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Prevalence, course and treatment effects in youth (0-25 years) with mild intellectual disability or borderline intellectual functioning in large existing cohorts and a new idiosyncratically-dynamically mapped treatment cohort.

Projectomschrijving

LVB

Er is nog zeer weinig onderzoek gedaan naar, of met, jongeren met een licht verstandelijkebeperking (LVB). De DSM-5, het diagnostisch handboek voor psychische stoornissen, omschrijft een LVB als een neurobiologische ontwikkelingsstoornis, waarbij beperkingen bestaan in het verstandelijk en adaptief functioneren, zoals zelfredzaamheid. In Nederland bestaan geen cijfers over het aantal jongeren met een LVB. Ook is er nauwelijks informatie over risico- en beschermende factoren die het beloop van het psychisch en adaptief functioneren beïnvloeden. Echter bestaan er in Nederland grote, toonaangevende bevolkingsonderzoeken (Generation R, TRAILS, ABCD, Lifelines, NTR) en klinische cohorten met geschikte gegevens om hier zicht op te krijgen.

Doel

In dit onderzoek zullen de gegevens uit bovengenoemde studies worden gebundeld en geanalyseerd. De uitkomsten worden dan gebruikt om de behandeling van jongeren met een LVB te optimaliseren en monitoren in een nieuw longitudinaal cohort. Dit wordt gedaan middels een innovatieve, persoonsgerichte methode, namelijk iamYu (genomineerd voor de Medische Inspirator Prijs 2019).

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Samenvatting van de aanvraag

An estimated 2 million people have difficulty obtaining proper mental health care in the Netherlands due to their low IQ and adaptive deficits (Volkskrant, 26-5-2019), and the Dutch justice system and social services are faced with an overrepresentation of people with mild intellectual disability or borderline intellectual functioning (MID/BIF). Yet, despite the mental health and societal burden, accurate data on the prevalence, course and effects of treatment in this group are lacking. While the DSM did not place great emphasis on adaptive functioning in MID/BIF historically, the DSM-5 now emphasizes the need to asses both intellectual ability (through clinical assessment and standardized testing of intelligence) and adaptive functioning. Moreover, the level of adaptive functioning (i.e. conceptual, practical, social adaptive functioning) rather than IQ test scores now determines the severity of the intellectual disability, thus yielding better diagnostic constructs with greater clinical relevance. As a result of this change, there are no reliable estimates of the prevalence of MID/BIF in Dutch youth according to the DSM-5 definition. Furthermore, there are also no accurate estimates of the prevalence of mental health problems in this population. This lack of knowledge stands in sharp contrast with the notion that young people with MID/BIF experience mental health problems at a rate which far exceeds that of the general population. Given the higher prevalence of mental health problems in young people with MID/BIF, one would expect an increased prevalence of mental health care consumption. Yet only 10% to 40% of those in need receive mental health care. Whether or not people with MID/BIF actually need mental health treatment depends for a large part on the presence of risk and protective factors. Yet, there is a lack of research on risk and protective factors affecting the course of adaptive behavior and mental wellbeing in this population. Finally, when young people with MID/BIF do get treatment, they often feel little involvement in determining their treatment process and are therefore often not sufficiently motivated. Personalized treatment can deal with the complexity, the poor connection and limited involvement. Such a personalized approach is currently not available. Therefore, the central aim of this project is to shed new detailed light on the prevalence, course and treatment effects in youth with MID/BIF in large existing cohorts and to develop a new dynamically mapped treatment cohort, which will feed newly gained information and knowledge directly into clinical practice. We will address our central aims with four work packages (WPs). In WP1 we estimate the prevalence of MID/BIF with the new emphasis on adaptive functioning, in line with the DSM-5 definition, and the prevalence of comorbid mental health problems in youth with MID/BIF, compared to youth without MID/BIF by means of analysis of a large aggregated data-set. Five large Dutch population-based cohort studies are committed to participate: Generation R, TRAILS, Lifelines, ABCD-study, and the Netherlands Twin Registry. These datasets include about +/-24.000 unique individuals distributed across the Netherlands up to age 25 with data on intellectual functioning and aspects of adaptive functioning. In WP2 we will estimate the prevalence of (non-)treatment in youth with MID/BIF compared to youth without MID/BIF and identify predictors of (non-)treatment across these two groups. WP3 focuses on risk and protective factors influencing longitudinal changes in adaptive functioning and mental health problems. For this purpose, in addition to the five population-based cohort studies, we will use six Routine Outcome Monitoring (ROM) data samples available from specialized centers spread across the Netherlands (Karakter, 's Heeren Loo, Pluryn, De Bascule, De Jutters, and Ambiq). These cohorts are unique as they consist of individuals with clinically established MID/BIF and include information about comorbid mental health problems and information on treatment. Finally, in WP4 we will map the idiosyncratic and dynamic nature of treatment processes in a new-to-build clinical cohort of N=150 youths/young adults with MID/BIF in the participating clinical centers, thereby providing opportunities to optimize client involvement and treatment outcomes. Patient participation Interest organizations Zorgbelang Inclusief and LFB (Landelijk Federatie Belangenverenigingen Onderling Sterk) will participate throughout the project. Applicants of this project will be involved in guideline development for diagnosis and treatment of mental health problems with a focus on adaptive functioning in young people with MID/BIF. Moreover, participating clinical centers provide a direct opportunity to apply findings in clinical care. The project is uniquely embedded in the Academic Collaborative Center Kajak (Academische Werkplaats Kajak) ensuring implementation and sustainability.

Onderwerpen

Kenmerken

Projectnummer:
636340003
Looptijd: 53%
Looptijd: 53 %
2020
2028
Onderdeel van programma:
Gerelateerde subsidieronde:
Projectleider en penvoerder:
prof. dr. N.N.J. Lambregts-Rommelse PhD
Verantwoordelijke organisatie:
Radboud Universitair Medisch Centrum