Interdisciplinary Expert Discussion
Attention deficit hyperactivity disorder, or ADHD for short, is often associated with children. Only a few think of affected adults! The symptoms persist, at least in part, in 50-80% of those affected as children into adulthood, often with far-reaching consequences. Their care urgently needs to be improved – leading experts agreed on this during an expert discussion. Approaches for improving care were also discussed during the meeting. The discussion was supported by Takeda, a company active in the field of ADHD.
The impact of those affected with adult ADHD is high: “Patients remain behind their cognitive possibilities”, as one of the participants outlined the situation from a psychiatric point of view. “The symptomatology has an impact on almost all areas of life”. In part, the disorder is associated with a considerable stigma for those affected. At the same time, the positive characteristics of many ADHD patients, such as their special sensitivity and creativity, are hardly talked about. Instead, a social stigma dominates. The participants of the expert discussion – 16 experts from psychiatry, psychology and patient representatives, some of whom are affected themselves, as well as the patient organization ADHS Deutschland e.V. – followed the call for a discourse on a position paper published in 2019, written by ADHS Deutschland together with medical experts from the university hospitals in Bonn, Frankfurt, Munich and Bochum.
An active participant in the discussion was also Dr. Kirsten Kappert-Gonther, Member of the Bundestag, spokesperson for health promotion for the Bündnis90/Die Grünen parliamentary group and herself a psychiatrist.
The aim of the discussion was to define core problems and gaps in care and to derive concrete solutions. It quickly became clear that gaps in care are evident – numerous studies and practical experience clearly indicate this. The first question was therefore which forms of underuse or misuse of care are particularly burdensome for patients. In a survey among the participants in the discussion, three main problem areas were identified:
· Long way to the correct diagnosis
In Germany, there are not enough specialists and psychotherapists with special knowledge of ADHD in adults. Patients therefore often have to wait a very long time for an appointment for diagnosis. According to the experts, the fact that this specialized diagnosis is not offered in line with demand can also be attributed to the insufficient remuneration of the time required for this diagnosis by psychiatrists in private practice. In addition, ADHD patients often suffer from other, so-called comorbid mental illnesses, such as depression, addiction or anxiety disorders. If these comorbid illnesses have already been diagnosed in patients, the “diagnostic overshadowing effect” can lead to ADHD no longer being recognized, but rather being “overshadowed” by other mental illnesses and being overlooked.
This not only has immense consequences for those affected, but also for the healthcare system the missing or delayed diagnosis goes along with immense costs. For example, the failure to alleviate suffering often leads to doctor hopping, the initiation of unnecessary treatments and avoidable hospital stays.
· Too few competent therapists
But even if the person has been diagnosed with ADHD, the suffering is often by no means over. He or she is then faced with the challenge of finding a competent treatment provider. The lack of ADHD specialists is on the one hand due to the fact that ADHD and especially ADHD in adulthood has not yet really arrived in education and training and therefore awareness is missing. On the other hand, people with ADHD are also stigmatized by professionals. Many people associate ADHD patients with “strenuous” persons – an assessment that is naturally not shared by the participants in the expert discussion. Moreover, ADHD can be treated comparatively effectively today and offers rapid and noticeable relief for those affected. “It is so important that there are people who know what makes us tick,” was one comment made in a focus group discussion with affected persons that preceded the expert talk.
· Lack of understanding for those affected
The cause of many care problems also lies in a lack of knowledge about the special characteristics of those affected, both in professional circles and in society. As a result, affected individuals often feel misunderstood, rejected, and develop the perception that something is “wrong” with them or that they have a different disorder. It is therefore important to raise awareness of ADHD in adulthood in society as a whole. Because still today many are of the opinion that ADHD only affects children and “grows out of control” over the years. In addition, there are the voices of ADHD deniers, who deny the existence of the disease.
The participants of the expert discussion agreed that a lack of awareness further increases the disadvantage of those affected.
Medium- and long-term solutions
In order to be able to close these gaps, the participants in the discussion proposed various solutions to help improve the situation in the medium or long term.
· Promotion of training
The experts see well-trained specialists who can diagnose and treat as the most important lever for improving the care situation. Many patients with undiagnosed ADHD have already received years of treatment for other disorders. ADHD is all too often overlooked. Education can counteract this. In the future, the topic of adult ADHD should be given greater consideration in training courses for specialists, general practitioners and psychotherapists. However, it should also be given an appropriate place in university training and later in further training.
The care of adults with ADHD is interdisciplinary and interprofessional. Therefore, a stronger networking of adult, child and adolescent psychiatry, psychotherapists, pediatricians, family doctors and other actors involved in the care is essential.
Another important complex of measures concerns proper education about the disease in society in general, in professional circles and ultimately also in politics. It also makes sense to involve schools – including vocational schools – even more. Targeted training courses on the subject could help here. Existing programs should be expanded accordingly. This can also help to reduce prejudices against those affected.
In addition, it may be necessary to remunerate physicians appropriately for their detailed account of the patient’s medical history and diagnostics. This is because it is time-consuming and, from the physicians’ point of view, is currently not remunerated accordingly.
Finally, the advancing digitalization in the healthcare sector – not least due to the Corona pandemic – should be used as an opportunity. Low-threshold information platforms, self-help groups, coaching sessions and therapy sessions could be offered online.
Thesis paper and implementation perspective
Based on the discussion during the expert meeting, a thesis paper will be prepared in which the above-mentioned gaps in care and problem areas will be structured and concrete approaches to solutions will be presented to politicians and decision-makers. As a result, concrete measures could be named in a National ADHD Action Plan and the implementation could be approached in a concerted manner.
All in all, the participants agreed that something has to be done and that this is only possible if experts and patients tackle the issue together with politicians, practicing physicians, psychotherapists and health insurance companies.
The expert discussion was supported by Takeda Pharma Vertrieb GmbH & Co. KG. No influence was exerted on the content of the discussion.
Participants of the expert discussion: Roberto D’Amelio (University hospital Saarland), Prof. Dr. Dr. Tobias Banaschewski (Central Institute of Mental Health, Mannheim), Dr. Myriam Bea (ADHS Deutschland e.V.), Prof. Dr. Hanna Christiansen (University of Marburg), Dr. Kirsten Kappert-Gonther (Member of Parliament, Bündnis 90/Die Grünen), Prof. Dr. Christian Mette (EVH-Bochum RWL/University of Duisburg-Essen), Dr. Roy Murphy (Schön Klinik), Dr. Astrid Neuy-Lobkowicz (specialist for psychosomatics and psychotherapy in Munich and Aschaffenburg), Dr. Klaus-Ulrich Oehler (psychiatrist and neurologist in Würzburg), Prof. Dr. Alexandra Philipsen (University hospital Bonn), André Pluskwa (patient), Prof. Dr. Oliver Pogarell (University hospital Munich), Prof. Dr. Andreas Reif (University hospital Frankfurt), Prof. Dr. Sören Schmidt (University Fresenius) and PD Dr. Daniel Schöttle (University hospital UKE).