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People with intellectual disabilities (IDs) often present with challenging behaviors (CBs) mostly due to inappropriate environments and mental and physical disorders. Integrative care is recommended to address CBs. However, in clinical practice, psychotropic drugs are often prescribed off-label for CBs, although the effectiveness is unclear, and side effects frequently occur. We conducted a cluster-randomized controlled study to investigate the effect of integrative care provided by a collaboration of an ID specialized mental healthcare team and participants' own ID service providers' care team on reducing CBs and inappropriate off-label psychotropic drug prescriptions compared with care as usual. Participants ( N = 33, aged 19-81 years) had a moderate, severe, or profound intellectual disability and used off-label psychotropic drugs. The primary outcome measures were the Aberrant Behavior Checklist and the total dose of psychotropic drug prescriptions. At the study endpoint of 40 weeks, we found no effect of the intervention on the total ABC score and on the total dose of psychotropic drug prescriptions. In the intervention group, however, the psychotropic drug dose decreased significantly, while CBs did not change. The small sample size and not-completed interventions due to organizational problems may have affected our findings. This study illustrates the difficulties in the implementation of integrative care.

Service providers may experience difficulties in providing appropriate care to optimize the functioning of individuals with intellectual disability and challenging behaviour. External consultation to identify and address the unmet support needs underlying the behaviour may be beneficial. Applying the multidimensional American Association Intellectual and Developmental Disabilities (AAIDD) model may facilitate this approach. We aimed to describe the content and outcomes of consultation for individuals with intellectual disability and challenging behaviour referred to the Dutch Centre for Consultation and Expertise in relation to the AAIDD model. Interventions were based on the clients' diagnostic, treatment, and support needs and were categorized according to the five dimensions of the AAIDD model. Outcomes of the consultations were assessed based on reports in the file and rated as 'clear improvement', 'improvement' or 'no improvement or deterioration'. In two-thirds of the 104 studied files, consultees were satisfied with the improvement in functioning. Interventions targeted the difficulties of the service providers in supporting their clients and were most often applied within the Health and Context dimensions of the AAIDD model. We may conclude that consultation of an expert team may be valuable to support the care providers, and the use of the AAIDD model may be helpful to address the unmet needs to improve the functioning of individuals with challenging behaviour.

International current best practice recommends the discontinuation of antipsychotics for challenging behaviours in people with intellectual disabilities (ID), due to lack of evidence of efficacy and risks of harmful side-effects. In clinical practice, discontinuation may be difficult. The aim of this study was to gain insight into prescribers' practice by investigating their experiences with the discontinuation of long-term antipsychotics for challenging behaviour. From professionals' associations thirty-four registered ID physicians, psychiatrists and specialist mental healthcare nurses were recruited who completed an online questionnaire in this survey-study. Almost all participants had attempted to deprescribe antipsychotics for their patients with ID. Sixty-five percent of participants achieved complete discontinuation in 0-25% of their patients, but none in over 50%. Barriers were a lack of non-pharmaceutical treatments for challenging behaviours and caregivers' and/or family concern. Seventy percent of participants indicated that their institutions had encouraged implementing their discontinuation policies in line with the new Dutch Act on Involuntary care and a new Dutch multidisciplinary guideline on problem behaviour in adults with ID. Support and facilitation of clinicians from institutions' managers and political and professional bodies may be helpful in further implementation of best practice in the treatment of challenging behaviour in people with ID.

People with intellectual disabilities (PwID) are frequently prescribed long-term antipsychotics for behaviours that challenge (BtC) despite the lack of proven effectiveness and the increased risks for side effects of these medications in this population. National and international good clinical practice guidelines recommend deprescribing antipsychotics for BtC, which is often not successful due to environmental and other factors. The involvement of all stakeholders, including PwID, is crucial for deprescribing. However, studies showed that PwID and/or their families are often not involved in decision-making regarding the (de)prescribing of antipsychotics despite their desire to get involved. Moreover, studies on the views of PwID regarding their experiences of withdrawing from antipsychotics are lacking. The aim of this study was to gain insight into the views of PwID by investigating their experiences of discontinuation of long-term prescribed antipsychotics for BtC. A qualitative study was set up. Seven experts by experience with mild intellectual disabilities were interviewed. After six interviews, data saturation was achieved. Interviews were transcribed verbatim. Using phenomenological analysis, themes on lived experiences were extracted. Each consecutive interview was analysed. The four main themes extracted from the interviews were the quality of treatment, knowledge and information about psychotropics and the process of withdrawal, support from the participants' environment and the coping style of the interviewees themselves.

