Dr Jessica Agnew-Blais


Late-onset ADHD

The first session of Day 2, chaired by Professor Philip Asherson (King’s College London and Maudsley Hospital, London, UK), began with a look at the onset and course of late-onset ADHD, presented by Professor Jim Swanson (Child Development Center, University of California, Irvine, CA, USA). The presentation looked at two theoretical frameworks put forth in a recent review by Caye and colleagues to help understand the trajectory of ADHD: the complex phenotype model and the restricted phenotype model.1 Based on these models, the review concluded that the concept of late-onset ADHD, i.e. ADHD diagnosed after the cut-off of 12 years of age, is a valid trajectory for ADHD symptoms. However, the number of cases with this late (after-adolescence) onset is still uncertain. Looking at an exploration of the Multimodal Treatment of ADHD study, Professor Swanson highlighted that in the patient group analysed, almost 48% had symptoms over time that could be considered late-onset, but that after taking into account other factors (e.g. clinically significant impairment, cross-situational symptoms, symptoms due to other disorders, etc), it was reported that 2.1% of patients had true late-onset ADHD.1 In an example assessment, Professor Swanson concluded that out of 100 patients, if the true prevalence of child-onset ADHD is 5%, then 3 patients would be diagnosed with ADHD; and if the true prevalence of adult-onset ADHD is 2%, then a further 2 would be diagnosed with ADHD. Professor Swanson noted that, in his opinion, it is important to take into account the potential number of false positives, which may be as high as the number of true cases of ADHD.

In the following presentation, Dr Jessica Agnew-Blais (Department of Social Genetic & Developmental Psychiatry, King’s College London, London, UK) took a further look at late-onset ADHD by examining evidence from the Environmental Risk (E-RISK) Longitudinal Twin Study, a longitudinal, population-based cohort study.2 This was used as a basis to examine why these patients may appear to have late-onset ADHD. Dr Agnew-Blais noted some factors that, in her opinon, may explain some (but not all) cases of late-onset ADHD, including issues such as a change in who reports the symptoms (parents for children vs self for adults), subthreshold ADHD in childhood, masking of childhood symptoms by either self-compensation or by parental assistance, or symptoms thought to be due to other disorders. Dr Agnew-Blais also suggested that, in her opinion, the idea of simply missing the diagnosis in childhood was of low probability. Dr Agnew-Blais concluded by outlining some areas for further investigation to help define late-onset ADHD, including establishing risk factors, ensuring that follow-up studies continue to later ages, examining how these patients are treated, and comparing functional imaging in these patients  versus those with early-onset ADHD.

The symposium concluded with a discussion of two potential concepts for late-onset development of ADHD. Professor Anita Thapar (Division of Psychological Medicine and Clinical Neurosciences, Cardiff University, Cardiff, UK) raised her opinions surrounding how misclassification may potentially occur, where childhood symptoms of ADHD are missed during assessment as a child, and suggested that if these could be removed it would leave us with a subset of patients with genuine late-onset ADHD. She also discussed the potential for a non-typical (for children with ADHD) neurodevelopmental profile in those with late-onset disease, i.e. having a delayed manifestation of symptoms resulting in apparently late-onset ADHD.3 She finalised her presentation by noting that as data in this area are currently limited, there is a need to better characterise these individuals for optimal consideration and treatment.

Dr Agnew-Blais: “The late-onset group showed similar rates of factors (psychosocial and socioeconomic outcomes, and mental health disorders) to those with persistent ADHD.”

