Background Transition is the purposeful, planned movement of adolescent and young adults with congenital heart disease to the adult cardiac services. It is not yet an established service across other level three CHD centres. Following a serious incident, a transition clinic for paediatric cardiology patients with complex congenital heart disease was set up at our centre in May 2019. This audit was undertaken to review the existing transition and transfer process of paediatric cardiology patients to adult cardiology services.
Objectives Our aim was to provide an overview of current transitional care for patients with CHD and to evaluate the process to aid successful transition from paediatric to adult cardiology services according to NICE Standards.
Methods Patients aged 16 to 20 years who had been under paediatric cardiology services at our centre were included. Electronic notes were reviewed retrospectively in October 2020. Current set up has two transition clinics per year attended by a PEC, Paediatric cardiologist and a dedicated ACHD nurse specialist to support. Data was collected on diagnosis, whether under paediatric or adult cardiology services, route of referral, whether patient had been reviewed by adult services or they did not attend the appointment.
Results There were 106 patients aged 16 to 20 years under the care of paediatric cardiology services. Of these, 58 patients (55%) were under the care of paediatric services. 48 patients (45%) had been referred to adult cardiology services.
31 (65%) patients were referred to adult services following a standard paediatric clinic appointment including 4 patients with complex CHD. 3 (6%) patients were referred directly with a letter without a paediatric clinic appointment. 14 (29%) patients were referred via transition clinic. Overall, 14% (15) patients of 16-to-20-year olds had been reviewed in transition clinic. 3 patients (16%) did not attend appointments with adult services following transition. These patients were not seen in transition clinic prior to transfer.
Conclusions The majority of patients were seen in a paediatric cardiology clinic to discuss transfer process to adult services, even if not in a formal transition clinic. It is vital to educate adolescent patients with CHD to take charge of their health with a structured transition programme. The DNA rate of patients following transfer to adult services is a potential cause for concern and we need a robust policy in place to address this issue. It is important to determine patients are being given appropriate information and support and we recommend undertaking a patient survey. In long-term, we plan to expand and offer the transition clinic service to CHD patients as per the NICE standard.
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