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Annals of Medicine Dec 2022Psychotropic medications are commonly prescribed among adults with intellectual disability, often in the absence of a psychiatric diagnosis. The aim of this scoping...
BACKGROUND/OBJECTIVE(S)
Psychotropic medications are commonly prescribed among adults with intellectual disability, often in the absence of a psychiatric diagnosis. The aim of this scoping review is to provide an overview of the extent, range, and nature of the available research on medication use and practices and medication management in people with intellectual disability taking psychotropic medications for behaviours that challenge.
MATERIALS AND METHODS
A scoping review of research studies (qualitative, quantitative, and mixed design) and Grey Literature (English) was carried out. Databases included: Ovid MEDLINE, Embase, CINAHL, JBI Evidence Synthesis, Cochrane Central Register of Controlled Trials, Cochrane Database of Systematic Reviews, PsycINFO, and Scopus. A three-step search strategy was followed, with results screened by two independent reviewers. Data was extracted independently by two reviewers using a data extraction tool with results mapped and presented using a narrative form supported by tables and diagrams to the research questions.
RESULTS
Following the removal of duplicates, records were screened, full texts assessed, and 49 studies were included. Medication outcomes included reduced repetitive, stereotypic, and/or aggressive behaviours. High dosing/prescribing in the setting of an absent/unclear clinical indication was associated with worsening of symptoms for which psychotropics were prescribed. While psychotropics had a role in managing behaviours that challenge, reducing or discontinuing psychotropics is sometimes warranted. Study designs were frequently pragmatic resulting in small sample sizes and heterogeneous cohorts receiving different doses and combinations of medications. Access to multidisciplinary teams, guidelines, medication reviews, staff training, and enhanced roles for carers in decision-making were warranted to optimize psychotropic use.
CONCLUSIONS
These findings can inform prescribing interventions and highlight the need for timely and comprehensive patient outcome data, especially on long-term use of high doses of psychotropics and what happens when reduce or stop prescribing these doses.KEY MESSAGESPsychotropic medications are frequently prescribed for people with intellectual disabilities, often at high doses and these medications are associated with both positive and negative patient outcomes.Work to rationalize psychotropic use has been reported with interventions aiming to reduce polypharmacy or deprescribe a single psychotropic medicine. These interventions had mixed success and risk of relapse was documented in some studies.Limitations in sample size and heterogenous patient cohorts make it challenging to understand the risks and benefits associated with reducing or stopping psychotropic medicines.Patient, carer, and clinician partnerships are critical to advance medication management.
Topics: Adult; Databases, Factual; Humans; Intellectual Disability; Polypharmacy; Psychotropic Drugs; Systematic Reviews as Topic
PubMed: 36120887
DOI: 10.1080/07853890.2022.2121853 -
International Journal of Psychiatry in... Mar 2017Background Subjects with intellectual disability are at increased risk of having comorbid psychiatric disorders and worse response to psychotherapeutic and... (Review)
Review
Background Subjects with intellectual disability are at increased risk of having comorbid psychiatric disorders and worse response to psychotherapeutic and psychopharmacological treatment interventions. On the other hand, available data on best treatment approach in this population are scarce and lack scientific evidence due to methodological limitations. The present study aims to perform a systematic review of the literature to facilitate the use of psychotropic drugs in clinical practice and better establish future research targets in this field. Objectives To review the available psychopharmacological strategies for patients with intellectual disabilities, psychiatric disorders, and behavioural disturbances. Serve as a quick guide for clinicians working in the field of intellectual disability. Methods We conducted a selective evidence-based review of the literature using Pubmed and EMBASE databases and selected most recent and relevant papers for this review. Results There are several available psychotropic drugs for the treatment of patients with intellectual disability and comorbid psychiatric disorders, although scientific evidence is limited. Treatment should be individualized according to risk-benefit balance. Discussion Further studies are needed and new available drugs should be considered to gain knowledge in effectiveness of different therapeutic approaches available in this population.
