Publications
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Tarasova D, Rösner P, Deb S, et al., 2024, Validation of the German version of the DSQIID in adults with intellectual disabilities, Research in Developmental Disabilities, Vol: 148, ISSN: 0891-4222
BACKGROUND: An observer-rated screening questionnaire for dementia for people with intellectual disabilities (ID), DSQIID, was developed in the UK. So far, the German version has not yet been validated in adults with ID. AIMS/METHODS: We validated a German version of DSQIID (DSQIID-G) among adults with ID attending a German clinic. PROCEDURES/OUTCOMES: DSQIID-G was completed by the caregivers of 104 adults with ID at baseline (T1), 94 at six months (T2) and 83 at 12 months (T3). A Receiver Operating Curve (ROC) was used to determine the total DSQIID-G cutoff score for the best fit between sensitivity and specificity. RESULTS: Sixteen of the 104 participants at T1 (15%) received a diagnosis of dementia. At T1, the scores among the non-dementia group ranged from 0 to 33 (mean: 6.7; SD: 7.65), and the dementia group ranged from 3 to 43 (mean: 22.12; SD: 11.6). The intergroup difference was statistically significant (W: 158; p < .001) (AUC:.89). A total score of 9 provided the best fit between sensitivity (.94) and specificity (.72). CONCLUSIONS AND IMPLICATIONS: DSQIID-G total score can discriminate between dementia and non-dementia cases in adults with ID. A lower cutoff score with a higher sensitivity is desirable for a screening instrument.
Deb S, Limbu B, 2024, Training direct care staff to empower adults with intellectual disabilities and their families to reduce overmedication, Advances in Neurodevelopmental Disorders, Vol: 8, Pages: 192-197, ISSN: 2366-7532
ObjectivesPeople with intellectual and developmental disabilities (IDD) and autism are subject to restrictive practices like physical restraint and the overuse of psychotropic medications for challenging behavior. People with disabilities and their families are often not involved in shared decision-making for prescription and other care planning, which may violate the UN Human Rights Charter.MethodsOne way of reducing overmedication is by empowering adults with IDD and their family caregivers to collaborate in the decision to use medications. SPECTROM (https://spectrom.wixsite.com/project), a training program for direct care workers, was developed to help reduce the overmedication of these people. This article presents ideas on how SPECTROM resources could empower adults with IDD and their families to influence their care decisions, including psychotropic prescribing.ResultsInformation provided in 32 easy-read leaflets in SPECTROM on psychotropic medications can be used to improve shared decision-making involving people with IDD and their families. Similarly, the Yellow Passport, an easy-read health record, could help information sharing among care service providers, thus improving their health care. SPECTROM has one module devoted to effectively engaging with people with IDD to improve their communication and help them with their skills building.ConclusionsCurrently, very limited evidence exists on the effects of SPECTROM to empower individuals with IDD and their families in reducing psychotropic medications for challenging behaviors. In addition to the two pilot studies on SPECTROM from UK and Australia, further research is needed to explore the evidence supporting the above suggestions.
Deb S, Limbu B, Bianco A, et al., 2024, Ethical prescribing of psychotropic medications for people with neurodevelopmental disorders, Advances in Neurodevelopmental Disorders, Vol: 8, Pages: 198-207, ISSN: 2366-7532
ObjectivesPeople with neurodevelopmental disorders (NDDs) such as intellectual and developmental disabilities (IDD) and autism are subjected to restrictive practices like physical restraint and the overuse of psychotropic medications for challenging behaviour in the absence of a psychiatric disorder. This practice may lead to human rights violations. Rational and evidence-based shared decision-making for person-centred planning will help reduce this practice.MethodsWe have discussed in this paper the issue of the overmedication of people with NDD, explaining how this practice may violate the United Nations (UN) Convention on the Rights of Persons with Disabilities (CRPD).ResultsWe have discussed how the following UN CRPD Articles may be affected by overmedication, including Article 15 (degrading treatment or punishment), 16 (abuse), 17 (the integrity of the person), and 25 (health). The other Articles that may be indirectly affected by this practice are 5 (equality and non-discrimination), 9 (accessibility), 19 (independent living and community inclusion), 21 (access to information), 24 (education), 26 (rehabilitation), 27 (work and employment), 28 (adequate living standard), and 30 (participation in recreation and leisure).ConclusionsOvermedication of people with NDD, particularly the off-licence use of psychotropics for challenging behaviour, the side effects of these medications impacting the person’s quality of life are likely to violet several UN Articles on Rights of Persons with Disabilities. Following the right guidelines may help reduce these human rights violations.
