The Need for Planned Transition

There has been increased recognition of ADHD as a condition that can affect people across the lifespan, and with this comes recognition of the need for the planned transfer of care between child, adolescent and adult services. However, this increased awareness has not been paralleled in practice by developments in the services for those with symptoms persisting beyond childhood. One overlooked group in this regard has been the young people who are transitioning between child and adult services.

I think to get the child service you were registered with (because you've always known them) and then go and meet the new adult services together and sort of have a 'pass-over' would be very beneficial because then you've got someone who's known you for years... Yeah, a 'meet and greet' session would be really good.

At this crossroad in their care young people are experiencing their ADHD symptoms within the context of increasing demands in their school-life and workload, decisions about further education and career choices (see Module 4), managing extra-curricular activities such as part-time jobs (see Module 5), and trying to maintain social and personal relationships (see Module 6).

With this in mind, the transition period is an important time during which service engagement is important in minimising the impact of ADHD on their lives. However, research has demonstrated that by age 21 young people have almost completely disengaged from health care services [1], with very few receiving treatment at all.

Guidance is available outlining a number of general practice points that should be taken into account across services [2,3] (see Boxes 1 and 2), which may help to reduce the number of those who discontinue their engagement with services altogether and promote a more positive transition between services.

Service Disengagement

I think it's very important to have communication because I think you feel as though you need that attention...I haven't known much about it but my mum's had awful trouble with the transition, with regards to medication and stuff like that. Getting the right prescriptions and people to prescribe them when I've been away from home and stuff.

There may be several explanations for service disengagement. Firstly, young people may seek greater autonomy from parents and take on responsibility for their own healthcare as mental health services are no longer obliged to involve parents/guardians. On the one hand, this will help develop a positive alliance between the practitioner and the young person and in turn foster a frank discussion about the young person's attitudes, beliefs, behaviours and feelings. However, this may also feel overwhelming and/or intimidating. Taking personal responsibility for healthcare may not be a priority for young people against the backdrop of other personal and social changes.

Secondly, the actual experience of ADHD often changes in adolescence. A decline in overt hyperactive symptoms and a decrease in cognitive demands once compulsory education ends may lead to a perception both from parents and the individual that treatment is no longer required (see Module 4). Thirdly young people may develop greater awareness of perceived stigma about the 'label' of ADHD and need for medication.

I went through a period [when I was] about 17 when I decided I wasn't ADHD anymore and just stopped taking everything... At school I was throwing away my tablets...I wanted to be normal, like every other girl in my school.

Fourth, negative service experiences may discourage the young person from continuing to engage. For example there may be complications due to unclear child/adult service boundaries and/or variation in protocols between services [3, 4]. This may lead to service-users feeling excluded and let down, and feel that they are unable to participate in decisions about their own care.

Box 1: NICE Guidelines - recommendations for transition [2]
  • Transfer from CAMHS/paediatrics to adult services if patients continue to have significant symptoms of ADHD or other coexisting conditions that require treatment.
  • Transition should be planned in advance by referring and receiving services.
  • Patients should be reassessed at school-leaving age and, if treatment is necessary, arrangements should be made for a smooth transition to adult services.
  • Timings of transition may vary but should be completed by 18 years.
  • During transition, CAMHS/paediatrics and adult services should consider meeting and full information about adult psychiatric services should be made available to the young person.
  • For young people age 16 or over the Care Programme Arrangements [CPA] should be used as an aid to transfer.
  • After transition a comprehensive assessment should be carried out and patients should also be assessed for any coexisting conditions.
  • Trusts should ensure that specialist ADHD teams for children, young people and adults jointly develop age-appropriate training programmes for diagnosis and management of ADHD.

Service Provision

The provision of care by child services has traditionally ended in adolescence. However, many of these services now provide care beyond the age of 16, and in some cases beyond 18 years of age. While this provides some security for young people obtaining care throughout their teenage years, once they become young adults there is still a lack of clarity regarding how their transition will be facilitated, and indeed where they will move on to.