Topics: Adult; Humans; Intellectual Disability; Mental Disorders; Psychotropic Drugs
PubMed: 28792289
DOI: 10.1177/0091217417720896 -
Journal of Applied Research in... Sep 2020People with intellectual disability experience a higher prevalence of dementia, at an earlier age, than the general population. The aim of this review was to establish... (Review)
Review
BACKGROUND
People with intellectual disability experience a higher prevalence of dementia, at an earlier age, than the general population. The aim of this review was to establish the psychological interventions and outcomes for individuals with intellectual disability and dementia.
METHODS
A search of eight electronic databases and reference lists of all included articles was conducted using PRISMA guidelines. Data were synthesized using an integrative method.
RESULTS
Initial searching produced 2,331 papers. Twenty-one studies met the inclusion criteria. Interventions were deductively categorized into behavioural, systemic and therapeutic. All studies reported positive findings for individuals and for the systems which support them, but limited by methodological issues and neglect of the direct experience and impact on individuals themselves.
CONCLUSIONS
The findings are discussed in relation to the wider literature and evidence base. Future research should aim to adopt methodologically robust designs that are inclusive of the individual experience of people with intellectual disability.
Topics: Dementia; Humans; Intellectual Disability; Prevalence; Psychosocial Intervention
PubMed: 32107821
DOI: 10.1111/jar.12722 -
Journal of Applied Research in... Sep 2016The diagnosis of depression in severe and profound intellectual disability is challenging. Without adequate skills in verbal self-expression, standardized diagnostic... (Review)
Review
BACKGROUND
The diagnosis of depression in severe and profound intellectual disability is challenging. Without adequate skills in verbal self-expression, standardized diagnostic criteria cannot be used with confidence. The purpose of this systematic review was to investigate the assessment and diagnosis of unipolar depression in severe and profound intellectual disability. The review aimed to examine the methods used to assess for depression. The secondary aim was to explore the frequency and symptoms of depression.
METHODS
The PRISMA (2009) Checklist for systematic review was followed, and a search of electronic databases was undertaken. Nine studies were included in the qualitative synthesis from over 2000 records identified.
RESULTS
The quality of the studies was assessed and scored, with a wide range of results. Individual studies scored between 2 and 7 of a maximum possible score of 8. The diagnostic tools utilized by each of the studies were assessed and compared.
CONCLUSIONS
In terms of the methods used to assess for depression, results were varied. This was due to the heterogeneous nature of the individual study designs. The Aberrant Behaviour Checklist consistently showed promise, in particular when combined with other instruments or clinical examination. Qualitative analysis of the selected studies has shown a wide variation in the quality of primary research in this field, with more required to make firm conclusions regarding the diagnosis, frequency and presentation of depression in severe and profound intellectual disability.
Topics: Comorbidity; Depressive Disorder, Major; Humans; Intellectual Disability
PubMed: 26101049
DOI: 10.1111/jar.12203 -
Human Genetics Dec 2021ATR-X, an acronym for alpha thalassemia and mental retardation X-linked, syndrome is a congenital condition predominantly affecting males, characterized by mild to...
ATR-X, an acronym for alpha thalassemia and mental retardation X-linked, syndrome is a congenital condition predominantly affecting males, characterized by mild to severe intellectual disability, facial, skeletal, urogenital, and hematopoietic anomalies. Less common are heart defects, eye anomalies, renal abnormalities, and gastrointestinal dysfunction. ATR-X syndrome is caused by germline variants in the ATRX gene. Until recently, the diagnosis of the ATR-X syndrome had been guided by the classical clinical manifestations and confirmed by molecular techniques. However, our new systematic analysis shows that the only clinical sign shared by all affected individuals is intellectual disability, with the other manifestations varying even within the same family. More than 190 different germline ATRX mutations in some 200 patients have been analyzed. With improved and more frequent analysis by molecular technologies, more subtle deletions and insertions have been detected recently. Moreover, emerging technologies reveal non-classic phenotypes of ATR-X syndrome as well as the description of a new clinical feature, the development of osteosarcoma which suggests an increased cancer risk in ATR-X syndrome. This review will focus on the different types of inherited ATRX mutations and their relation to clinical features in the ATR-X syndrome. We will provide an update of the frequency of clinical manifestations, the affected organs, and the genotype-phenotype correlations. Finally, we propose a shift in the diagnosis of ATR-X patients, from a clinical diagnosis to a molecular-based approach. This may assist clinicians in patient management, risk assessment and genetic counseling.
