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AbstractBackgroundResults of discontinuation of antipsychotics in people with intellectual disability are variable and may depend on staff factors.MethodWe attempted to taper off antipsychotics in 14 weeks after which participants were free to restart. We investigated the influence of support professionals' feelings towards challenging behaviour, their knowledge of psychotropic drugs and clinicians' judgements of participants' behavioural functioning on whether or not antipsychotics were completely discontinued after 16, 28 and 40 weeks.ResultsOf the 129 participants, 61% achieved discontinuation at 16 weeks; at 28 and 40 weeks, 46% and 40% were completely discontinued. Staff's feelings of Depression/Anger towards their client's behaviour, less knowledge about psychotropic medication and clinicians' judgements of behavioural worsening were negatively associated with achievement of discontinuation.ConclusionsTo enhance discontinuation off‐label drug use, staff's feelings should be explored, their knowledge of psychotropic drugs improved and reasons for clinicians' judgements of participants' behavioural worsening investigated.

BackgroundIt is unknown why professionals' adherence to guideline recommendations on antipsychotic drug prescription in the intellectual disabilities care is insufficient. This study aimed to explore barriers and facilitators in the implementation and use of these recommendations.MethodsIn‐depth interviews with four intellectual disability physicians, two psychiatrists and five behavioural scientists were used to explore the implementation and use of guideline recommendations.ResultsBarriers in adhering to recommendations were lack of collaboration of different disciplines involved in the treatment of psychiatric and behavioural disorders and lack of enforcement of an appropriate monitoring of side‐ and treatment effects. When guideline recommendations were translated into organizational policies, clinicians were able to divide responsibilities and tasks, needed to appropriately implement guideline recommendations in daily clinical practice.ConclusionsTo facilitate the use of guideline recommendations, organizations should translate recommendations into organization‐specific policies, involving physicians and behavioural scientists in this process, while simultaneously creating more practical and technological support.

AbstractBackgroundEffects of staff provided positive behaviour support (PBS) for individuals with intellectual disabilities are unclear.MethodUsing a multicentre non‐randomised cluster controlled design, 26 teams of residential group homes, including 245 staff members of 167 individuals with intellectual disabilities, were allocated to a PBS or control group. Conducting multilevel analyses (n = 123) we examined individuals' changes in irritability, other challenging behaviours and quality of life.ResultsCompared to controls, irritability did not significantly decrease more in the intervention group, but lethargic behaviours did. Personal development and self‐determination significantly increased. Irritability of individuals in the PBS group with higher levels of irritability or lower levels of intellectual disability significantly reduced more compared to controls.ConclusionsPBS was effective in reducing irritability of individuals with severe levels of irritability or intellectual disabilities. Moreover, PBS decreased lethargic behaviours and improved several domains of quality of life.

AbstractBackgroundInterventions for challenging behaviours in individuals with intellectual disabilities benefit from outcome monitoring that takes clients' preferences into account. We determined clients' and representatives' preferred outcome domains and measures to secure their involvement in treatment decisions for challenging behaviours.MethodWe used an inclusive Delphi method. A focus group of individuals with mild intellectual disabilities and representatives of those with moderate and severe intellectual disabilities prepared the first round by assisting us in collecting possible outcomes. Panels of individuals with intellectual disabilities and representatives were composed to achieve consensus on instruments for preferred outcome domains.ResultsPreferred outcome domains were behaviour, side‐effects of psychotropic drugs, quality of life, daily functioning, caregiver burden and family quality of life. Corresponding outcome measures included self‐report, interview and proxy‐scales, including spoken versions.ConclusionIncluding the preferred domains on outcomes of interventions for challenging behaviours is recommended. Research on corresponding outcome measures is necessary.

AbstractBackgroundThis study aimed to examine the associations between individual staff and staff team characteristics and quality of life of individuals with intellectual disabilities and challenging behaviours.MethodWith multilevel analyses, we examined educational level, experience, attitudes and behaviours of 240 staff members, in relation to their perception of quality of life of 152 individuals with intellectual disabilities and challenging behaviours they cared for.ResultsTwo individual staff characteristics were related to better quality of life: higher educational and self‐reflection levels. Of the team characteristics, higher educational level, higher self‐efficacy and more friendly behaviour were associated with better quality of life. Unexpectedly, higher staff‐individual ratio was related to lower quality of life.ConclusionsBoth individual staff and staff team characteristics are associated with quality of life, indicating the need to take staff team characteristics into account when examining quality of life.

AbstractDespite the effectiveness of positive behavior support (PBS) in reducing challenging behaviors, the availability of PBS for individuals with intellectual disabilities is limited in many countries including the Netherlands. Training care staff supporting individuals with intellectual disabilities in PBS may be a way to improve the provision of PBS. We aimed to explore the preliminary effectiveness of a PBS training for staff in reducing challenging behaviors of individuals with intellectual disabilities. Using a one group, double pretest–posttest design, 24 staff members involved in the care of 11 adult individuals with intellectual disabilities and challenging behaviors participated. We assessed changes in challenging behaviors and quality of life of the individuals, in staff self‐efficacy in dealing with challenging behaviors, and in the use of restraints, using staff rated questionnaires, structured interviews, and medical files. At posttest, we found significant reductions in challenging behaviors, improved quality of life, and increased staff self‐efficacy, but no changes in the use of restraints. In contrast, no significant changes on any of the measures appeared between the two pretests. These findings suggest that a staff training in PBS may be effective for reducing challenging behaviors in individuals with intellectual disabilities.

