Clinical service use as people with Attention Deficit Hyperactivity Disorder transition into adolescence and adulthood: a prospective longitudinal study

Hanna Eklund,Jennifer Beecham,Tim Cadman,Hannah Hayward,Karen Glaser,Declan Murphy,James Findon,Kiriakos Xenitidis,Deirdre Howley,Philip Asherson

doi:10.1186/s12913-016-1509-0

Abstract

BackgroundWhile Attention Deficit Hyperactivity Disorder (ADHD) often persists into adulthood, little is known about the needs and service use among adolescents and young adults with ADHD. The present study followed-up a cohort diagnosed with ADHD as children and assessed their: 1) needs, 2) correlates of contact with clinical services, and 3) experiences of transition from child to adult health services.MethodsNinety one young people aged 14–24 were recruited from the UK subset of the International Multi-Centre ADHD Genetics (IMAGE) Project. Affected young people and parents conducted face-to-face interviews and self-completion questionnaires including a modified version of the Client Services Receipt Inventory, The Barkley’s ADHD rating scale, The Clinical Interview Schedule-Revised, and the Zarit Burden Interview. Changes in key need characteristics (e.g. ADHD symptoms and impairments) over a 3-year period were examined using fixed effect models. Generalised Estimating Equations (GEE) were used to explore how key characteristics (such as ADHD symptoms) were associated with contact with clinical services across the three years.ResultsAt baseline 62 % met diagnostic criteria for ADHD and presented with a range of ADHD related impairments, psychiatric comorbidities, and significant caregiver burden. While ADHD symptoms and related impairments lessened significantly over the three years, psychiatric comorbidities and caregiver burden remained stable. The strongest correlate of contact with clinical services was age (OR 0.65 95 % CI 0.49–0.84) with the odds of reported contact with clinical services decreasing by 35 % for each year increase in age at baseline and by 25 % for each year increase in age over time. Only 9 % of the sample had experienced a transfer to adult services, with the majority reporting unmet needs in healthcare transition.ConclusionsDespite continuing needs, few were in contact with adult health services or had received sufficient help with transition between child and adult health services. The main determinant of health service use for adolescents and young adults with ADHD is age – not needs. Service models should address the needs of ADHD individuals who are no longer children.Electronic supplementary materialThe online version of this article (doi:10.1186/s12913-016-1509-0) contains supplementary material, which is available to authorized users.

Highlights

While Attention Deficit Hyperactivity Disorder (ADHD) often persists into adulthood, little is known about the needs and service use among adolescents and young adults with attention deficit hyperactivity disorder (ADHD)
This study reported on the follow-up of children with a high risk of ADHD status in the United States and found that increased parental network support, ADHD symptoms, caregiver burden and lower stigma perceptions among youth were independently associated with increased health service use [23]
For the first time, we explored the experiences of the healthcare transition from both the young person’s and parent’s perspectives and investigated both needs and contact with clinical services among those with a childhood diagnosis of ADHD who were at transition to adolescence and young adulthood

Summary

Introduction

While Attention Deficit Hyperactivity Disorder (ADHD) often persists into adulthood, little is known about the needs and service use among adolescents and young adults with ADHD. Adolescents and young adults with ADHD are among those least likely to transfer from child to adult mental health services [13] This is not due to a lack of clear recommendations for the management of ADHD in adulthood that exist in several guidelines [14,15,16,17]. National Institute for Clinical Excellence (NICE) guidelines recommend parent training/education programs and psychological interventions such as CBT as the first-line treatment, with medication to be used in severe cases or where these treatments have proven ineffective [14]. In childhood, this support is normally provided by Child and Adolescent Mental Health Services (CAMHS)

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