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New Expert White Paper Recommends Framework For Action To Tackle Impact Of ADHD On Individuals, Families And Society

April 23, 2013

A new Expert White Paper, ADHD: Making the Invisible Visible, was today presented to policymakers and key stakeholders by a multidisciplinary group of experts.

This Expert White Paper project was initiated, facilitated and funded by Shire AG and supported by the European Brain Council (EBC) and GAMIAN-Europe (Global Alliance of Mental Illness Advocacy Networks). Medical writing support was provided by APCO Worldwide and Complete Medical Communications, and funded by Shire AG.

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The Expert White Paper, based on patient research and independent expert opinion, demonstrates the substantial impact Attention Deficit/Hyperactivity Disorder (ADHD) can have on an individual from childhood into adulthood, in addition to the broader impact on families, welfare systems and national budgets. ADHD: Making the Invisible Visible was launched by co-authors Dr Susan Young, Dr Michael Fitzgerald, and Dr Maarten J Postma.

The findings of the Expert White Paper are supported by MEP, Nessa Childers, co-chair of the European Parliament Interest Group on Mental Health: “Mental health problems such as ADHD are unfortunately becoming far less of a priority on the political agenda, particularly due to the current economic crisis resulting in widespread cutbacks in resources. ADHD is one of the most neglected and misunderstood psychiatric conditions in Europe. Very few people affected by ADHD receive appropriate diagnosis and support, which leads to a significant impact on quality of life and society. I am pleased that this Expert White Paper lays out sensible and practical recommendations to help ensure better recognition and management of ADHD by all relevant stakeholders working in healthcare, schools, the criminal justice system and the workplace.”

ADHD affects 1 in 20 children and adolescents in Europe1 and, in many cases, persists into adulthood.2 The Paper highlights that adolescents with a history of childhood ADHD tend to experience greater peer rejection and have fewer close friendships3 and that children with ADHD are more likely to be bullied than their peers.4 Academic outcomes are also highlighted as a key impact area for people with ADHD if not managed effectively, and problems at school may evolve into difficulties finding and maintaining stable employment.5-7

“This Expert White Paper provides clear evidence that ADHD can have a marked impact on self-esteem, social functioning and academic outcomes,” said Dr Mary Baker, President of the European Brain Council. “It also shows that timely and effective management can improve quality of life and, with appropriate support, there is potential for people with ADHD to lead fulfilled and successful lives. We want to give everyone with ADHD this opportunity.”

The Paper also highlights the broader psychological impact of ADHD, particularly on parents who may also be affected and can experience depression, anxiety and stress.8,9 ADHD can also have a negative and pervasive impact, with wide-ranging associated costs in terms of healthcare or other services and long-term consequences for multiple aspects of life.10

The Expert White Paper sets out five clear, workable recommendations (including specific goals and a list of suggested actions) to help tackle the impact of ADHD on individuals, families and society:

  1. Increase informed awareness of ADHD
  2. Improve access to early and accurate diagnosis of ADHD, especially via the introduction of early identification and intervention programmes in different policy areas (i.e., education, mental health-related services, criminal justice services and the workplace)
  3. Improve access to ADHD treatment and develop a multidisciplinary patient-centred approach to ADHD care and support
  4. Involve and support patient organisations
  5. Encourage a patient-centred research agenda on ADHD, through more quantitative and qualitative research and through more involvement of allied stakeholders in developing priorities for future research.

“This Expert White Paper not only confirms the impact of ADHD, but most importantly presents solutions to address the societal impact, costs and long-term outcomes for affected individuals,” said Pedro Montellano, President of GAMIAN-Europe. “These concrete, expert-informed recommendations provide policy makers with a chance to improve the lives of those affected by ADHD and reduce the cost on national welfare systems across Europe. By working together we can make a real difference.”

NOTES TO EDITORS:

About the Expert White Paper

‘ADHD: Making the Invisible Visible’, An Expert White Paper on ADHD: policy solutions to address the societal impact, costs and long-term outcomes, in support of affected individuals.

This Expert White Paper project was initiated, facilitated and funded by Shire AG and supported by the European Brain Council (EBC) and GAMIAN-Europe (Global Alliance of Mental Illness Advocacy Networks). Medical writing support was provided by APCO Worldwide and Complete Medical Communications, and funded by Shire AG.

The Paper was developed on the basis of a European Expert Roundtable on ADHD, with the participation of clinicians, patient advocacy groups and representatives from the education and criminal justice systems. The Roundtable addressed specific issues and challenges around the management of ADHD and provided a forum for the discussion of policy recommendations. The three co-authors, Dr Susan Young, Professor Michael Fitzgerald and Professor Maarten J Postma, formulated the outcomes of the Roundtable into the White Paper, which reflects their views based on their clinical and scientific experiences.

About The European Brain Council (EBC; www.europeanbraincouncil.org)

The EBC is a coordinating council formed by European organisations in neurology, neurosurgery, psychiatry, basic brain research (neuroscience), as well as patient organisations and industry. It represents a vast network of patients, doctors and scientists, and these stakeholders along with its industrial partners make it suited to work in close partnership with the EU Commission, the European Parliament and the World Health Organization (WHO), as well as other decision-making bodies. The EBC was officially founded on 22 March 2002 in Brussels, and has offices in Brussels and Florence.

