Vanishing clinical services for ADHD when children become young adults: a UK-based observational cohort study Eklund, H ; findon, J., Hayward, H.,Cadman, T; Howley, D; Beecham, J; Findon, J; Xentidis, K; Murphy, D; Asherson, P; Glaser, K Department of Social Science, Heatlth & Medicine King’s College London

Outline of presentation Background What do we know about: Use of services among young people with ADHD at transition What do we not know and why do we care? Methodology of the study Preliminary results Feedback and questions NIHR funded project looking at service use and needs among those diagnosed with ADHD at transition from adolescence to young adulthood (14-24). Lack of services and support after age of 16-18 Key aim is to look at service use and transition from child to adult services.

Background NIHR funded study: service use & needs among those diagnosed with ADHD at transition from adolescence to young adulthood (14-24) NIHR funded project looking at service use and needs among those diagnosed with ADHD at transition from adolescence to young adulthood (14-21). Lack of services and support after age of 16-18 Key aim is to look at service use and transition from child to adult services.

Research Aim: Childhood and current ADHD symptoms and service use at transition What factors are associated with service use at transition among this clinical group? In particular how is service use at transition related to age when ADHD symptoms and impairments are taken into account?

What do we know? Persistence of ADHD (although declines with age) – 2/3 still warrant diagnosis in adulthood Evidence ADHD associated with poor outcomes in adults (e.g. unemployment, offending behaviors, other psychiatric disorders). Steep fall in drug prescribing among young people with ADHD in UK after age 17.

Discontinuation of drug treatments for ADHD during adolescence 42% not being seen by services for ADHD Age CADDY Study data: McCarthy et al (2009) BJPsychiatry

What do we not know and why is it important? Know little about factors associated with service use at transition. Few detailed follow-up studies based on homogeneous starting point. Well-established guidelines regarding treatment/interventions for ADHD.

Methods (1) Design: 3 year prospective questionnaire/interview based study Face-to face interviews with parents/partners and the adolescents/young adults (at 1 year intervals) Self-completion questionnaires administered to the adolescent/young adults (at 1 year intervals).

Methods (2) Participants: Clinical sub-sample recruited to the IMAGE project Diagnosis of combined type ADHD Now 14-24 years of age European or Caucasian descent IQ= >70 Exclusion criteria: not diagnosed with: autism, epilepsy, general learning difficulties, brain disorders, and any genetic or medical condition with behaviours that may mimic ADHD. This study was based on an existing clinical research sample, that was used in the International Multi-Centre ADHD Genetics (IMAGE) Project (please see below for more details). The IMAGE study was a genetic study of ADHD (sample size=204) carried out by researchers at the Institute of Psychiatry between June 2003 and January 2006. This study formed part of a wider European collaborative genetic study of ADHD (sample size of around 1400) (Kuntsi et al, 2006). Families in the IMAGE study were recruited by referral from child and adolescent clinics in the southeast of England on the basis that they had received a clinical diagnosis of combined type ADHD (as defined in the DSM-IV manual) and had at least one surviving biological sibling. This restriction on the combined subtype was chosen due to the genetic focus of the IMAGE project (Ahserson, 2004). Both participants and their siblings (at the time of recruitment) were included in the IMAGE study if they were between the ages of 5-17, had an IQ of 70 or higher, were of European or Caucasian descent, and had at least one biological parent willing to provide DNA samples.   An investigation of the IMAGE research database showed that 154 out of the 204 young people were between the ages of 14 and 24 by the 1st of March 2009. At the time of the study the families lived in various locations across England and their current service use and needs were unknown. Thus, this sample was followed up in this study in order to investigate service use and needs among this clinical group.

Instruments Barkley’s ADHD rating scale (parent, self-report and childhood parental score) Audit-C (Alcohol measure) self-report & brief series of drug questions adpted from ONS Survey of Psychiatric Morbidity (self-report) Questions on contact with police (self-report) Clinical Interview Schedule Revised CANDID (parent and self-report) CIS-R (face-to-face) The adolescent/young adult version of the questionnaire consists of: (i) background information (e.g. marital status, living arrangements etc); (ii) a needs assessment based on the Camberwell Assessment of Need for Adults with Developmental and Intellectual Disabilities (CANDID) (i.e. a standardised needs-assessment instrument that assesses need in 25 life domains); and (iii) the Client Service Receipt Inventory (CSRI) adapted for this clinical group asking information about the frequency and type of service use in the last three months, contact with transition teams and services, current employment situation, and educational circumstances. (ii) the Clinical Interview Schedule-Revised (CIS-R) (i.e. a rating scale of co-morbid psychological symptoms);

Results Persistence of ADHD (14-24) ADHD and Service use Symptoms Impairments Psychopathology Trouble with the police Drug/alcohol use Service use

7-year follow-up study of children with Combined Type ADHD (n=89) Eklund, Glaser, Asherson et al, unpublished data from IMAGE/TRANSITIONS project

Changes in key characteristics over time Variable Wave 1 Wave 2 Wave 3 YP ADHD symptoms 10.97 9.51 8.64*** YP ADHD impairments 4.52 3.93 3.49* YP CISR (parent report) 8.37 8.09 7.45 YP CANDID (total needs) 5.23 5.16 5.30 PR Carer burden (Zarit) 17..89 15.19 15.92* YP Service use 0.58 0.36 0.46**

GEE Estimates of random effects with clinical services Predictors Unadjusted ORs Confidence Interval Adjusted ORs YP age at start 0.741*** 0.629-0.872 0.749 0.623-0.899 Note: Adjusted model includes parent education, ADHD symptoms and impairments, psychiatric comorbidity and carer burden.

Results: Service Use Age (rather than ADHD symptom severity, level of impairment or comorbidities) is only significant correlate of service use over time. Not only suffer from persistent ADHD, impairments and psychiatric comorbid symptoms but report wide range needs benefit from evidence-based treatment. Most help received toward meeting needs of adolescents and young adults is from families.

Conclusion Age is key factor in determining service use at transition – not need factors. Importance of offering services and treatments for this age group.