Deb S, Roy M, Limbu B, 2023, Pharmacological management of psychopathology in people with intellectual disabilities and/or autism spectrum disorder, BJPsych Advances, Vol: 29, Pages: 322-333, ISSN: 2056-4686
On average, 49–63% of people with intellectual disabilities and/or autism spectrum disorder (ASD) are prescribed psychotropic medications to treat psychopathology, including psychiatric illness, behaviours that challenge and the core symptoms and associated behaviours of these developmental disorders. In many cases, psychotropics, particularly antipsychotics, are used off-label without a proper indication, particularly to manage behaviours that challenge. The RCTs show moderate evidence supporting the efficacy of low-dose risperidone and some preliminary evidence for aripiprazole in treating behaviours that challenge among children with ASD and/or intellectual disabilities. The RCT-based evidence for the other psychotropics is equivocal, so no definitive conclusions can be made on their efficacy. Polypharmacy and the use of high doses of antipsychotics are prevalent in this population, leading to the risk of adverse events and drug–drug interactions. Despite various national and international guidelines, and government initiatives encouraging reduced psychotropic use, there is little evidence of this happening; on the contrary, the use of antidepressants, mood stabilisers and benzodiazepines may be increasing. A concerted multi-agency effort is urgently needed to address this significant public health concern of the overmedication of people with intellectual disabilities and/or ASD.
Deb S, Roy M, Limbu B, et al., 2023, Randomised controlled trials of antipsychotics for people with autism spectrum disorder: a systematic review and a meta-analysis, Psychological Medicine, ISSN: 0033-2917
BackgroundDespite unclear evidence to support the long-term use of antipsychotics to treat challenging (problem) behaviours in people with autism in the absence of a psychiatric disorder, this practice is common.MethodsWe conducted a systematic review and meta-analysis of all randomised controlled trials (RCTs) involving antipsychotics for people with autism of all ages, irrespective of the outcomes assessed. We searched seven databases and hand-searched ten relevant journals. Two authors independently screened titles, abstracts and full papers and extracted data using the Cochrane Handbook template. We conducted meta-analyses of outcomes and the rate of adverse events.ResultsWe included 39 papers based on 21 primary RCTs that recruited 1482 people with autism. No RCT assessed any psychiatric disorder outcome, such as psychoses or bipolar disorder. A meta-analysis of ten placebo-controlled RCTs showed a significantly improved Aberrant Behaviour Checklist-Irritability score in the antipsychotic group with an effect size of −6.45 [95% confidence interval (CI) −8.13 to −4.77] (low certainty). Pooled Clinical Global Impression data on 11 placebo-controlled RCTs showed an overall effect size of 0.84 (95% CI 0.48 to 1.21) (moderate certainty). There was a significantly higher risk of overall adverse effects (p = 0.003) and also weight gain (p < 0.00001), sedation (p < 0.00001) and increased appetite (p = 0.001) in the antipsychotic group.ConclusionsThere is some evidence for risperidone and preliminary evidence for aripiprazole to significantly improve scores on some outcome measures among children with autism but not adults or for any other antipsychotics. There is a definite increased risk of antipsychotic-related different adverse effects.
Wilson NJ, Barratt M, Jorgensen M, et al., 2023, Training support workers about the overmedication of people with intellectual disabilities: an Australian pre–post pilot study, Journal of Intellectual Disability Research, Vol: 67, Pages: 519-530, ISSN: 0964-2633
BackgroundThere is evidence that psychotropic medications are overprescribed and overused to manage behaviours of concern for people with intellectual disabilities. Disability support workers and support staff lack education and training on the administration and safety of psychotropic medication use. This study aimed to test the applicability and preliminary efficacy of SPECTROM, an education programme developed in the UK, in an Australian context.MethodsThe training comprises two parts: Module 1 encompasses psychotropic medications, their use and side effects. Module 2 focuses on non-pharmacological interventions for supporting people with behaviours of concern. Thirty-three participants attended the training course and completed pre-training and post-training surveys on the Psychotropic Knowledge Questionnaire and Management of Aggression and Violence Attitude Scale-Revised at four time points: pre-training, 2 weeks, 3 months and 5 months post-training.ResultsPsychotropic Knowledge Questionnaire scores showed statistically significant post-training improvement at all post-training time points (P < 0.05). Management of Aggression and Violence Attitude Scale-Revised scores were high at pre-training and did not change significantly at any of the post-training survey time points. A 2-week post-training feedback questionnaire reported 80% agreement that the training programme was appropriate, useful and valid. Only 36% of participants completed questionnaires at all time points.ConclusionsSPECTROM training increased staff knowledge of psychotropic medications, yet loss of participants was high. Further refinement of the applicability of the training for the Australian context and evaluation of the feasibility of implementation, clinical and cost-effectiveness of the programme are required.
, 2023, Recent advances in psychopathology in neurodevelopmental disorders from bench to bedside., Publisher: MDPI, ISBN: 978-3-0365-7415-8
Psychopathology, including functional psychiatric disorders such as schizophrenia, bipolar disorder, major depressive disorder and anxiety disorders, and also dementia and challenging behaviour, is common in people with neurodevelopmental disorders (NDDs) such as intellectual and developmental disabilities (IDD), autism spectrum disorder (ASD) and attention deficit hyperactivity disorder (ADHD) and is the cause for a major public health concern. Much research has been done in the last three decades to understand this issue and develop effective interventions. Still, a lot remains unknown for which good quality translational research is urgently needed. In this special issue, we drew together research on recent advances addressing these issues. The areas covered included life expectancy among people with and without intellectual disabilities, social and emotional development of people with intellectual disabilities and ASD, the influence of external environmental factors in determining aggressive behaviour in people with intellectual disabilities, parent and child training for children with autism and intellectual disabilities, how the presence of deafness influence the quality of life of people with intellectual disabilities, the views of prescribers on the deprescribing of antipsychotics among adults with intellectual disabilities, the views of people with intellectual disabilities who took part in the deprescribing, views of direct care workers on the causes of challenging behaviours in people with intellectual disabilities, and validation of tools to detect cognitive decline in adults with intellectual disabilities.
