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European clinical network: autism spectrum disorder assessments and patient characterisation

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Abstract

The United Nations and World Health Organisation have identified autism spectrum disorder (ASD) as an important public health issue across global mental health services. Although a range of tools exist to identify and quantify ASD symptoms, there is a lack of information about which ASD measures are used in different services worldwide. This paper presents data from a large survey of measures used for patient characterisation in major ASD research and clinical centres across Europe collected between June 2013 and January 2014. The objective was to map the use of different instruments used to characterise ASD, comorbid psychopathology and cognitive and adaptive ability for patient diagnostic and characterisation purposes across Europe. Sixty-six clinical research sites diagnosing 14,844 patients per year contributed data. The majority of sites use the well-established Autism Diagnostic Observation Schedule (ADOS) and the Autism Diagnostic Interview (ADI) instruments, though the proportion of sites in Western Europe using the ADI was almost double the rate in Eastern Europe. Approximately half the sites also used the Social Communication Questionnaire (SCQ) and Social Responsiveness Scale (SRS), although use of the SRS was over three times higher in Western Europe compared with Eastern Europe. The use of free/open access measures was lower than commercially available tools across all regions. There are clinical and scientific benefits in encouraging further convergence of clinical characterisation measures across ASD research and clinical centres in Europe to facilitate large-scale data sharing and collaboration, including clinical trials of novel medications and psychological interventions.

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Notes

  1. Analysis was restricted to the six most common ASD questionnaire measures: SCQ, SRS, AQ, ABC, CHAT/M-CHAT, CARS.

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Acknowledgments

Members of the EU-AIMS clinical network who contributed information are: Ariel Como, Entela Vakiari (Albania); Sergey Bukin, Andrei Kirpichenko (Belarus); Jan Croonenberghs, Herbert Roeyers (Belgium); Smail Zubcevic (Bosnia & Herzegovina); Petar Petrov, Nadia Polnareva (Bulgaria); Jasmina Ivsac Pavlisa (Croatia); Iva Dudova, Michal Hrdlicka, Hana Oslejskova (Czech Republic); Niels Bilenberg, Marlene Briciet Lauritsen (Denmark); Hanna Ebeling, Eija Kärnä, Tani Pekka, Andre Sourander (Finland); Eva-Evangelina Bonda, David Cohen, Bernadette Roge (France); Tobias Banaschewski, Katja Becker, Matthais Dose, Christine Freitag, Franziska Gaese, Inge Kamp-Becker, Volker Mall, Michele Noterdaeme, Luise Poustka, Ulrike Schulze, Judith Sinzig, Martin Sobanski (Germany); Konstantinos Francis (Greece); Anna Balázs (Hungary); Evald Saemundsen (Iceland); Louise Gallagher (Ireland); Luigi Mazzone, Filippo Muratori, Antonio Persico, Alessandro Zuddas (Italy); Martine Weber (Luxembourg); Tatjana Zorcec (Macedonia); John Farrugia (Malta); Jan Buitelaar, Sarah Durston, Pieter Hoekstra, Emma van Daalen (Netherlands); Rafal Kawa (Poland); Magdalena Budisteanu (Romania); Svytoslav Dovbyna, Tatiana Morozova (Russia); Milica Pejovic Milovancevic (Serbia); Igor Škodácek (Slovakia); Marta Macedoni-Luksic (Slovenia); Rosa Calvo, Ricardo Canal Bedia, Manuel Franco, Joaquin Fuentes, Mara Parellada Manuel Posada, Soraya Geijo Uribe (Spain); Sven Bölte (Sweden); Ronnie Gundelfinger, Susanna Walitza (Switzerland); Michael Absoud, Jonathan Green; Kathy Leadbitter, Sue Leekam, Ann le Couteur, Helen McConachie, Grainne McAlonan, Declan Murphy, Jeremy Parr, Vicky Slonims (UK); Igor Martsenkovsky (Ukraine). Thanks also to Andy Shih and Amy Daniels from Autism Speaks for their help. This work was supported by EU-AIMS (http://www.eu-aims.eu/) who is funded by the Innovative Medicines Initiative Joint Undertaking under grant agreement n° 115300, composed of financial contribution from the European Union’s Seventh Framework Program (FP7/2007-2013), from the EFPIA companies in kind contribution and from Autism Speaks (http://www.autismspeaks.org/). TC was supported by COST Action BM1004 funded by the European Science Foundation.

Conflict of interest

Jan K Buitelaar has been in the past 3 years a consultant to/member of advisory board of/and/or speaker for Janssen Cilag BV, Eli Lilly, and Servier. He is not an employee of any of these companies, and not a stock shareholder of any of these companies. He has no other financial or material support, including expert testimony, patents and royalties. Will Spooren is an employee of F. Hoffman-La Roche.

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Authors and Affiliations

  1. Department of Psychology, Institute of Psychiatry, Psychology and Neuroscience, King’s College London, London, UK

    Karen L. Ashwood & Tony Charman

  2. Department of Cognitive Neuroscience, Radboud University Medical Centre, Donders Institute for Brain, Cognition and Behaviour, Nijmegen, The Netherlands

    Jan Buitelaar

  3. Karakter Child and Adolescent Psychiatry University Centre, Nijmegen, The Netherlands

    Jan Buitelaar

  4. Department of Forensic and Neurodevelopmental Sciences, Institute of Psychiatry, Psychology and Neuroscience, King’s College London, London, UK

    Declan Murphy

  5. Psychiatry Disease Area, F. Hoffman-La Roche Ltd, Basel, Switzerland

    Will Spooren

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  1. Karen L. Ashwood
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  2. Jan Buitelaar
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Correspondence to Karen L. Ashwood.

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Ashwood, K.L., Buitelaar, J., Murphy, D. et al. European clinical network: autism spectrum disorder assessments and patient characterisation. Eur Child Adolesc Psychiatry 24, 985–995 (2015). https://doi.org/10.1007/s00787-014-0648-2

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