About GAMIAN-Europe (Global Alliance of Mental Illness Advocacy Networks; www.gamian.eu).
GAMIAN-Europe was established in 1998 as a representative coalition of patient organisations. Putting the patient at the centre of all issues of the EU healthcare debate, the organisation aims to bring together and support the development and policy influencing capacity of local, regional and national organisations active in the field of mental health. GAMIAN-Europe currently brings together some 50 organisations (local, regional and national) from 20 European countries.

About Shire AG
Shire AG is a wholly-owned subsidiary of Shire plc.

Shire enables people with life-altering conditions to lead better lives. Through our deep understanding of patients’ needs, we develop and provide healthcare in the areas of:

  • Behavioral Health and Gastro Intestinal conditions
  • Rare Diseases
  • Regenerative Medicine

as well as other symptomatic conditions treated by specialist physicians.

We aspire to imagine and lead the future of healthcare, creating value for patients, physicians, policymakers, payors and our shareholders.



Co-authors and Contributors

Name
 Title  Organisation
 Co-authors    
Susan Young Clinical Senior Lecturer in Forensic Clinical Psychology King’s College London, Institute of Psychiatry, UK
Michael Fitzgerald Henry Marsh Professor of Child and Adolescent Psychiatry  Trinity College, Dublin, Ireland
Maarten J Postma   Professor in Pharmacoeconomics University of Groningen, the Netherlands
 Contributors    
Phil Anderton Management Consultant and Director Justice in Mind Ltd
Kate Carr-Fanning Vice Chairperson


PhD candidate
Hyperactivity Attention Deficit Disorder (HADD), Ireland
School of Education, Trinity College, Dublin, Ireland
Goof Buijs Senior Consultant and Programme Manager School for Health Europe (SHE)

Dutch Institute for Healthcare Improvement (CBO), Utrecht, the Netherlands
Stephanie Clark Core group Aandacht  Adult ADHD Support Groups, Belgium
Dolores Gauci Immediate Past President GAMIAN-Europe (Global Alliance of Mental Illness Advocacy Networks)
Fulgencio Madrid Conesa President Spanish Federation of ADHD Supporting Associations (FEAADAH)
Myriam Menter  Chief Executive Officer  ADHS Deutschland, Germany
Joanne Norris President and Education Chair ADHD-ASC-LD Family Resources, Belgium
David Nutt Vice-President European Brain Council (EBC)
Gil Zalsman Chair of Child and Adolescent Psychiatry   European Psychiatric Association (EPA), France

 

Medical writing support was provided by APCO Worldwide and Complete Medical Communications, and funded by Shire AG

For further information please contact:

Just:: Health PR
Rachel Bonny
+44 20 8877 8426
rachel@justhealthpr.com

Ali Spink
+44 7980 924 298
ali@justhealthpr.com

European Brain Council
Evelyn Sipido
+39 055 43 62 098
evelyn.sipido@unifi.it

GAMIAN-Europe
Paul Arteel
+32 494 52 79 80


References

1.    Polanczyk G, et al. The worldwide prevalence of ADHD: a systematic review and metaregression analysis. Am J Psychiatry 2007;164:942-948.
2.    Lara C, et al. Childhood predictors of adult attention-deficit/hyperactivity disorder: results from the World Health Organization World Mental Health Survey Initiative. Biol Psychiatry 2009;65:46-54.
3.    Bagwell CL, et al. Attention-deficit hyperactivity disorder and problems in peer relations: predictions from childhood to adolescence. J Am Acad Child Adolesc Psychiatry 2001;40:1285-1292.
4.    Holmberg K, Hjern A. Bullying and attention-deficit hyperactivity disorder in 10 year olds in a Swedish community. Dev Med Child Neurol 2008;50:134-138.
5.    Biederman J, et al. Functional impairments in adults with self-reports of diagnosed ADHD: a controlled study of 1001 adults in the community. J Clin Psychiatry 2006;67:524-540.
6.    Barkley RA, et al. Young adult outcome of hyperactive children: adaptive functioning in major life activities. J Am Acad Child Adolesc Psychiatry 2006;45:192-202.
7.    Knapp M, et al. Economic outcomes in adulthood and their associations with antisocial conduct, attention deficit and anxiety problems in childhood. J Ment Health Policy Econ 2011;14:137-147.
8.    Cussen A, et al. Relationship between symptoms of attention-deficit/hyperactivity disorder and family functioning: a community-based study. Eur J Pediatr 2012;171:271-280.
9.    Pimentel MJ, et al. Mothers of children with attention deficit/hyperactivity disorder: relationship among parenting stress, parental practices and child behaviour. Atten Defic Hyperact Disord 2011;3:61-68.
10.    Shaw M, Hodgkins P, Caci H, et al. A systematic review and analysis of long-term outcomes in attention deficit hyperactivity disorder: effects of treatment and non-treatment. BMC Med. 2012;10(1):99.

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