Barratt M, Jorgensen M, Deb SS, et al., 2023, Staff perceptions following a training programme about reducing psychotropic medication use in adults with intellectual disability: the need for a realistic professional practice framework, Journal of Applied Research in Intellectual Disabilities, Vol: 36, Pages: 486-496, ISSN: 1360-2322
BackgroundAdults with intellectual disability are at higher risk of being administered psychotropic medications. The UK-developed SPECTROM (Short-term PsychoEducation for Carers To Reduce Over Medication of people with intellectual disabilities) training programme educates disability support workers on psychotropic medications and alternatives to these medications.MethodInterviews were conducted with 10 participants who took part in the pilot SPECTROM training programme to elicit their views on the programme and its appropriateness in an Australian context.ResultsThe key theme was ‘Need for a psychotropic medication practice framework’. Four sub-themes were Broad satisfaction with the SPECTROM training programme; Disability support workers acknowledging the limitations of their scope of practice; Empowering training through prescriptive and reflective methods and; Need for future mentoring from Multi-Disciplinary Team members in the application of new knowledge.ConclusionsParticipants felt that whilst they could improve their knowledge and attitudes surrounding psychotropic medication administration for behaviours of concern through SPECTROM training, a national practice framework is needed to execute its goals at scale.
Deb SS, Limbu B, Nancarrow T, et al., 2023, The UK psychiatrists' experience of rationalising antipsychotics in adults with intellectual disabilities: a qualitative data analysis of free-text questionnaire responses, Journal of Applied Research in Intellectual Disabilities, Vol: 36, Pages: 594-603, ISSN: 1360-2322
BackgroundOverprescribing of off-licence psychotropic medications, particularly antipsychotics, for challenging behaviours in people with intellectual disabilities without a psychiatric disorder is a significant public health concern. In the United Kingdom, the National Health Service England launched an initiative in 2016, ‘STopping Over-Medication of People with learning disabilities, autism or both (STOMP)’, to address this concern. STOMP is supposed to encourage psychiatrists in the United Kingdom and elsewhere to rationalise psychotropic medication use in people with intellectual disabilities. The current study aims to gather UK psychiatrists' views and experience of implementing the STOMP initiative.MethodsAn online questionnaire was sent to all UK psychiatrists working in the field of intellectual disabilities (estimated 225). Two open-ended questions allowed participants to write comments in response to these questions in the free text boxes. One question asked about the challenges psychiatrists faced locally to implement STOMP, and the other asked for examples of successes and positive experiences from the process. The free text data were analysed using a qualitative method with the help of the NVivo 12 plus software.ResultsEighty-eight (estimated 39%) psychiatrists returned the completed questionnaire. The qualitative analysis of free-text data has shown variation within services in the experience and views of the psychiatrists. In areas with good support for STOMP implementation provided through adequate resources, psychiatrists reported satisfaction in the process with successful antipsychotic rationalisation, better local multi-disciplinary and multi-agency working, and increased awareness of STOMP issues among the stakeholders such as people with intellectual disabilities and their caregivers and multidisciplinary teams, and improved quality of life caused by reduced medication-related adverse events in people with intellectual disabilities
Deb SS, Limbu B, Unwin GL, et al., 2023, The use of medication for challenging behaviors in people with intellectual disabilities: the direct care providers’ perspective, Journal of Mental Health Research in Intellectual Disabilities, Vol: 16, Pages: 253-274, ISSN: 1931-5864
BackgroundOvermedication of people with intellectual disabilities, particularly when psychotropic medications are used for challenging behavior (CB) in the absence of a psychiatric disorder, is a significant public health concern. Support staff play a pivotal role in influencing the prescribing process. Staff views and attitudes toward medication use for CB are therefore of paramount importance.MethodWe have conducted four focus groups involving support staff (n = 8), home managers (n = 5) and trainers (n = 3), two of which primarily explored participants’ experiences and views on using medication for CB and medication withdrawal.ResultsSome participants felt medication use was justified, but others saw that as a form of chemical restraint. Most agreed that polypharmacy of psychotropics might lead to side effects. Some acknowledged the lack of shared decision-making involving people with intellectual disabilities and their families. There was universal anxiety about withdrawing the medication.ConclusionsAll agreed on the need for more medication-related information.
de Kuijper G, de Haan J, Deb S, et al., 2022, Withdrawing Antipsychotics for Challenging Behaviours in Adults with Intellectual Disabilities: Experiences and Views of Prescribers, International Journal of Environmental Research and Public Health, Vol: 19, Pages: 17095-17095
<jats:p>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.</jats:p>
de Kuijper G, de Haan J, Deb S, et al., 2022, Withdrawing Antipsychotics for Challenging Behaviours in Adults with Intellectual Disabilities: Experiences and Views of Experts by Experience, INTERNATIONAL JOURNAL OF ENVIRONMENTAL RESEARCH AND PUBLIC HEALTH, Vol: 19
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Wilson N, Barratt M, Jorgensen M, et al., 2022, Short-Term Psycho-Education for Caregivers to Reduce Overmedication of People with Intellectual Disabilities (SPECTROM): An Australian Feasibility Study., Short-Term Psycho-Education for Caregivers to Reduce Overmedication of People with Intellectual Disabilities (SPECTROM): An Australian Feasibility Study.