The results leading to this publication have received funding from the Innovative Medicines Initiative 2 Joint Undertaking under grant agreement No 777394 for the project AIMS-2-TRIALS. This Joint Undertaking receives support from the European Union's Horizon 2020 research and innovation programme and EFPIA and AUTISM SPEAKS, Autistica, SFARI. The funders had no role in the design of the study; in the collection, analyses, or interpretation of data; in the writing of the manuscript; or in the decision to publish the results. Any views expressed are those of the author(s) and not necessarily those of the funders.

EMTICS Collaborative Group. ; Genetic predisposition, autoimmunity and environmental factors [e.g. pre- and perinatal difficulties, Group A Streptococcal (GAS) and other infections, stress-inducing events] might interact to create a neurobiological vulnerability to the development of tics and associated behaviours. However, the existing evidence for this relies primarily on small prospective or larger retrospective population-based studies, and is therefore still inconclusive. This article describes the design and methodology of the EMTICS study, a longitudinal observational European multicentre study involving 16 clinical centres, with the following objectives: (1) to investigate the association of environmental factors (GAS exposure and psychosocial stress, primarily) with the onset and course of tics and/or obsessive–compulsive symptoms through the prospective observation of at-risk individuals (ONSET cohort: 260 children aged 3–10 years who are tic-free at study entry and have a first-degree relative with a chronic tic disorder) and affected individuals (COURSE cohort: 715 youth aged 3–16 years with a tic disorder); (2) to characterise the immune response to microbial antigens and the host's immune response regulation in association with onset and exacerbations of tics; (3) to increase knowledge of the human gene pathways influencing the pathogenesis of tic disorders; and (4) to develop prediction models for the risk of onset and exacerbations of tic disorders. The EMTICS study is, to our knowledge, the largest prospective cohort assessment of the contribution of different genetic and environmental factors to the risk of developing tics in putatively predisposed individuals and to the risk of exacerbating tics in young individuals with chronic tic disorders. ; This project has received funding from the European Union's Seventh Framework Programme for research, technological development and demonstration under Grant agreement no. 278367. Schrag was supported by the National Institute for Health Research UCLH Biomedical Research Centre, and Müller, Burger, Schnell and Weidinger by Stiftung Immunität und Seele. This research was supported by the National Institute for Health Research Biomedical Research Centre at Great Ormond Street Hospital for Children NHS Foundation Trust and University College London (Heyman); partially sponsored by GSK Vaccines (Margarit, Bartolini); and Deutsche Forschungsgemeinschaft (DFG): projects 1692/3-1, 4-1 (Münchau). ; Peer reviewed

The results leading to this publication have received funding from the Innovative Medicines Initiative 2 Joint Undertaking under grant agreement No 777394 for the project AIMS-2-TRIALS. This Joint Undertaking receives support from the European Union's Horizon 2020 research and innovation programme and EFPIA and AUTISM SPEAKS, Autistica, SFARI. The funders had no role in the design of the study; in the collection, analyses, or interpretation of data; in the writing of the manuscript; or in the decision to publish the results. Any views expressed are those of the author(s) and not necessarily those of the funders.

The results leading to this publication have received funding from the Innovative Medicines Initiative 2 Joint Undertaking under grant agreement No 777394 for the project AIMS-2-TRIALS. This Joint Undertaking receives support from the European Union's Horizon 2020 research and innovation programme and EFPIA and AUTISM SPEAKS, Autistica, SFARI. The funders had no role in the design of the study; in the collection, analyses, or interpretation of data; in the writing of the manuscript; or in the decision to publish the results. Any views expressed are those of the author(s) and not necessarily those of the funders.

Common risk factors for psychiatric and other brain disorders are likely to converge on biological pathways influencing the development and maintenance of brain structure and function across life. Using structural MRI data from 45,615 individuals aged 3–96 years, we demonstrate distinct patterns of apparent brain aging in several brain disorders and reveal genetic pleiotropy between apparent brain aging in healthy individuals and common brain disorders. ; The author list between I.A. and M.Z. is in alphabetic order. The authors were funded by the Research Council of Norway (276082 LifespanHealth (T.K.), 213837 (O.A.A), 223273 NORMENT (O.A.A.), 204966 (L.T.W.), 229129 (O.A.A.), 249795 (L.T.W.), 273345 (L.T.W.) and 283798 SYNSCHIZ (O.A.A.)), the South-Eastern Norway Regional Health Authority (2013-123 (O.A.A.), 2014-097 (L.T.W.), 2015-073 (L.T.W.) and 2016083 (L.T.W.)), Stiftelsen Kristian Gerhard Jebsen (SKGJ-MED-008), the European Research Council (ERC) under the European Union's Horizon 2020 research and innovation programme (ERC Starting Grant, Grant agreement No. 802998 BRAINMINT (L.T.W.)), NVIDIA Corporation GPU Grant (T.K.), and the European Commission 7th Framework Programme (602450, IMAGEMEND (A.M.-L.)). ; acceptedVersion