Andrea Bilbow, OBE

Plenary session

ADHD Europe – Patients as partners: a voice for change

The first plenary session of EUNETHYDIS began with Andrea Bilbow, OBE (President, ADHD Europe) introducing the National Attention Deficit Disorder Information and Support Service (ADDISS; http://www.addiss.co.uk/), a National UK patient organisation founded by Ms Bilbow, which has been supporting families of children with ADHD. Ms Bilbow highlighted that ADDISS focuses on parents and provides twelve 7-week psychoeducation courses and three drop-in sessions per month for parents, as well as one-to-one sessions and workshops on understanding ADHD. ADDISS also offers 90 minutes of free training to schools and has a dedicated helpline. Four months after its introduction, ADDISS is already in direct contact with >90 families, and receives referrals from Child and Adolescent Mental Health Services, schools and social services, as well as self-referrals. Ms Bilbow stated that parents are normally offered generic parenting courses and that parenting practitioners often have little knowledge about ADHD; therefore, ADDISS wants to deliver the “gold standard for ADHD”, and Ms Bilbow hopes that in the future, ADDISS will also include social skills groups for children with ADHD, and psychoeducation for children and adolescents. Ms Bilbow then played a video recorded by parents who had used ADDISS, and the feedback was very positive. Parents stated that ADDISS was an “invaluable course”, and that by joining this parent organisation they felt empowered by psychoeducation and felt that they understood their children better.

The final talk of this session was led by Michelle Beckett (Founder, ADHD Action [www.adhdaction.org]), who was diagnosed with ADHD at the age of 44. Ms Beckett began by describing her diagnosis history, and explained that her ADHD had gone undiagnosed for years. Ms Beckett spoke at a Labour conference in 2017 about ADHD, and has now formed an all-parliamentary group, which is fighting for change against the stigma of ADHD. Ms Beckett speaks to the media and press about ADHD, and indicated that although we have a long way to go, we are seeing a turnaround in the press regarding ADHD. Ms Beckett provided strategy ideas for how the rhetoric of ADHD could be changed in the future, and indicated that using patient stories and focusing on the financial costs associated with ADHD may help change this in the future.

This plenary session closed with a 10-minute video presented by Ms Bilbow, which will be launched by ADHD Europe (www.adhdeurope.eu) in October 2018. The video included excerpts from clinicians about ADHD and excerpts from patients about what their diagnosis means to them.

Ms Bilbow: “It’s all about attitude and education.”

Ms Ellis Logan: “[A patient] can’t make a decision about medication if they don’t have the correct information.”

Ms Beckett: “I wouldn’t switch my ADHD off … I celebrate my ADHD.”

Professor Tobias Banaschewski

Parallel session

National and International guidelines for the management of ADHD

This session began with a presentation by Professor Emily Simonoff (Department of Child & Adolescent Psychiatry, King’s College London, London, UK) on the recent 2018 update to the National Institute of Health and Care Excellence (NICE) guidelines for the diagnosis and management of ADHD.4 Professor Simonoff began by taking the delegates through the general process that NICE uses for development of guidelines, irrespective of therapy area, before focusing on the specifics of the updated ADHD guidelines.

Key changes across the updated document4 include: a focus on the broader management of ADHD, a new emphasis on recognition of the disorder in patient groups that may not get as much attention, inclusion of GRADE criteria, and removal of classification of severity of disease. The presentation went through the key recommendations and the level of evidence supporting the recommendations in children aged under 5 years, children and adolescents aged 5–18 years, and adults with ADHD, comparing these with the previous recommendations from 2008. [Please note: no pharmacological treatment is approved/indicated for children aged <5 years]

A question from the audience prompted a discussion about the absence of any details regarding education recommendations in the new guidelines. Professor Simonoff explained that NICE is unable to make any guidance on the education sector, as this is beyond its remit and lies within in the domain of the Department of Education – it was emphasised that this applies across NICE, and is not just limited to ADHD.

The second presentation of the session was given by Professor Tobias Banaschewski (Central Institute of Mental Health, Mannheim, Germany), who discussed the recently released updated German guidelines, entitled “The interdisciplinary evidence- and consensus-based (S3) guideline on attention deficit/hyperactivity disorder (ADHD) in childhood, adolescence and adults”.5 Professor Banaschewski noted that, unlike other countries where guidelines are often developed by government-backed departments, in Germany these are developed by the independent Association of the Scientific Medical Societies, which typically develops guidelines based on the systematic search and evaluation of evidence gathered from existing guidelines (that meet specific criteria) and other sources (such as the Cochrane Library, other published literature and expert consensus). The existing guidelines used in this most recent update were the NICE (2009, 2013 and 2016) documents, the Scottish Intercollegiate Guidelines Network 2009 guidance and the American Academy of Pediatrics 2011 guidelines.5

As with the previous presentation, Professor Banaschewski took delegates through key recommendations in the management of all patients with ADHD, as per the updated German guidelines.