Limbu B, Deb S, 2022, Support staff liaising effectively with professionals for the rational use of psychotropics for behaviours that challenge in adults with intellectual disabilities: findings from a co-design event., Frontiers in Psychiatry, Vol: 13, Pages: 1-11, ISSN: 1664-0640
Experience Based Co-Design (EBCD) and co-production are interdisciplinary collaborative approaches to improve health care services by involving all stakeholders. These approaches capture the experiences of all stakeholders who come in contact with services and use experiences as evidence to promote and implement service changes. The use of psychotropic medications for behaviours that challenge (BtC) in people with intellectual disabilities (ID) is a complex issue because of its off-license use and use in combination with other medications for physical and psychiatric co-morbidities, which leads to overmedication of people with ID. As support staff play a pivotal role in the prescribing for people with ID, we have developed a staff training programme, SPECTROM, to help reduce overmedication. A project team developed SPECTROM under the guidance of a Programme Development Group (PDG) consisting of 21 stakeholders. The PDG analysed data from a literature review, four focus groups and a co-design event day involving 26 stakeholders. In this paper, we have presented data based on the findings from the co-design event day, primarily on the issue of support staff effectively liaising with professionals such as doctors, nurses and other community learning disability team members. In-depth information and recommendations were proposed at the co-design event, which helped develop the draft SPECTROM. The draft was finalised after receiving feedback from 56 stakeholders. Co-production and a modified EBCD can be successfully used to create training interventions and improve health care services. More research should utilise co-production and EBCD and use service users’ experiences to develop interventions and improve health care services.
Deb S, Limbu B, 2022, Support staff liaising effectively with family caregivers: findings from a co-design event and recommendation for a staff training source., Frontiers in Psychiatry, Vol: 13, Pages: 1-11, ISSN: 1664-0640
A high proportion of people with intellectual disabilities (ID) and autism spectrum disorder (ASD) are prescribed psychotropic medications such as antipsychotics, antidepressants etc., outside their licenced indications, primarily for the management of behaviours that challenge (BtC) in the absence of a psychiatric disorder. Examples of BtC are aggression to people and property or self-injury. BtC could be challenging to manage and may cause patient and caregivers distress, breakdown of community placement leading to hospitalisation, and restrictive practices such as restraint or inappropriate medication use. Caregivers play a pivotal role in the prescribing process. However, many family caregivers feel that they have not been fully involved in the shared decision-making process about the care planning of their relatives with ID/ASD. To address the public health concern regarding the overuse of off-licence prescribing in people with ID/ASD, we have recently developed a training programme called SPECTROM (Short-term Psycho-Education for Carers To Reduce OverMedication of people with intellectual disabilities) for direct care staff who support people with ID/ASD within community settings. We used co-production and a modified Experience-Based Co-Design method to develop SPECTROM, which involved a literature review, four focus groups and a co-design event day involving 26 stakeholders. Recommendations from the co-design event day were analysed by a Programme Development Group (PDG) consisting of 21 stakeholders who made the final recommendations to the project team regarding the contents and the format of SPECTROM, which was finalised after receiving feedback from further 56 stakeholders. SPECTROM has web-based resources introduced through two core modules in face-to-face workshops/training. A small field test found SPECTROM was effective in improving staff’s knowledge of psychotropic medications and attitude toward BtC and people with ID (p < 0.05). One of the
Deb SS, Limbu B, Unwin GL, et al., 2022, Causes of and alternatives to medication for behaviours that challenge in people with intellectual disabilities: direct care providers’ perspectives, International Journal of Environmental Research and Public Health, Vol: 19, Pages: 1-14, ISSN: 1660-4601
Behaviours that challenge (BtC), such as aggression and self-injury, are manifested by many people with intellectual disabilities (ID). National and international guidelines recommend non-pharmacological psychosocial intervention before considering medication to address BtC. Support staff play a pivotal role in the prescription process. Using coproduction, we developed a training programme for support staff, called SPECTROM, to give them knowledge and empower them to question inappropriate prescriptions and ask for the discontinuation of medication if appropriate and instead look for ways to help people with ID when they are distressed without relying on medication. We have presented data from two focus groups that we conducted during the development of SPECTROM: one that included support staff, and another that had service managers and trainers. In these focus groups, we explored participants’ views on the use of medication to address BtC with a particular emphasis on the causes of and alternatives to medication for BtC. Along with the participants’ views, we have also presented how we have addressed these issues in the SPECTROM resources.