Background: Staff supporting individuals with intellectual disabilities are at risk of burnout symptoms. Evidence suggests an association between exposure to challenging behaviours of individuals with intellectual disabilities and burnout symptoms of staff, but the protective role of staff psychological resources in this relation has been understudied., Method: We investigated the association between exposure to challenging behaviours and burnout symptoms of staff and the direct and moderating effects of several psychological resources. Staff (N = 1271) completed an online survey concerning burnout symptoms (subscale Emotional Exhaustion of the Maslach Burnout Inventory), exposure to challenging behaviours and a range of potential psychological resources. We examined main and moderating effects with multilevel analyses. In order to control for the multiple comparisons, P values corrected for false discovery rate (P FDR ) were reported., Results: We found a direct relation between exposure to challenging behaviours and increased levels of burnout symptoms in staff (b = .15, t(670) = 4.466, P FDR  < .0001). Perceived supervisor social support (b = -.97, t(627) = -7.562, P FDR  < .0001), staff self-efficacy (b = -.23, t(673) = -3.583, P FDR  < .0001), resilience (b = -.19, t(668) = -2.086, P FDR  < .05) and extraversion (b = -.20, t(674) = -3.514, P FDR  < .05) were associated with reduced burnout symptoms. None of the proposed psychological resources moderated the association between exposure to challenging behaviours and burnout symptoms of staff., Conclusions: Of the psychological resources found to be associated with reduced risk of burnout symptoms, staff self-efficacy and access of staff to supervisor social support seem to be the factors that can be influenced best. These factors thus may be of importance in reducing the risk of developing burnout symptoms and improving staff well-being, even though the current study was not designed to demonstrate causal relations between psychological resources and burnout symptoms., (© 2020 The Authors. Journal of Intellectual Disability Research published by MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and John Wiley & Sons Ltd.)

Background: The prevalence of antipsychotic drug use in people with intellectual disability (id) is high and largely off-label for challenging behaviour (cb), while evidence for their efficacy lacks. Side-effects frequently occur. Guidelines recommend appropriate psychotropic drug use by monitoring of effects and side-effects and discontinuing off-label use for cb. However, they are insufficiently adhered to. Discontinuation often fails due to behavioural worsening by largely unknown causes.
AIM: To offer an overview of results of off-label antipsychotic drug discontinuation and determinants for success or failure.
METHOD: Literature search in Medline, embase and Psycinfo.
RESULTS: Prospective open-label studies show that discontinuation in selected populations is possible in 33-40% and in placebo-controlled studies in 55-82%. Challenging behaviours, as measured with a standardized scale, mostly remained similar in those who succeeded as well as in those who failed to discontinue. Health problems, extrapyramidal symptoms, higher antipsychotic drug dosage, more severe cb, autism and male gender in participants, negative emotions towards cb, less knowledge on psychotropic drugs and male gender of support professional were related to less chance of successful discontinuation.
CONCLUSION: To improve results of antipsychotic drug discontinuation, proper diagnostics of underlying causes for cb, involvement of all stakeholders and enhancement of treatment opportunities for psychopathology in people with id are needed. Integrative care and knowledge development of id- and mental health care may be helpful.

Health-related quality of life in people with intellectual disabilities can be affected by challenging behaviors and side effects of antipsychotics. The aim of this study was to evaluate the effect of discontinuation antipsychotic drugs on health-related quality of life, including data from 2 discontinuation trials: an open-label trial of various antipsychotic drugs and a double-blind trial of risperidone. In both studies, antipsychotics were discontinued in 14 weeks, with steps of 12.5% of the baseline dosage every 2 weeks. Health-related quality of life was measured at baseline and at 16 weeks, and 40 weeks after baseline, by means of the RAND-36 (domains on physical well-being, role limitations caused by physical or emotional problems, vitality, pain, mental well-being, social functioning, general health, and changes in health). Participants who had completely discontinued antipsychotics according to the scheduled discontinuation and were still free of use at 40 weeks were compared with those who had incompletely discontinued. Physical well-being showed an increase in the group that had achieved complete discontinuation. Social functioning showed a decrease in the group that incompletely discontinued, which recovered at follow-up. Mental well-being decreased at 16 weeks but recovered at follow-up, regardless of complete or incomplete discontinuation. To conclude, discontinuation of antipsychotics had a positive effect on physical well-being when complete discontinuation was possible. When complete discontinuation was not possible, there was a negative effect on health-related quality-of-life domains. However, none of the unfavorable effects were irreversible., (© 2018, The American College of Clinical Pharmacology.)