Professor Banaschewski highlighted that, in certain areas, the updated German guidelines differed significantly from NICE guidance. For example, the NICE guidelines do not include severity classifications, whereas the German guidelines define mild, moderate and severe ADHD based on the Diagnostic and Statistical Manual of Mental Disorders – 5th Edition (DSM-5TM). Additionally, the German guidelines provide further detail for the management of patients with ADHD and psychiatric comorbidities.5

The final presentation in this session on treatment guidelines was a brief overview of the upcoming European Consensus Statement on Diagnosis and Treatment of Adult ADHD, presented by Professor Sandra Kooij (PsyQ, psycho-medical programs; Program & Expertise Center Adult ADHD, The Hague, The Netherlands), which will build on the first European Network Consensus Statement published in 2010.6 Professor Kooij made it clear that the Consensus Statement was not developed as a robust guideline, but is an assessment of available data by an International group of experts (as part of the European Network Adult ADHD), who came to a consensus on how adult ADHD should be diagnosed and managed. Following an overview of the recommendations in the upcoming document, Professor Kooij concluded by directly comparing it with the recent NICE guidelines, suggesting that it was similar across multiple aspects, including the requirement for diagnosis to be made by a specialist, the lack of severity classifications, and the inclusion of multiple specific pharmacological and non-pharmacological treatment recommendations.

Professor Banaschewski: “The strength of recommendation is determined by the balance between desirable and undesirable consequences of alternative management strategies, quality of evidence, variability in values and preferences, and resource use.”

Professor Jeffrey Newcorn

Parallel session

Brain mechanisms of the treatment response

This breakout session was initiated by Professor Jeffrey Newcorn (Mount Sinai Medical Center, New York City, NY, USA), who began his talk explaining the neurobiological basis of ADHD and how integration of the executive and reward circuits contributes to the psychological and behavioural processes associated with ADHD.7 Professor Newcorn then went on to describe how motivation and inattention symptoms are associated in ADHD,8 and reminded the audience that the aim of treating patients with ADHD is to minimise the impairment associated with core symptoms. The benefits of stimulant treatment were highlighted, and the results of a Shire-funded study investigating osmotic release oral system methylphenidate (OROS-MPH) versus lisdexamfetamine dimesylate (LDX) were presented, in which LDX was found to be superior to OROS-MPH in adolescents with ADHD in the forced-dose but not the flexible-dose study; this study demonstrated that both OROS-MPH and LDX were efficacious in treating adolescent ADHD.9

Professor Katya Rubia (Institute of Psychiatry, Psychology & Neuroscience, King’s College London, London, UK) then went on to describe stimulant drug effects in ADHD based on positron-emission tomography studies, and presented evidence that administration of stimulants is associated with an increase in striatal dopamine transporters,10,11 which suggests that this could be an adaptive response of the brain to stimulants. Professor Rubia then stated that there is limited evidence for long-term efficacy of stimulants,12 and presented evidence for changes in resting-state connectivity following single-dose MPH use.13

This session was concluded by Professor Newcorn, who began his talk by explaining the rationale for treating some ADHD cases with non-stimulants and presented evidence for the differential effects of MPH and atomoxetine (ATX) on extracellular dopamine levels within the striatum,14 and highlighted that response to MPH or ATX in adolescents with ADHD could be associated with unique activation profiles in the brain.15 Professor Newcorn then described the neural mechanisms which potentially underlie the therapeutic actions of guanfacine extended-release in adolescents with ADHD.16 By presenting how the different mechanisms of action of non-stimulants may lead to different therapeutic responses, Professor Newcorn emphasised that this highlighted the need for personalised treatment approaches. He concluded that although ADHD medications have common and unique effects, the neurobiological basis of ADHD may characterise the overall treatment response; therefore, if we had biomarker predictors of response, could this aid treatment selection?

Professor Newcorn: “Most people do great on whatever stimulant you give them … but some do decidedly better depending on what group of stimulants you get them.”

