Challenges and Inequalities of Opportunities in European Psychiatry Research
The Example of Psychodiagnostic Tool Availability in Research on Early Autism Identification
Abstract
Abstract. Europe is diverse in terms of economy, cultures, socio-demography, and languages. A crucial aspect of psychiatric research is the availability of standardized screening, diagnostic, and characterization instruments. We fine-mapped the accessibility of 14 clinical scales and cognitive tests for the assessment of early childhood Autism Spectrum Disorder (ASD; e.g., ADOS, ADI-R, SCQ, SRS, CHAT, MESL) within 21 European countries. These tools are essential for internationally competitive early ASD detection research. We identified a considerable variation not only in the availability, but also psychometric standardization, and formal distribution of the instruments between the countries, privileging English speaking, high-income, and highly populated European countries. Absence of country-specific standardization was a problem across many countries, independent of income and size. Findings demonstrate, on a concrete level, the challenges in creating equal early ASD identification research opportunities in Europe, and the need for increased funding for instrument development and validation. We discuss the reasons, implications, and consequences of this inequity and ways of reducing it.
References
2003). Conducting psychiatric research in the developing world: Challenges and rewards. British Journal of Psychiatry, 182, 185–187.
(2013). Retningslinjer for diagnostik og behandling af ADHD hos voksne
([Guidelines for diagnosis and treatment of ADHS] . Copenhagen: Dansk Psykiatrisk Selskab. http://dpsnet.dk/wp-content/uploads/2014/12/2013-11-29_retningslinjer_adhd_ok.pdf2014). European clinical network: Autism spectrum disorder assessments and patient characterisation. European Child & Adolescent Psychiatry, 24, 985–995. doi: 10.1007/s00787-014-0648-2
(2011). Autism spectrum conditions: FAQs on autism, Asperger Syndrome, and atypical autism answered by international experts. Göttingen, Germany: Hogrefe Publishing.
(2013). Infants at risk for autism: A European perspective on current status, challenges and opportunities. European Child & Adolescent Psychiatry, 22, 341–348. doi: 10.1007/s00787-012-0368-4
(2004). Diagnostic Observation Scale for Autistic Disorders: Initial results of reliability and validity. Zeitschrift fur Kinder- und Jugendpsychiatrie und Psychotherapie, 32, 45–50.
(2008). Assessing autistic traits: Cross-cultural validation of the Social Responsiveness Scale (SRS). Autism Research, 1, 354–363. doi: 10.1002/aur.49
(2013). Measurement Issues: Screening and diagnostic instruments for autism spectrum disorders – lessons from research and practice. Child and Adolescent Mental Health, 18, 52–63. doi: 10.1111/j.1475-3588.2012.00664.x
(2011). Grand challenges in global mental health. Nature, 475, 27–30.
(2008). Early behavioral intervention, brain plasticity, and the prevention of autism spectrum disorder. Development and Psychopathology, 20, 775–803. doi: 10.1017/S0954579408000370
(2009). The 5/95 Gap on the dissemination of mental health research: The World Psychiatric Association (WPA) task force report on project with editors of low and middle income (LAMI) countries. African Journal of Psychiatry, 12, 33–39.
(1996). World mental health: Problems and priorities in low-income countries. Oxford, UK: Oxford University Press.
(2003). Collaborating with developing countries in psychiatric research. British Journal of Psychiatry, 182, 188–189.
(2012). Global prevalence of autism and other pervasive developmental disorders. Autism Research, 5, 160–179. doi: 10.1002/aur.239
(2014). The state of the art in European research on reducing social exclusion and stigma related to mental health: A systematic mapping of the literature. European Psychiatry, 29, 381–389. doi: 10.1016/j.eurpsy.2014.02.007
(2014). Screening for autism spectrum disorders: State of the art in Europe. European Child & Adolescent Psychiatry, 23, 1005–1021. doi: 10.1007/s00787-014-0555-6
(2000). The 10/90 report on health research 2000. Geneva, Switzerland: Author.
. (2011). Cost of disorders of the brain in Europe 2010. European Neuropsychopharmacology, 21, 718–779. doi: 10.1016/j.euroneuro.2011.08.008
(2012). Standardizing ADOS domain scores: Separating severity of social affect and restricted and repetitive behaviors. Journal of Autism and Developmental Disorders, 44, 2400–2412. doi: 10.1007/s10803-012-1719-1
(1999). Psychiatric epidemiology and the global public health agenda. International Journal of Mental Health, 28, 6–14.
(2013). Multisite study of new Autism Diagnostic Interview-Revised (ADI-R) algorithms for toddlers and young preschoolers. Journal of Autism and Developmental Disorders, 43, 1527–1538. doi: 10.1007/s10803-012-1696-4
(2012). The state of psychiatry in Europe: Facing the challenges, developing consensus. International Review of Psychiatry, 24, 274–277. doi: 10.3109/09540261.2012.697264
(2014). The MAL-ED cohort study: Methods and lessons learned when assessing early child development and caregiving mediators in infants and young children in 8 low-and middle-income countries. Clinical Infectious Diseases, 59(Suppl. 4), S261–S272.
(2011). Autism in under 19s: Recognition, referral and diagnosis. Clinical guideline. Retrieved from https://www.nice.org.uk/guidance/cg128/resources/autism-in-under-19s-recognition-referral-and-diagnosis-35109456621253
. (2011). Recurrence risk for autism spectrum disorders: A Baby Siblings Research Consortium study. Pediatrics, 128, e488–495. doi: 10.1542/peds.2010-2825
(2014). Developing countries: The outcomes paradox. Nature, 508, S14–15. doi: 10.1038/508S14a
(2003). Autism Diagnostic Interview-Revised (ADI-R). Los Angeles, CA: Western Psychological Services.
(2004). Under-representation of developing countries in the research literature: Ethical issues arising from a survey of five leading medical journals. BMC Medical Ethics, 5, E5. doi: 10.1186/1472-6939-5-5
(2015). The added value of the combined use of the Autism Diagnostic Interview-Revised and the Autism Diagnostic Observation Schedule: Diagnostic validity in a clinical Swedish sample of toddlers and young preschoolers. Autism, 19, 187–199. doi: 10.1177/1362361313516199
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