Background: In people with intellectual disability (id) prescription of psychotropic drugs is often chronic and outside licensed indications.
AIM: To provide practical strategies for prescribing psychotropic drugs in people with id.
METHOD: We reviewed the literature and existing guidelines to summarize recommendations for prescribing psychotropic drugs in people with id.
RESULTS: The Diagnostic Manual - Intellectual Disability is a useful tool to facilitate diagnosis of mental disorders in people with id. Challenging behaviour in the absence of a psychiatric disorder is not a licensed indication for prescribing psychotropic drugs. Because of increased vulnerability for side effects in people with id, it is crucial to carry out a risk-benefit analysis before prescribing psychotropic drugs. In line with existing guidelines, we recommend monitoring of treatment and adverse effects with standardized scales adapted for id.
CONCLUSION: A careful decision-making process regarding initiation and continuation is essential to prevent insufficient as well as excessive pharmacotherapy in people with id.

Background: It 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., Methods: In-depth interviews with four intellectual disability physicians, two psychiatrists and five behavioural scientists were used to explore the implementation and use of guideline recommendations., Results: Barriers 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., Conclusions: To 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., (© 2018 John Wiley & Sons Ltd.)

Background: Many people with intellectual disabilities use long-term antipsychotics for challenging behaviour and experience side-effects from these drugs, which may affect Health-related Quality of Life (HQoL)., Aims: This study aimed to investigate HQoL in people with intellectual disabilities who use long-term antipsychotics and to investigate its associations with challenging behaviour and physical symptoms often associated with antipsychotics., Materials and Methods: We used baseline data of two studies of long-term used antipsychotics. The RAND-36 and the emotional and physical wellbeing subscales of the Personal Outcome Scale (POS) were used to assess HQoL. Associations with challenging behaviour, measured with the Aberrant Behavior Checklist (ABC) and physical symptoms (extrapyramidal, autonomic, metabolic) with HQoL outcomes were analysed by univariate and multivariate linear regression., Results: The mental subscales of the RAND-36 and emotional wellbeing of the POS were associated with the irritability and lethargy ABC-subscales. Physical wellbeing was negatively associated with parkinsonism urinary problems, dysphagia and temperature dysregulation possibly due to antipsychotics use., Conclusion: Both mental and physical wellbeing are related to challenging behaviour and physical symptoms associated with antipsychotics. Therefore HQoL could be a helpful measure when balancing benefits and disadvantages of antipsychotics prescribed for challenging behaviour., (Copyright © 2018 Elsevier Ltd. All rights reserved.)

Background/introduction: In this study, we investigated intellectual disability support professionals' knowledge and expectations towards effects of psychotropic drug use on behaviour and drug use in their clients, because shortcomings may lead to misinterpretations of behavioural symptoms and inappropriate drug use., Methods: Two self-designed questionnaires were used to measure the knowledge and expectations of 194 support professionals in 14 residential facilities regarding psychotropic drug use and effects of antipsychotics on behavioural, cognitive and mental functioning of people with intellectual disability. The psychometric properties of both questionnaires were adequate., Results: A majority of the professionals had unrealistic expectations regarding the positive effects of antipsychotics on cognitive and behavioural functioning, and 94% scored below the cut-off scores regarding knowledge; 60% indicated they needed education and training., Conclusions: To achieve sufficient collaboration of intellectual disability support professionals in reducing inappropriate psychotropic drug use of clients, vocational educational training is needed., (© 2017 John Wiley & Sons Ltd.)

