Second General Assembly meeting of the CoCA consortium was a great success – Some personal highlights

Enlightened, energised and slightly sunburned – that’s how I left the General Assembly (GA)-meeting of CoCA. This meeting took place from 19 – 22 March in Barcelona. After the kick-off meeting last year, this was the second time that all researchers came together and shared their findings, expertise and problems concerning the research on comorbid conditions of ADHD (CoCA). The meeting made clear that despite everyone’s different backgrounds, nationalities and expertise, we’re all working towards the same goal: reducing the burden of comorbid conditions in ADHD.

In 2 days I had listened to updates from researchers, talked about the latest findings and struggles in the various research groups, and informed the CoCA group about the progress we had made in the dissemination and valorisation workpackage. My ears were spinning, my throat was dry and my brain was tired, but the meeting had been a great success. Let me summarise my personal highlights from this meeting.

  1. Comorbid conditions in ADHD are prevalent, and costly

The first epidemiological findings of CoCA are currently being written up. Very large databases from Sweden, Germany and Estonia have been studied to investigate the prevalence and costs of comorbid conditions in ADHD. The results will likely make a strong case that comorbid conditions in ADHD are very common, and that better treatment of these conditions is expected to reduce societal costs. You can expect some interesting and important papers to appear this or next year.

What has already been published in the past year is for instance this paper on the genetic overlap between ADHD and bipolar disorder (Van Hulzen et al. 2016).

  1. The first intervention studies with patients have started

Other CoCA researchers have been working hard to get the first intervention studies up and running. In Frankfurt am Main, the first participants have started in the PROUD-trials (see this recent blog post). Using both bright-light therapy and regular physical exercises, we hope that symptoms of depression and obesity in adolescents and adults with ADHD will decrease. This same study will also run in Nijmegen (NL), London (UK) and Barcelona (SP). So no results yet, but exciting things are coming up!

  1. CoCA researchers are actively disseminating and communicating the project

On the dissemination and communication side, which I’m personally involved in, things are moving forward as well. I was very happy to hear from many different researchers how they are informing children, adults, patients, health care professionals and other parties about the work that we are doing. In Spain for instance, researchers go to schools to inform pupils about ADHD and comorbid conditions. And in Germany, health care professionals are informed about the co-occurrence of depression, substance abuse and obesity with ADHD. We are also closely collaborating with the ADHD patient organisation ADHD-Europe, who are a great help in disseminating our messages to ADHD patients and their families.

Additionally, this blog is receiving an increasing number of visitors and followers. Although still somewhat hesitant, the CoCA researchers themselves start to get excited about writing posts for this blog. And after I gave a workshop on ‘how to write a blogpost’ at this meeting, I expect that many more posts will appear in the next months.

  1. Philips is interested in our project and gave us useful advice

Besides the research findings and publications that CoCA will generate, we want the project to have additional societal impact. For instance, that the tools of our intervention study that we are now testing could be further developed by a company. We had therefore invited someone from Philips to join our meeting, listen to what we’re doing and give feedback from an industrial perspective. I learned for instance that when at Philips a new product is developed, they always first ask what problem they are solving, and for whom. Seems pretty obvious, right? But it’s a good thing to keep in mind also when designing studies.

  1. The weather was perfect

Let’s be honest, the weather in Barcelona was another highlight. Although most of the meetings were indoors, lunch and tea breaks allowed us to enjoy the Spanish sun. And if you’re coming from Northern Europe, this is a welcome treat after a long and dark winter. I would vote to have next year’s meeting in a sunny place again!

 

So now the real work starts. With the first results coming out, dissemination activities can really start taking place. We have also come up with the idea to make tip-sheets about CoCA that every member can use for dissemination. This way, our activities will be more coordinated and combined.

Keep following this blog for updates on CoCA (and the other consortia), as well as our new Twitter account @mindgap_psy

This post was written by Jeanette Mostert. Jeanett is Dissemination Manager of the CoCA project.

Transitioning from child to adult: a new declaration demands continuing support for ADHD in Europe

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image ‘growing up’ by sillysirry via Diviantart

ADHD Europe – the European patient organisation for people with ADHD – has launched a declaration on behalf of teenagers with ADHD. The declaration states that adult services in all European countries should offer suitable care for teenagers with ADHD who transition into adulthood, and to adults who are newly diagnosed. Andrea Bilbow is the president of the ADHD Europe organisation. I asked her about the importance of this declaration, and what she thinks that the consequences of the declaration will be.

Why was this declaration to urgently needed?

“Well it’s a bit of a long story that goes back 20 years. We started as organisations to raise awareness for ADHD in children, and to organise good services for these children. In most European countries there now are good services for children with ADHD.”

“However, these children are all becoming adults. For many young people across Europe as soon as they reach 18 years of age, they find that transition to adult services is very poor.  In many cases treatment is withdrawn altogether leaving them vulnerable and at risk.  And for those fortunate enough to receive the medication that they need for ADHD in adulthood, the medication is no longer reimbursed. This puts a huge burden on families who often have two or more children with ADHD and who do not have the resources to pay for the medication. Only in one or two countries in Europe are there official adult licences for the medication needed by adults with ADHD. Besides medication, young adults with ADHD do not have access to the services for ADHD in adult clinics, while they were receiving help in children’s services.”

Why is it so important that adults with ADHD receive suitable care?

“18 is a very vulnerable age. It’s the age when adolescents move up to Higher Education or start with their first jobs. Having ADHD, these young people are vulnerable to substance abuse, academic failure, job loss, becoming homeless or even crime. Furthermore, many of them will be starting to drive. Studies have shown that  a significant number of young people with untreated ADHD will be involved in car accidents.”

“For years the EU has been trying to address the problem of school dropout in Europe, without success. Having medication for ADHD continue to be reimbursable and proper services for young adults with ADHD available would go a long way to reduce the number of young people who abandon education. So it is very, very important that they receive proper treatment and support. It’s probably one of the most important things you can do for this age group.”

People can now sign the declaration to show their support. What do you think will happen next?

“Well first of all, it’s amazing to see how much support we are receiving. The Declaration has been launched for only a week and already we have more than 500 signatures. More importantly, these signatures come from all over the world. But it also shows that what this declaration states is very much needed. Clearly, 18+ people across Europe are really struggling.”

“First, we will let this run for a couple of months to see how many signatures we can receive. We encourage professionals to also show their support: professors, doctors, medics, researchers, teachers, police. Anybody who has any stake in improving the lives of people with mental health problems. Once we have gathered this support, we will encourage the member countries to take it to their MEPs and try to get the required number of MEPs to sign the declaration in order for it to be discussed in the European Parliament. That is our mission. We will try to find out why  in some countries they don’t want psychiatrists to diagnose and treat adults with ADHD. This is a human right that’s being breached.”

This October is ADHD awareness month. The perfect moment for the ADHD Europe patient organisation to bring out this Declaration and to raise awareness for this important issue. You can find, and sign, the Declaration at the website of ADHD Europe: http://www.adhdeurope.eu/adhd-europe/adhd-declaration-2016.html

The Declaration also shows the importance of research on ADHD. The CoCA project for example will investigate the societal costs of ADHD and comorbid disorders. Such data can assist in persuading governments about the importance of providing suitable care for those – children and adults- with ADHD.

This post was written by Jeanette Mostert. Jeanett is Dissemination Manager of the CoCA project.