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

Abstract

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.