Deb S, Roy M, Limbu B, 2022, Antidepressants., Handbook of Autism and Pervasive Developmental Disorder., Editors: Matson, Sturmey, Publisher: Springer Nature Switzerland AG, Pages: 1139-1156
Depressive symptoms are common co-morbidities of Autism Spectrum Disorder (ASD). However, studies of antidepressants haveprimarily assessed their efficacy on ASD core symptoms, particularly repetitive behaviour rather than depression possibly because ofselective serotonin reuptake inhibitors (SSRI) known for their positive effect on the treatment of repetitive behaviour and obsessive compulsive behaviour. Other outcomes have included associated symptoms such as irritability, aggression and other problembehaviours. Most publications are case studies. There were only three randomized controlled trials (RCTs) involving tricyclicantidepressants (two on clomipramine and one on tianeptine) showing an equivocal result and were associated with a high rate ofadverse events. Most placebo controlled RCTs were on SSRIs (13 studies), findings of which are equivocal, some showing somepositive effect and others showing no effect, and some showing more medication related adverse events. Of the three larger studieswith reasonable sample size (over 100 participants), two showed a negative outcome and one showed mixed results. Studies haveinvolved children, adolescents, and adults with ASD. On the basis of the evidence available currently it is difficult to draw anydefinitive conclusion about the effectiveness of antidepressant medications in people with ASD either on the ASD core symptoms orany associated behaviours or symptoms. Therefore, the clinicians must assess possible harm against potential benefit in each casewhen considering using antidepressants in people with ASD.
Deb S, Roy M, Limbu B, et al., 2022, Anti-anxiety medications and novel treatments for autism., Handbook of Autism and Pervasive Developmental Disorder., Editors: Matson, Sturmey, Publisher: Springer Nature Switzerland AG, Pages: 1157-1172
Anxiety symptoms are common in autism spectrum disorder (ASD). Most studies of antianxiety medications are on buspirone andbeta-blockers. The outcomes included ASD core symptoms, repetitive behaviour, irritability, anxiety, and other associated behaviorssuch as challenging behaviors. Most publications are only case studies. There are only two RCTs on buspirone (both used paralleldesigns) and none on beta-blockers. One study on buspirone included 166 children with ASD and showed no statistically significantintergroup difference in the primary outcome ADOS composite total score. The second one involved 40 children with ASD andfound buspirone significantly reduced irritability symptoms. Benzodiazepines are not recommended for use in people with ASDbecause of adverse events related to their use and withdrawal, apart from high dose lorazepam, which is recommended for thetreatment of catatonia which could be a co-morbidity in some people with ASD. Studies have involved children, adolescents, andadults with ASD. Based on the evidence available currently it is difficult to draw any definitive conclusion about the effectiveness ofantianxiety medications in people with ASD either on the ASD core symptoms or any associated behaviors/symptoms. Several novelpharmacological interventions have been tried on experimental basis to improve ASD core symptoms primarily targeted atcholinergic, glutamate/NMDA, GABA, melatonin systems, and oxytocin and vasopressin. Despite promising results from animalstudies, the findings so far from human studies remain equivocal and inconsistent, and none of these compounds have shown anyconvincing evidence in their support yet for use in people with ASD.
Bertelli M, Deb S, Bianco A, 2022, Rational prescription of psychotropic medications., Handbook of Autism and Pervasive Developmental Disorder., Editors: Matson, Sturmey, Publisher: Springer Nature Switzerland AG., Pages: 1121-1138
Psychotropic medications, such as antipsychotics, antidepressants, mood stabiliser, anti-anxiety/benzodiazepines etc., are used frequently in people with autism spectrum disorder (ASD). They are used for ASD core symptoms; associated symptoms, such as sleep disorders; co-morbid psychiatric disorders; and, problem behaviors. Whereas the indication for their use for various psychiatric disorders is relatively clear, the rationale for their use for problem behavior in the absence of a diagnosed psychiatric disorder is less clear because of poor evidence base to support their use in these circumstances. National and international good practice guidelines recommend non-pharmacological interventions for problem behavior as the first line of intervention although the use of psychotropic medication may be justified when the risk to the person or others is very high or only for a short period of time at a minimum possible dose as long as regular reviews are conducted with the view to withdrawing them as soon as possible. Medication-related adverse effects may be more pronounced in this population and the risk of drug–drug interaction is high because of use of polypharmacy of psychotropic medications and frequent use of medication for physical disorders. It is also difficult to detect adverse effects because of communication difficulties experienced by people with ASD. The lack of capacity to give informed consent for the treatment also raises ethical issues. Where possible reasonable adjustments, such as use of accessible information, should be used to help with the consent process. Both family and paid caregivers should discuss the treatment options with other involved professionals keeping the best interests of the person in mind.
Deb S, Bertelli M, Rossi M, 2022, Psychopharmacology, Textbook of Psychiatry for Intellectual Disability and Autism Spectrum Disorder., Editors: Bertelli, Deb, Munir, Hassiotis, Salvador-Carulla, Publisher: Springer Nature Switzerland AG 2022, Pages: 247-279, ISBN: 978-3-319-95719-7
Psychotropic medications are used regularly off-label for the management of problem behaviour in individuals with intellectual disabilities (ID) in the absence of a diagnosed psychiatric disorder. This practice is controversial. Evidence for the efficacy of psychotropic medication in this context is poor. Three RCTs involving risperidone among adults with ID showed equivocal results. Six RCTs involving children with ID +/- autism showed risperidone being significantly more effective compared with the placebo. In two pharmaceutical company run studies, aripiprazole was shown to be significantly effective compared with placebo in children with ASD, some of whom also had ID. Equivocal results are found based on primarily cross-over RCTs on the opioid antagonist. Old small studies of lithium showed equivocal results. It is, therefore, suggested that the use of psychotropic medication in this context should be monitored carefully and regularly using national and international guides.