Professor Rubia: “… protective effect of stimulants on the basal ganglia … [could it be] that stimulants normalise the basal ganglia?”

Professor Newcorn: “There is potential bias in the literature, as the dopamine system is well studied compared with the noradrenaline system.”

Dr David Bull

Industry-sponsored symposium

Bridging the gap: from adolescence to adulthood in ADHD clinical practice

(This symposium was initiated, organised and funded by Shire)

The first industry-sponsored symposium of the meeting was chaired by an independent moderator and medical doctor, Dr David Bull (London, UK), who introduced what was a lively, interactive and very personal symposium on the transition period from adolescence to adulthood in patients with ADHD. The scene was set by Professor Sam Chang (Department of Psychiatry, University of Calgary, Alberta, Canada), followed by the personal story of a patient, Poppy Ellis Logan, and the symposium concluded with a panel and audience discussion involving the entire faculty: Professor Chang, Professor Marina Danckaerts (Department of Child and Adolescent Psychiatry, Leuven University, Leuven, Belgium), Dr Marc-Antoine Crocq (Department of Psychiatry, Rouffach Hospital, Alsace, France) and Dr James Kustow (Barnet Hospital, London, UK).

This opening presentation, entitled “Setting the scene: the importance of the ‘transition years’ for patients with ADHD”, gave a general overview of the course of ADHD from childhood to adulthood. Professor Chang provided a brief glimpse into various aspects impacted on by ADHD across the age range, with the potential for patients to get lost in the system.17 He emphasised the fact that the overall impact of ADHD can be significant and can take many forms. He concluded by stating “keep calm and get it right” – it is not important to act immediately, it is important that we take the right course of action for effective, long-term treatment.

The following segment of the symposium was the first hand story of a patient and her unique journey with ADHD from diagnosis, through her teenage years to adulthood. Concluding her interview, she stated that, in her opinion, clinicians should make sure that patients understand the potential for ADHD to continue into adulthood and that the patients understand all of the aspects of ADHD, not just those related to hyperactivity and inattention (e.g. the potential for addiction and impulsiveness). Clinicians should also be aware of the extra vulnerability that teenagers with ADHD have.

Concluding the symposium, the International panel discussed this transition period and how it could be approached to ensure it is as effective and easy as possible for patients.

The panel discussed what a “good” transition should look like. In their opinion, the most important factor was that plans and discussions for the transition should start early – when the patient is aged 16/17 years, rather than waiting until they are 18 to begin. Patients should be provided with insights into what will happen during the transition and guidance on aspects they will need to begin to take care of as they gain independence and need to rely on themselves more than on other people. It was suggested that one person should be in charge of treatment throughout the transition period to ensure continuity of care and of communication. Where possible, patients should be given resources (physical and digital) of relevant information to help replace that support structure they may be losing if they are leaving home. Where there isn’t a familial support network, clinicians can help the patient build a personal support network. Where there is familial support networks but also a need to leave home for University, it was suggested that patients shouldn’t move too far from home, so the support system is still there when it is needed.

Dr Bull closed the symposium by asking each of the panel members to give one realistic item that doctors could implement in their practice. Professor Chang said that they should let the patient and their parents know what is coming so they can prepare. Professor Danckaerts said that patients should be advised to try at least one joint consultation to see if it would help them. Dr Crocq emphasised psychoeducation and better training on the part of the physician. Finally, Dr Kustow said that discussions about ADHD should always start with a positive question – e.g. ‘What are you good at?’, to break patients of the rut of recounting symptoms and describing their disorder.

Dr Bull: “It’s not about watching what happens but about making things happen.”

