Transition between child and adult services for young people with ADHD: findings from a British national surveillance study

This is the author accepted manuscript. The final version is available from Cambridge University Press via the DOI in this record.Data Availability: Data is currently stored securely by the University of Exeter Medical School, under embargo until the end of the CATCh-uS project (2019).Background: Optimal transition involves continuity, joint care, planning meetings and information transfer. To plan services, commissioners and service providers need data on how many people require that service. Although Attention-Deficit/Hyperactivity Disorder (ADHD) frequently persists into adulthood, evidence is limited on transitions between child and adult services. Aims: To estimate the national incidence of young people taking medication for ADHD that require and complete transition, and describe the proportion that experienced optimal transition. Methods: Surveillance over twelve months using the British Paediatric Surveillance Unit and the Child and Adolescent Psychiatry Surveillance System, including baseline notification and follow up questionnaires. Results: Questionnaire response was 79% at baseline and 82% at follow up. For cases aged 17-19, incident rate (range adjusted for non-response) of transition need was 202-511 per 100,000 people aged 17-19 per year, with successful transition of 38-96 per 100,000 people aged 17-19 per year. Cases were mostly male (77%) with a comorbid condition (62%). Half were referred to specialist adult ADHD and 25% to general adult mental health services; 64% had referral accepted but only 22% attended a first appointment. Only 6% met optimal transition criteria. Conclusions: As inclusion criteria required eligible cases to be on medication, these estimates will represent the lower limit of the need for transition. Two critical points were apparent; referral acceptance and first appointment attendance. The low rate of successful transition and limited guideline adherence indicates significant need for commissioners and service providers to improve service transition experiences.National Institute for Health Research (NIHR