Deb S, Unwin G, Cooper S-A, et al., 2022, Problem Behaviour, Textbook of Psychiatry for Intellectual Disability and Autism Spectrum Disorder., Editors: Bertelli, Deb, Munir, Hassiotis, Salvador-Carulla, Publisher: Springer Nature Switzerland AG 2022, Pages: 145-185, ISBN: 978-3-319-95719-7
Individuals with intellectual disabilities (ID) are at a higher risk of developing problem behaviour (PB). The prevalence varies from study to study depending on the definition of PB used and the population recruited. Although prevalence rates vary widely between 2% and 60%, the majority of studies quoted a prevalence rate of overall PB somewhere around in 60% of people but the more severe challenging behaviour is reported in a smaller proportion of people (around 10%-15%). Outwardly directed aggression (about 10%) to other individuals and objects and self-injurious behaviour are the commonest forms of PB. PB in general and aggression, in particular, poses a major management problem and is a major barrier to social integration, leads to caregiver stress, community placement breakdown and use of the restrictive practice. Various factors such as age, gender, level of ID, level of communication, co-morbidities such as psychiatric disorder, other neurodevelopmental disorders such as autism spectrum disorder (ASD) and attention deficit hyperactivity disorder (ADHD) etc. may influence the rate and the severity of PB. A thorough person-centred assessment is vital for a successful management. The assessment should take a bio-psycho-social approach by incorporating assessments of the behaviour, the person showing the behaviour, medical, psychiatric/psychological, and social/environmental issues. A number of instruments are available to rate different types of PB and assess their impact. Some of these are generic and some are specific to PB. Some functional assessment scales that assess the environmental effect are also available. The aetiology of PB is complex and often is the outcome of an interaction between internal factors within the person and external factors such as the environment. Therefore, the management of PB requires input from a multitude of professionals with relevant and specific skills. The ultimate aim should be to improve the quality of life of the person
Deb S, Strydom A, Hithersay R, et al., 2022, Dementia in People with Intellectual Disabilities, Textbook of Psychiatry for Intellectual Disability and Autism Spectrum Disorder., Editors: Bertelli, Deb, Munir, Hassiotis, Salvador-Carulla, Publisher: Springer Nature Switzerland AG 2022, Pages: 719-756, ISBN: 978-3-319-95719-7
With the increasing life expectancy in the last five decades, people with intellectual disabilities (ID) are exposed to the risk of age-related neurodegenerative disorders including dementia. The prevalence of dementia is increased in people with ID compared with that in the general population. People with Down syndrome (DS) are even at a higher risk of developing Alzheimer’s dementia (AD) compared with non-DS people with ID. However, there are difficulties in making an early and accurate diagnosis of dementia in individuals with ID and the screening instruments such as the Mini Mental Status Examination that are used in the general population often show floor effects when used for individuals with ID because of their pre-existing cognitive impairment, the level of which varies depending on the severity of ID. Both informant-rated and direct neuropsychological tests have been used for the case detection of dementia for individuals with ID. However, direct neuropsychological tests cannot be used for those who have severe ID and their validity could still be questionable in a number of cases of mild to moderate ID. There are many similarities and some differences in the clinical manifestation of dementia in individuals with ID and the non-ID general population. Impaired recent memory and confusion in the context of relatively intact distant memory is likely to be an early symptom in individuals with ID who have a mild ID, whereas loss of skills and behaviour changes are likely to be an early feature for those with more severe ID. Many symptoms, including features of ‘frontal lobe dysfunction’ that tend to appear late in the dementing process in the general population, may appear early in individuals with ID and DS. Ideally, individuals with ID should be screened for signs of dementia from before the age of 30/35. A multi-disciplinary approach should be taken for diagnosis of dementia in individuals with ID using a combination of informant-rated scal
Deb S, Perera B, Bertelli M, 2022, Attention Defcit Hyperactivity Disorder, Textbook of Psychiatry for Intellectual Disability and Autism Spectrum Disorder, Editors: Bertelli, Deb, Munir, Hassiotis, Salvador-Carulla, Publisher: Springer Nature Switzerland AG 2022, Pages: 457-482, ISBN: 978-3-319-95719-7
Attention deficit hyperactivity disorder (ADHD) is characterised by inattention or hyperactivity/ impulsivity or both. The onset of ADHD is in childhood but in a proportion of cases, some symptoms continue into adulthood. There is a strong association between ADHD, intellectual disabilities (ID), problem behaviour and autism spectrum disorder (ASD). In fact, the prevalence rate of ADHD in people persons with ID and ASD respectively is reported to be significantly higher than the general population, with a percentage ranging between e of 10% and-28%. It might be difficult to diagnose ADHD in persons with ID and low-functioning ASD. The stringent use of categorical diagnostic criteria might limit the identification of the disorder since some criteria may not be applicable, particularly for those with more severe cognitive and communication impairments. Observation of a person’s distractibility that is not consistent with their developmental level of development may help when considering the symptom of inattention in an individual with ID, while hyperactivity and impulsivity are better indicated by fidgeting most of the time, appearing ‘on the go’, and being unable to remain seated for a long time and to wait for one’s turn, which can often lead to verbal or physical aggression, irritability, mood fluctuations, or self-harming behaviour.Although ADHD in the non-ID population is a widely researched area, the lack of high-quality research on ADHD in ID has been a barrier to the advancement of treatment in this patient group, with most studies having named ID as an exclusion criterion. Drug treatment such as psychostimulants like methylphenidate along with psychosocial interventions is effective in a high proportion of cases to improve ADHD symptoms. Although the overall effect size of psychostimulant is lower than that observed in the non-ID general population despite the adverse effect profile being similar in both populations.
