There is a demand for adult services to support individuals with ADHD in managing their condition during early adulthood. Few studies have addressed the proportion of young people with ADHD who have successfully transitioned from child to adult support services. Furthermore, previous studies are unlikely to be generalisable, as they have only considered small geographical areas. This study aimed to estimate the incidence of young people across the UK and Republic of Ireland requiring transition from a child and adolescent to an adult support service for management of ADHD. Additionally, this study sought to estimate the incidence rate of young people experiencing a successful or optimal transition to adult* services.
Consultant paediatricians and child and adolescent psychiatrists reported the number of eligible cases on a monthly basis through the British Paediatric Surveillance Unit and the Child and Adolescent Psychiatry Surveillance System between 1 November 2015 and 30 November 2016. Eligibility criteria included the following:
- Patients must have had a clinical diagnosis of ADHD and been under the care of child and adolescent mental health services or paediatric services (reviewed within 6 months of reaching the upper age limit of the child service).
- Patients must have required, and been willing to take, medication to manage ADHD symptoms after reaching the transition age of the child service.
- Patients with comorbid disorders were eligible if their prescribed medications were for ADHD only in adulthood.
If patients were deemed eligible by investigators, clinicians completed a screening questionnaire and a follow-up questionnaire 9 months later to ascertain transition outcomes.
In total, 614 patients were reported by 249 different clinicians, the baseline questionnaire was returned for 377 (61%) patients, and 315 of these were eligible for inclusion in the study. Patients were mostly white British (91%) and predominantly male (77%); the modal age boundary between child and adult services was 18 years (age range: 14–19 years). Patients reported were aged between 14 and 20 years; most (85%) were aged 17–19 years at the point of referral for transition to adult services. The follow-up questionnaire was returned in 247 (78%) cases. Among those aged 17–19 years, 269 patients were eligible for transition, and successful transition was achieved for 51 patients. For patients aged 17–19 years, the adjusted incidence rate for eligibility for transition to adult services was 202.9–511.2 per 100,000; however, the adjusted incidence rate for successful transition was only 38.5–96.9 per 100,000.
Approximately half of the 315 eligible patients were referred to specialised adult ADHD services (n = 163), 81 were referred to adult mental health services, and 54 were referred back to primary care or other services. The remaining patients were either not referred to adult services or referral details were unknown (n = 17). Of the 247 patients for whom a follow-up questionnaire was completed, referrals were accepted for 158 (64%) patients; however, only 22% of patients attended their first appointment. Reasons cited included: patient disengagement and no longer wanting to take medication (n = 3), the adult services were closed to new referrals due to lack of resources or long waiting lists (n = 4), lack of funding (n = 1) and referral did not meet service criteria (n = 1); no reason for failed transition was reported for 46 patients.
Clinicians reported that the patient was involved in the planning of the transition process in 93% of cases, and that a parent or carer had been involved in 80% of cases. However, only 6% of paediatricians and 10% of psychiatrists reported that patient transition met all five National Institute for Health and Care Excellence (NICE) pre-transition criteria† for an optimal transition, and only 2% of paediatricians and 10% of psychiatrists reported that patient transition met all nine NICE post-transition criteria.‡ Psychiatrists reported greater access to (81% vs 39%, respectively) and use of (66% vs 36%, respectively) organisational transition protocols than paediatricians.
This study had some limitations. Registration to receive monthly reporting cards was voluntary for clinicians; therefore, not all relevant patients would have reached the study. The authors acknowledged that the incidence rates reported here may need to be updated soon, as a rise in prescriptions could mean that more patients are benefiting from ADHD medication and may wish to continue taking it. This study also likely underestimated the true need for adult services, as patients were only considered eligible for transition if they required and wanted to continue with medication.
The authors suggested that disengagement from support services and/or medication and a lack of appropriate services could all contribute to a low rate of transition success. The authors also postulated that low turnout at first appointment may have been a result of physicians driving referral, rather than it being a decision made by patients. The authors suggested that these findings highlight poor adherence to NICE guidelines for an optimal transition between child and adult ADHD services, and concluded that better policies and strategies are required to support young adults with ADHD.
*A successful transition was defined as acceptance of referral to adult services and the patient attending the first appointment, whereas an optimal transition was defined according to NICE guidelines and required patient involvement, joint planning meetings, information sharing and continuity of care
†NICE pre-transition criteria included: information sharing, young person involvement, planning meeting, planning and agreeing on a care plan, and a handover period
‡NICE post-transition criteria included: patient/carer involvement, information sharing, agreeing on a care plan, joint working before transfer, alignment of assessment procedures, continuity of care, consistency of care, consideration of the appropriate service, and clarity of funding and eligibility
Eke H, Ford T, Newlove-Delgado T, et al. Transition between child and adult services for young people with attention-deficit hyperactivity disorder (ADHD): findings from a British national surveillance study. Br J Psychiatry 2019; Epub ahead of print.