Professor Daniel Brandeis


Brain training and neurofeedback

The third symposium was chaired by Professor Banaschewski, who introduced Professor Rubia as the first speaker. The topic of discussion was neurotherapies for ADHD, and Professor Rubia began her presentation by explaining the functional brain deficits in ADHD and highlighting that the right inferior frontal cortex (rIFC) is upregulated following stimulant treatment.18 She then went on to explain that although stimulants are effective in reducing symptoms in many patients with ADHD, she feels that brain-based therapies may be beneficial in targeting the key brain dysfunctions in ADHD. Professor Rubia presented data on the use of real-time functional magnetic resonance imaging (fMRI)-neurofeedback (NF) in adolescents with ADHD, which showed that by targeting the rIFC, ADHD symptoms were reduced.19 Professor Rubia highlighted that using fMRI-NF to target a brain region which is dysregulated in ADHD may be a promising neurotherapy for the future, and questioned whether upregulation of one part of the frontal network could be sufficient to enhance the entire network. When concluding, Professor Rubia stated that more research needs to be done, and emphasised that it is unclear how long these positive effects of fMRI-NF last and that some adolescents may benefit from this therapy more than others.

Professor Daniel Brandeis (Department of Child and Adolescent Psychiatry, University of Zurich, Zurich, Switzerland) opened his talk by discussing his opinions on the benefits and issues associated with NF and presenting results from a study which examined the effects of NF versus MPH activity in teacher-rated improvement of ADHD symptoms.20 He highlighted that in this study, although improvement of symptoms was initially less in children who received NF compared with MPH, at 6-month follow-up, improvement was similar to MPH treatment.20 Professor Brandeis was positive about the effects of electroencephalogram (EEG)-NF but stressed that, in his opinion, NF protocols for learning need to be improved, and that in the future, this treatment could be used in a personalised manner.

The third speaker was Professor Andreas Fallgatter (University of Tübingen, Tübingen, Germany), who introduced the treatment of near-infrared spectroscopy (NIRS)-NF in children with ADHD. He showed that, following 12 sessions of NIRS-NF, patients had a significant improvement in parent and teacher ratings, and these effects were comparable with the use of EEG/electromyographic (EMG)-NF.21 Professor Fallgatter presented some interesting unpublished data regarding the effects of NIRS- and EEG/EMG-NF in children with ADHD and indicated that, in his opinion, NIRS-NF is technically feasible and much easier to use than fMRI-NF, but that further research is needed in the field.

The symposium closed with questions from the audience regarding whether there was evidence for NF improving other symptoms of ADHD such as IQ and executive function. The panel indicated that, in their opinion, the brain effects of NF are better than the behavioural effects at present, and emphasised that we need to focus on reducing the core symptoms of ADHD via NF first but improvements on other symptoms should also be examined. One clinician in the audience pointed out that treatment effects are short-lived in the patients with ADHD whom he has referred for NF. This was concurred by the panel, who stated that long-term studies into NF are warranted and re-emphasised the need for future research.

Professor Rubia: “What is promising is the neuroplastic potential of neurotherapies, which is superior to drugs.”

Professor Brandeis: “It may be that NF does not work immediately but it does catch up [to similar effects of MPH].”

Professor Fallgatter: “NIRS-NF is highly accepted in children and psychiatric patients, for example in ADHD and autism.”

Dr Paramala Santosh

Clinical workshop

School-age children

Dr Paramala Santosh (Department of Child and Adolescent Psychiatry, King’s College London, London, UK) started this session with a brief overview of neurotransmitters and neuroanatomy associated with ADHD, as well as the basic pharmacotherapy of the different ADHD medications. Dr Santosh presented the typical first-, second- and third-line therapies used for ADHD, but stated that these can vary depending on country and on what a clinician is trying to achieve. The purpose of this workshop was for Dr Santosh to deliver practical advice for clinicians on how to treat their patients with ADHD pharmacologically.22 He pointed out that many of these treatments have side effects, but that choosing a treatment often comes down to what side effects a patient is able to cope with, rather than its efficacy. Dr Santosh described the difference between poly-pharmacy (using two different drugs to treat the same condition) and co-pharmacy (using two different drugs to treat two different conditions). Dr Santosh also gave his opinion on how to treat children with ADHD who have comorbid anxiety, sleep disorders, bipolar disorder and cardiovascular conditions. He emphasised that it was important for clinicians to continuously monitor their patients and to deliver personalised care. Dr Santosh stated that the patients and their parents should be in concordance with their clinician, otherwise the desired treatment outcome may not be achieved.