Services vary widely across the country. For example, a questionnaire survey conducted with community paediatricians in the UK reported that while the vast majority (90%) of clinicians identified the need for access to dedicated adult ADHD services, only around 1 in 5 reported this service was available in their area [5]. Thus aside from purposeful disengagement of the patient, service providers may contribute to the gap in transitional care. For example, there may be a lack of familiarity among child health professionals of the presentation of ADHD in older teenagers and young adulthood.

ADHD is not included in mainstream training for many healthcare professionals, and this may contribute to underrecognition of ADHD symptoms in this age-group and a lack of understanding of the changing presentation of ADHD in young people. In turn this may lead to premature termination of treatment or failure to transition to adult services. For these reasons, psychoeducation for both practitioners and service-users about ADHD, an understanding of the progression of the condition from childhood to adulthood, and the need for young people (and their families if appropriate) to fully participate in their own care are essential prerequisites to a smooth and positive transition.

It is unlikely that a rigid referral pathway will be effective for all young people making the transition from child to adult ADHD services. However the need for this transition to be planned should not be overlooked, given the anxiety that this period can provoke for service-users and the unacceptably high level of disengagement that has been reported. There is guidance and recommendations available (see Box 1 and 2) that aim to promote a more positive transition experience for patients and their families and, importantly, reduce the number of young people with ADHD who disengage from health services.

Box 2: Recommendations for commissioners and clinicians [3]
  • ADHD often continues into adulthood. A significant proportion of young people with ADHD will continue to need support and treatment from health service professionals when they reach adulthood.
  • Transition should be planned in advance by both referring and receiving services.
  • Timings of transition may vary but should ordinarily be completed by 18 years. Transition between teams should be a gradual process, e.g. a minimum period of six months.
  • ADHD services for children and adolescents vary considerably between regions (e.g. CAMHS, paediatrics, availability of shared care). It is essential that commissioners take local resources into account when designing a transition service.
  • Clinicians involved in delivering both specialist and local ADHD care pathways and services for children, young people and adults should include training in evidence based up-to-date recommendations regarding the diagnosis and management of ADHD at age-appropriate points of development as part of their continuing professional development.
  • A planned transfer to an appropriate adult service should be made if the young person continues to have significant symptoms of ADHD or other co-existing conditions that require treatment.
  • Appropriate adult services should include primary care, adult community mental health teams and access to specialist adult ADHD services.
  • Clear transition protocols should be developed jointly by commissioners, CAMHS/paediatric services, AMHS and primary care to facilitate transition and ensure standards of care are maintained during the transition period.
  • These transition protocols should be available to all clinical teams and should include psychosocial material that provides high quality, comprehensive, impartial and appropriately written information for both young people and their parents/carers.
  • Information should also be developed in a media format that is readily accessed by young people, e.g. use of phone applications and internet sites.
  • Pre-transition: young people with ADHD should be reassessed at school leaving age by the service managing their care. They should be informed of the outcome of this assessment and transitioned according to need, e.g. to GP services, adult community mental health teams (community, learning disability or forensic as appropriate), specialist adult ADHD teams, or adult physical health teams where required. Both the patient and all adult/GP teams receiving referrals should be jointly informed of the patient’s initial transition.
  • During transition: child and adult services should ideally have a joint transition appointment. Full information about adult psychiatric and GP services should be made available to the young person and their family. Full information about the young person's paediatric/CAMHS care should be available to the adult teams, including a detailed clinical transition report.
  • CAMHS practitioners and paediatricians should foster engagement with AMHS through open discussion and psychoeducation about ADHD, the benefit of evidenced based psychological and pharmacological treatment where appropriate, and the risks of disengagement. It is important to address concerns about stigma associated with referral to AMHS.
  • Joint meetings between child and adult services must ensure the needs of the young person will be appropriately met. This may involve further discussion and collaboration with educational and/or occupational agencies.
  • For young people age 16 or over in CAMHS care in the UK, Care Programme Arrangements (CPA) should be used as an aid to transfer. CPAs are not available in paediatric practice and so a planned assessment of need with the young person and their parent and a clearly documented plan of action is recommended.
  • Parents and carers need to be prepared and facilitated to aid their children’s gradually increasing independence and autonomy with their ADHD and it's treatment. Referring child and receiving adult/GP teams should be mindful of possible parental ADHD and support and manage this appropriately.
  • Post transition: a comprehensive assessment should be carried out by the receiving service. Patients should be re-assessed for any coexisting conditions and referred for assessment/treatment/support of associated difficulties, including co-morbid mental health/learning/educational/employment support.
  • Shared care arrangements between primary and secondary care services for the prescription and monitoring of ADHD medications should be continued into adulthood.
  • Direct psychological treatment should be considered (individual and/or group CBT) to support young people during key transitional stages. This should have a skills development focus and target a range of areas including social skills, interpersonal relationship problems (with peers and family), problem solving, self-control, listening skills and dealing with and expressing feelings. Active learning strategies should be used (e.g. see [54, 55]).
  • Direct psychological treatment should be considered (individual and/or group CBT) to support young people experiencing symptom remission and/or stopping medication.

