health care. Health outcomes were analysed for individuals diagnosed with type 1 diabetes (T1D) or cancer in childhood (under 15 years) or young adulthood (15
to 29 years) with up to 35 years of follow-up time, including mortality in the Yorkshire Register of Diabetes in Children and Young People (YRDCYP) using death certification data, HbA1c levels and hospitalisations for individuals receiving Continuous Subcutaneous Insulin Infusion (CSII) therapy in the Leeds Children and Young People’s Diabetes Service (LCYPDS) and hospitalisations in the Yorkshire Specialist Register of Cancer in Children and Young People (YSRCCYP) using hospital episode statistics.
Analysis from the YRDCYP showed evidence for higher mortality during the transitional care period due to diabetic ketoacidosis. Individuals diagnosed with T1D during the transitional care period (15 to 29 years) had higher mortality rates compared with those diagnosed in childhood. CSII therapy for T1D was found to significantly reduce HbA1c values for up to 4 years in the LCYPDS,
indicating it is an effective treatment option for managing T1D during the transitional care period.
In the YSRCCYP, a previous mental health admission increased the odds of an A&E attendance and non-attendance to an outpatient appointment. There was evidence of poorer adherence during the transitional care period compared with younger age groups. Attending an outpatient appointment increased the odds of
an inpatient admission by 50%, suggesting that missing an outpatient appointment could lead to less opportunity for referral for an inpatient admission.
Previous research into transition focused on ages under 25 years. This study showed that individuals over this age should not be overlooked. Sociodemographic factors should also be considered for targeted interventions.