Aims The surveillance study is one stream of the ADHD in transition between children’s services and adult services (CATCh-Us) study and is run in collaboration with the British Paediatric Surveillance Unit (BPSU) and the Child and Adolescent Psychiatry Surveillance System (CAPSS) across the United Kingdom. It aims to quantify the need for young people with ADHD to transition from children’s to adult services, describe this group of young people, estimate the proportion that successfully transition and describe the proportion experiencing optimal transition.
Methods Starting in November 2015 for 13 months, paediatricians and psychiatrists registered with BPSU/CAPSS (n=4500) reported monthly any patients seen with a diagnosis of ADHD, within 6 months of the age boundary of the service, requiring transition to an adult service to continue their ADHD treatment and supervision. All clinicians reporting a case received a questionnaire to confirm eligibility and to gather further information. A follow up questionnaire was sent nine months after notification of an eligible case to establish the details and outcome of the transition.
Results 228 eligible cases were reported via BPSU and 138 via CAPSS, with initial questionnaire response rates of 91% and 67% respectively. Follow up questionnaire response rates were 67% and 60% respectively. There were no duplicate cases reported across both systems. Preliminary results indicate poor transition processes with less than 25% of clinicians holding a transition planning meeting, only 25% having a handover period and less than 50% having the referral to an adult service accepted; 50% were referred to a specialist adult ADHD service and 12% to primary care.
Conclusion Results indicate that patients requiring transition are not experiencing a smooth or successful process. The effectiveness of using a surveillance study methodology to estimate the incidence of transition is reported, as well as study findings. It is likely that results are an underestimate of the incidence of cases requiring transition to an adult service; it relies on clinicians reporting regularly and accurately, not all clinicians treating ADHD patients are registered with BPSU or CAPSS, and patients can be seen by other professionals not reporting via these systems.
Funding acknowledgement This project was funded by the National Institute for Health Research – Health Services and Delivery Research programme (project ref: 14/21/52)
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