Deb S, Roy M, 2022, Behavioural and Emotional Disorders with Onset Usually Occurring in Childhood and Adolescence, Textbook of Psychiatry for Intellectual Disability and Autism Spectrum Disorder, Editors: Bertelli, Deb, Munir, Hassiotis, Salvador-Carulla, Publisher: Springer Nature Switzerland AG 2022, Pages: 513-535, ISBN: 978-3-319-95719-7
Disruptive, impulse-control, and conduct disorders is a new category under DSM-V classification system. These disorders originate in childhood and often continue into adulthood. There is a strong association between these disorders and intellectual disabilities (ID). They include conduct disorder, oppositional defiant disorder which is a less severe form of conduct disorder, and intermittent explosive disorder, which was part of impulse control disorder in pervious DSM classifications. However, by definition many of these disorders have to show an intention behind the behaviour, which is not easy to determine, particularly among those who have severe and profound ID. Other impulse control disorders include pyromania, kleptomania, gambling disorder, compulsive sexual behaviour disorder, trichotillomania and excoriation disorder. Body focussed repetitive behaviour, on the other hand, includes stereotyped movement disorder and self-injurious behaviour. The aetiology of these disorders is complex and often is the outcome of an interaction between internal factors within the person and external factors such as the environment. Management of these behaviours is often difficult, therefore, requires input from a multitude of professionals with relevant and specific skills to provide a person-centred assessment and management. The ultimate aim should be to improve the quality of life of the person with ID and their family members.
, 2022, Textbook of Psychiatry for Intellectual Disability and Autism Spectrum Disorder., Publisher: Springer Nature Switzerland AG 2022, ISBN: 978-3-319-95719-7
This textbook provides a state of the art of the knowledge on the prevalence, risk and etiological factors, clinical features, assessment procedures and tools, diagnostic criteria, treatment, and prognosis of the psychiatric disorders encountered in people with intellectual disability (ID) and low-functioning autism spectrum disorder (ASD). ID and ASD represent two meta-syndromic groups of several different conditions, each with particular cognitive and communication features. People with ID/ASD display an increased prevalence of a variety of psychiatric disorders, including psychotic disorders, mood disorders, anxiety and stress-related disorders, somatoform disorders, obsessive-compulsive disorder, as well behavioural syndromes, personality disorders, and disorders due to psychoactive substance use. This book will enable readers to understand the specificities of psychiatric disorders in the context of ID/ASD. It explains clearly how diagnostic criteria and assessment procedures for psychiatric disorders that were created for the general population have to be modified for use with ID/ASD. Above all, it will enable clinicians to overcome difficulties in diagnosis and deliver more effective care that meets the particular needs of patients with ID/ASD.
, 2022, Textbook of Psychiatry for Intellectual Disability and Autism Spectrum Disorder, Publisher: Springer Nature Switzerland AG 2022, ISBN: 978-3-319-95719-7
This textbook provides a state of the art of the knowledge on the prevalence, risk and etiological factors, clinical features, assessment procedures and tools, diagnostic criteria, treatment, and prognosis of the psychiatric disorders encountered in people with intellectual disability (ID) and low-functioning autism spectrum disorder (ASD). ID and ASD represent two meta-syndromic groups of several different conditions, each with particular cognitive and communication features. People with ID/ASD display an increased prevalence of a variety of psychiatric disorders, including psychotic disorders, mood disorders, anxiety and stress-related disorders, somatoform disorders, and obsessive-compulsive disorder, as well behavioral syndromes, personality disorders, and disorders due to psychoactive substance use. This book will enable readers to understand the specificities of psychiatric disorders in the context of ID/ASD. It explains clearly how diagnostic criteria and assessment procedures for psychiatric disorders that were created for the general population have to be modified for use with ID/ASD. Above all, it will enable clinicians to overcome difficulties in diagnosis and to deliver more effective care that meets the particular needs of patients with ID/ASD.
Weber G, Bertelli M, Deb S, et al., 2022, Education and training opportunities, Textbook of Psychiatry for Intellectual Disability and Autism Spectrum Disorder, Editors: Bertelli, Deb, Munir, Hassiotis, Salvador-Carulla, Pages: 869-886-869-886, ISBN: 978-3-319-95719-7
This chapter reviews the educational and training opportunities on mental health and intellectual disabilities (ID). The lack of well-trained professionals in ID mental health, such as psychiatrists and clinical psychologists, is highlighted in the background of recent service development and advancement in knowledge in the field. The chapter reveals major disparities in training of professionals in mental health issues in ID both within and among countries, particularly in Europe. Formal accredited training schemes, where available as well as online resources for self-learning have been described in the chapter. We point out the role and responsibility of national governments in strengthening effective leadership and governance for mental health policy and take the necessary steps to assure a high-quality mental health system, including ID mental health. Stakeholders from the ID mental health field are encouraged to set up a pan-European or international collaboration to coordinate the development of a shared generic framework for curriculum for education and training for professionals and carers in the ID mental health field.