Following Dr Santosh’s interesting and knowledgeable presentation, he was asked many questions by the audience, including clinicians asking him specific questions about how to treat patients with sleep disorders, anxiety and obsessive-compulsive disorder, and patients who have become intolerant to stimulants or use cannabis. Dr Santosh indicated that, in his opinion, the dose of ADHD medication should be reduced to the point where symptoms become manageable, and advocated the use of ‘drug holidays’ in children with ADHD.

Dr Santosh: “The problem is that although the NICE guidelines are very nice, these kinds of patients are not sitting in your clinic … they have comorbid conditions and not just ADHD.”

Professor Phillip Asherson

Clinical workshop

Adult ADHD

This session, which looked at aspects of the classification of adult ADHD, was conducted as a highly interactive session by Professor Asherson and Dr Kustow, encouraging delegates to brainstorm and discuss two key topics relating to adult ADHD.

Professor Asherson briefly introduced the DSM-5TM for the diagnosis of adult ADHD, and after suggesting that there is more to ADHD than DSM-5TM criteria, he asked the audience to brainstorm, as a group, items that are not included in the DSM-5TM but are regularly seen in ADHD. This led to an enthusiastic discussion across the room, with some saying we should be trying to pare down the DSM-5TM list instead of adding to it, while others discussed each other’s ideas as they were raised, to round them out to a more considered idea. Following the group discussion, Professor Asherson presented his own ideas for addition to the DSM, which included dimensional trait, emotional dysregulation, mind wandering, boredom, executive function deficits and sleep problems, each of which had previously been raised by the attending delegates.

The workshop then moved on to the discussion of a hypothetical situation in small breakout groups on the following topic: “After the current criteria for the diagnosis of adult ADHD were deemed not fit for purpose, as they were originally designed for children and were only designed to differentiate from other disorders, there is a need for a better system for diagnosis to be developed”. Following 10 minutes of discussion within small groups, several reported back to the workshop with solutions ranging from a complete overhaul of the system for diagnosis, to looking at it from a dimensional perspective of attention, emotional and cognitive dysregulation, to the simple addition of five further key symptoms to the DSM-5TM criteria.

Dr Kustow concluded the workshop with a brief overview of the various methods of conceptualisation of ADHD. Is ADHD a behavioural problem? A social construct? A genetic disorder? The result of an environmental insult? A neurobiological disorder? An executive function disorder? Or is it a personality disorder? He finished by leaving it up to the audience to depart and consider themselves.

Professor Asherson: “A lot of the DSM was borne out of clinical experience … There is a lot more to ADHD than just the DSM.”

Dr Kai Syng Tan

Plenary session

The Art of ADHD – Unreasonable adjustments

Day 2 concluded with a unique presentation by Dr Kai Syng Tan (Department of Social Genetic & Developmental Psychiatry, King’s College London, London, UK), which looked at the use of art in ADHD, including artists with ADHD, ADHD as the creative impulse, and the importance of art for women with ADHD. Dr Tan discussed the Magic Carpet project that she is working on in conjunction with Professor Asherson, which is a place where people can sit together and chat about ADHD. The project is designed to look at boundaries between the ‘normal’ and the ‘abnormal’.

Dr Tan introduced a video by a performance group called “Art with Heart” that is currently touring a performance called ‘Declaration’, which tells the story of Sarah, the lead actor, after being diagnosed with ADHD in her 30s. After her diagnosis, and as she came to terms with it, she was motivated to create the show because it was so rare to see these stories of women with ADHD and hear what they had to say, and because she wanted her story to be heard to help start conversations and support others.

The final segment of the presentation was partially performed as a piece of poetry looking at those ‘unreasonable adjustments’ that Sarah, as a person with ADHD, felt she has had to make.

  1. All of the forms and boxes that were created by ‘normal’ people that must be filled in but hold no interest to her and her life.
  2. Toning down. Her apparent over-enthusiasm for life and desire to communicate this with others, and at the same time mind wandering causing loss of focus.
  3. Be consistent. Be one thing. Be fixed. The need for ‘normal’ people to give a term to the disorder and aspects of the disorder.
  4. Running out of time. So much to do but so little time.

Dr Tan: “We can use art to make visible these hidden differences.”

Disclaimer: The views expressed here are the views of the presenting physician and not those of Shire

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