Clinician perspectives on the use of National Institute for Health and Care Excellence guidelines for the process of transition in Attention Deficit Hyperactivity Disorder

Abstract

Background: The UK National Institute for Health and Care Excellence (NICE) clinical guidelines recommends the following steps in the transition from child to adult services for young people with attention deficit hyperactivity disorder (ADHD): reassessment before and after transition, transition planning, formal meeting between services, and involvement from young person and carer, completed by age 18.

Methods: A UK surveillance study asked clinicians to report young people on their caseloads with ADHD in need of transition to adult services in 2016 to support their continued access to medication need. Clinicians reported young people as they aged to within 6 months of the transition boundary, a prospective questionnaire prior to transition asked about intended transition and the use of local transition protocols. A retrospective questionnaire sent 9 months later established which steps recommended by NICE were followed during transition. Clinicians (38) working in child or adult services were interviewed about their experiences of transition and the use of NICE guidelines during transition and were analysed using a framework approach.

Results: Information was shared between services in 85% of the 315 identified transition cases. A joint meeting was planned in 16% of cases; joint working before transfer occurred in 10% of cases. Clinicians were aware of NICE guidelines; they had mixed views on whether (local) guidelines or protocols were helpful. The main reason for not following guidelines was workload and resources: "NICE recommends stuff that is miles above what we will ever be able to provide".

Conclusions: Clinicians involved in the transition process of young people with ADHD judged NICE guidelines to be unrealistic given the current limited resources and service organization. More open dialogue is needed for recommendations on service models to bridge the gap between guideline recommendations and what is viewed as feasible and how implementation of guidance is funded, monitored, and prioritized. This may lead to valuable changes in the consultation process, for example, consideration of a layered (gold, standard, and minimal) system for some NICE guidelines.

Keywords: ADHD; clinical guidelines; qualitative; surveillance; transition.