Deb S, Roy M, 2022, Behavioural and emotional disorders with onset usually occurring in childhood and adolescence, Textbook of Psychiatry for Intellectual Disability and Autism Spectrum Disorder, Editors: Bertelli, Deb, Munir, Hassiotis, Salvador-Carulla, Publisher: Springer Nature Switzerland AG 2022, Pages: 513-536, ISBN: 978-3-319-95719-7
Disruptive, impulse-control, and conduct disorders is a new category under DSM-V classification system. These disorders originate in childhood and often continue into adulthood. There is a strong association between these disorders and intellectual disabilities (ID). They include conduct disorder, oppositional defiant disorder which is a less severe form of conduct disorder, and intermittent explosive disorder, which was part of impulse control disorder in pervious DSM classifications. However, by definition many of these disorders have to show an intention behind the behaviour, which is not easy to determine, particularly among those who have severe and profound ID. Other impulse control disorders include pyromania, kleptomania, gambling disorder, compulsive sexual behaviour disorder, trichotillomania and excoriation disorder. Body focussed repetitive behaviour, on the other hand, includes stereotyped movement disorder and self-injurious behaviour. The aetiology of these disorders is complex and often is the outcome of an interaction between internal factors within the person and external factors such as the environment. Management of these behaviours is often difficult, therefore, requires input from a multitude of professionals with relevant and specific skills to provide a person-centred assessment and management. The ultimate aim should be to improve the quality of life of the person with ID and their family members.
Deb S, Roy M, Bachman C, et al., 2022, Specific learning disorders, motor disorders, and communication disorders, 'Textbook of Psychiatry for Intellectual Disability and Autism Spectrum Disorder, Editors: Bertelli, Deb, Munir, Hassiotis, Salvador-Carulla, Publisher: Springer Nature Switzerland AG 2022, Pages: 513-536, ISBN: 978-3-319-95719-7
Specific Learning Disorders (SLDs) occur early during the first years of formal schooling, with difficulty in learning, reading, writing and arithmetic. They occur in the absence of a global impairment of intelligence and intellectual capability, although these disorders are prevalent among children and adults with intellectual disabilities (ID). These disorders originate in childhood and often continue into adulthood among many. Various treatments are available showing varied rate of success for SLDs. Attention deficit hyperactivity disorder (ADHD) is characterised by inattention or hyperactivity/ impulsivity or both. The onset of ADHD is in childhood but in a proportion of cases some symptoms continue into adulthood. There is a strong association among ADHD, ID, problem behaviour and autism spectrum disorder (ASD). Drug treatment such as with psychostimulants like methylphenidate along with psychosocial intervention are effective in a high proportion of cases to improve ADHD symptoms. Motor disorders such as motor coordination difficulties, Tic and Tourette’s syndrome are common in children and adults with ID. Children and adults with ID manifest various types of communication disorders including speech sound disorder, speech fluency disorder (stuttering) and social (pragmatic) communication disorder. Social communication disorder is common among children and adults with ASD. Various strategies could be implemented to address communication disorders among people with ID.
Deb S, Akrout Brizard B, Limbu B, et al., 2022, Is epilepsy a risk factor for developing psychiatric disorders in adults with intellectual disabilities? A systematic review and meta-analysis., Royal College of Psychiatrists conference, London, UK.
Background Psychiatric disorders such as depression and anxiety are commonly associated with epilepsy in the general population but the relationship between psychiatric disorders and epilepsy among adults with intellectual disabilities is unclear. AimsA systematic review and meta-analysis were carried out to assess whether epilepsy is associated with an increased rate of psychiatric disorders in adults with intellectual disabilities. MethodRelevant literature published between 1985 and 2020, using EMBASE, PsycINFO, PubMed and DARE databases were included and six relevant journals in the fields of intellectual disabilities and epilepsy were hand searched. The Cochrane Risk of Bias assessment tool and Scottish Intercollegiate Guideline Network (SIGN) 50 criteria were used to assess the quality of the included papers. A number of meta-analyses were also carried out.Results Twenty-nine papers were included in our systematic review that presented data overall on 9,594 adults with intellectual disabilities, 3,180 of whom had epilepsy and 6,414 did not. Of the 11 controlled studies that compared the overall rate of psychiatric disorders between epilepsy and the non-epilepsy group, seven did not show any significant intergroup difference. Meta-analysis was possible on pooled data from seven controlled studies which did not show any significant intergroup difference in the overall rate of psychiatric disorders. The rates of psychotic disorders, depressive disorders and anxiety disorders were significantly higher in the non-epilepsy control groups compared with the epilepsy group with effect sizes of 0.29, 0.47, 0.58 respectively. Epilepsy related factors such as the types of epilepsy syndrome and seizure, frequency, EEG abnormalities, medication related factors such as polypharmacy or antiepileptic types did not show any definite association with psychiatric disorders.Conclusions It is difficult to pool data from such heterogeneous studies and draw any definitive conclusion
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