Key points from Module 8

Box 3: Key points from Module 8 – Recommendations for Planned Transition
  • By age 21 young people with ADHD have almost completely disengaged from services with very few receiving ongoing treatment.
  • Disengagement may reflect young people seeking greater autonomy from parents as they mature and the expectation that they will gradually take responsibility for their healthcare.
  • The presentation of ADHD changes as young people mature, with decline in hyperactive and impulsive symptoms.
  • There may be a lack of familiarity among child and adult health professionals of the changing presentation of ADHD as children mature.
  • Published evidence and recommendations are available to assist a positive and effective transition.
  • Transition should be planned in advance with involvement of all parties (e.g. service-users and if appropriate their family, child and adolescent health care professionals, GP practitioners) and using Care Programme Arrangements [CPA].

References

[1] McCarthy, S., Asherson, P., Coghill, D., Hollis, C., Murray, M., Potts, L., et al. (2009). Attention-deficit hyperactivity disorder: treatment discontinuation in adolescents and young adults. The British Journal of Psychiatry, 194(3), 273-277.

[2] National Institute for Clinical Excellence. (2009). Attention deficit hyperactivity disorder: Diagnosis and management of ADHD in children, young people and adults. NICE clinical guideline 72. London.

[3] Young, S., Murphy, C.M., & Coghill, D. (2011). Avoiding the ‘twilight zone’: Guidance and recommendations on ADHD and the transition between child and adult services. BMC Psychiatry. 11:174, dx.doi.org/10.1186/1471-244X-11-174

[4] Singh, S.P. (2009). Transition of care from child to adult mental health services: the great divide. Current Opinion in Psychiatry, 22(4), 386–390.

[5] Marcer, H., Finlay, F., & Baverstock, A. (2008). ADHD and transition to adult services: the experience of community paediatricians. Child: Care Health Development, 34(5), 564–566.

Further Reading and Useful resources

Young, S., Murphy, C.M., & Coghill, D. (2011). Avoiding the ‘twilight zone’: Guidance and recommendations on ADHD and the transition between child and adult services. BMC Psychiatry. 11:174, dx.doi.org/10.1186/1471-244X-11-174

Young, S., & Bramham, J. (2012). Cognitive Behavioural Therapy for ADHD Adolescents and Adults: A Psychological Guide to Practice, Second Edition. Chichester: John Wiley & Sons.

AADDUK, Transitions from Adolescence to Adulthood: aadduk.org/2012/03/06/adhd-transition-from-adolescence-to-adulthood