Context: Thyroid hormones (TH) are important for normal brain development and abnormal TH regulation in the brain results in neurocognitive impairments. The type 2 deiodinase (D2) is important for local TH control in the brain by generating the active hormone T3 from its precursor T4. Dysfunction of D2 likely results in a neurocognitive phenotype. No mutations in D2 have been reported yet., Objective: The objective of the study was to identify D2 mutations in patients with intellectual disability and to test their functional consequences., Design, Setting, and Patients: The patients were selected from the multicenter Thyroid Origin of Psychomotor Retardation study, which is a cohort of 946 subjects with unexplained intellectual disability. Based on characteristic serum TH values, the coding region of the DIO2 gene was sequenced in 387 patients. Functional consequences were assessed by in vitro D2 assays or intact cell metabolism studies using cells transfected with wild-type or mutant D2., Results: Sequence analysis revealed two heterozygous mutations: c.11T>A (p.L4H) in three subjects and c.305C>T (p.T102I) in one subject. Sequence analysis of family members revealed several carriers, but no segregation was observed with thyroid parameters or neurocognitive phenotype. Extensive tests with different in vitro D2 assays did not show differences between wild-type and mutant D2., Conclusion: This study describes the identification and functional consequences of novel genetic variation in TH activating enzyme D2. Family studies and functional tests suggest that these variants do not underlie the neurocognitive impairment. Altogether our data provide evidence of the existence of rare but apparently harmless genetic variants of D2.

Individuals with intellectual disability frequently use antipsychotics for many years. This may have detrimental health effects, including neurological symptoms and metabolic and hormonal dysregulation, the latter possibly affecting bone metabolism. There is large variability in the degree in which antipsychotic agents lead to these health problems. In the current study we investigated potential determinants of physical symptoms and biological parameters known to be associated with use of antipsychotics in a convenience sample of 99 individuals with intellectual disability who had used antipsychotics for more than one year for behavioural symptoms. We focused on extrapyramidal symptoms; on overweight and presence of components of the metabolic syndrome; and on elevated plasma prolactin and bone turnover parameters. As predictor variables, we used patient (sex, age, genetic polymorphisms, and severity of intellectual disability) and medication use (type and dosage) characteristics. We found extrapyramidal symptoms to be present in 53%, overweight or obesity in 46%, and the metabolic syndrome in 11% of participants. Hyperprolactineaemia and one or more elevated bone turnover markers were present in 17% and 25%, respectively. Higher age and more severe intellectual disability were associated with dyskinesia and a higher dosage of the antipsychotic drug was associated with parkinsonism. Less severe intellectual disability was related to higher Body Mass Index. Use of atypical antipsychotics was associated with higher diastolic blood pressure and elevated fasting glucose. Clinicians who prescribe antipsychotics in individuals with intellectual disability should carefully balance the potential benefits of prolonged treatment against the risk of health hazards associated with the use of antipsychotics., (Copyright © 2013 Elsevier Ltd. All rights reserved.)

Antipsychotics are frequently prescribed agents in individuals with intellectual disability, often for behavioral symptoms. Efficacy of antipsychotics for this is ambiguous, so discontinuation should be considered. Weight gain and metabolic dysregulation are well-known adverse effects of antipsychotics which increase the risk of the metabolic syndrome. We performed a discontinuation study in 99 adults with intellectual disability, living in residential facilities who used antipsychotics for behavioral symptoms for more than 1 year. The aim of the present study was to investigate the effects of discontinuation of long-term used antipsychotics on weight, body mass index (BMI), and parameters of the metabolic syndrome and to investigate the influence of genetic polymorphisms and medication factors on these outcomes. Discontinuation of antipsychotics led to a mean decrease of 4 cm waist circumference, of 3.5 kg weight, 1.4 kg/m2 BMI, and 7.1 mm Hg systolic blood pressure. In those participants who had not completely discontinued use of antipsychotics we found a decrease in weight and BMI and an increase in fasting glucose. The presence of the C-allele of serotonin 5-hydroxytryptamine receptor polymorphism rs141334 was associated with higher waist circumference and higher plasma levels of triglycerides and lower levels of high-density lipoprotein. Achievement of complete discontinuation predicted a larger decrease in waist circumference and BMI. In conclusion, results of the study show the beneficial effects of discontinuation of long-term used antipsychotics on metabolic outcomes.

We present a case of a patient with primary nasal tuberculosis. Although this is a rare finding, it should be considered when a patient presents with a nasal obstruction. Smears for acid fast bacilli and cultures tend to be negative in nasal tuberculosis. Diagnosis is often based on histo- pathologic findings. Nasal TB is known to respond well to the regular treatment for (pulmonary) tuberculosis.