Topics: Animals; Humans; Intellectual Disability; Mental Retardation, X-Linked; Molecular Diagnostic Techniques; Mutation; alpha-Thalassemia
PubMed: 34524523
DOI: 10.1007/s00439-021-02361-5 -
Journal of Intellectual Disability... May 2021Children and adolescents with intellectual disabilities (ID) participate in low levels of physical activity. To inform the development of interventions, we need to... (Review)
Review
BACKGROUND
Children and adolescents with intellectual disabilities (ID) participate in low levels of physical activity. To inform the development of interventions, we need to better understand factors associated with physical activity. The aim of this study was therefore to systematically review correlates of physical activity in children and adolescents with ID.
METHODS
The review was conducted in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. Ovid MEDLINE, Ovid Embase, Web of Science, ERIC, CINAHL and PsycINFO were searched between 1 January 1990 and 29 February 2020 to identify English-language studies, which examined correlates of free-living physical activity in children and adolescents (0-19 years) with ID. Study quality was assessed. Correlates were analysed using a narrative synthesis and classified using the socioecological model as intrapersonal, interpersonal, organisational or environmental.
RESULTS
Fifteen studies published between 2010 and 2019 met the inclusion criteria and were included in the review. Forty-eight individual correlates were identified. Studies were predominantly focused on intrapersonal-level correlates. Of those correlates investigated in more than one study (n = 6), having better motor development was positively associated with physical activity. Inconsistent results were found for age and cardiorespiratory fitness. Sex, percentage body fat and body mass index were not correlated. No interpersonal-level, organisational-level or environmental-level correlates were included in more than one study.
CONCLUSIONS
To date, we have limited and inconclusive evidence about correlates of physical activity in children and adolescents with ID. Only when future studies unravel correlates and determinants, across all domains of the socioecological model, will the potential opportunities to improve health by increasing physical activity levels be achievable.
Topics: Adolescent; Body Mass Index; Cardiorespiratory Fitness; Child; Exercise; Humans; Intellectual Disability
PubMed: 33590605
DOI: 10.1111/jir.12811 -
Research in Developmental Disabilities Jul 2022Children and adolescents with intellectual disabilities (C&A-ID) face many disadvantages in healthcare research and service delivery. Intellectual disabilities have been... (Review)
Review
BACKGROUND
Children and adolescents with intellectual disabilities (C&A-ID) face many disadvantages in healthcare research and service delivery. Intellectual disabilities have been found to precipitate weight-related problems, and together, they may be indicators of rare genetic diseases (RGDs). C&A-ID may require support for health problems exacerbated by primary diagnoses. While it is generally agreed that C&A-ID have more complex needs than typically developing individuals, psychological services to address these needs are under-explored.
AIMS
This systematic review aimed to identify psychological interventions for weight management in C&A-ID.
METHOD
MEDLINE, PsycINFO, CINAHL, The Cochrane Library and SCOPUS were systematically searched. Data extraction and quality appraisal were performed for all eligible studies RESULTS: The search strategy yielded seven studies published in English between 2010 and 2022. All interventions addressed obesity through multi-disciplinary programmes and resulted in weight reductions, with most interventions theoretically influenced by principles of behaviourism. Quality appraisal revealed methodological weaknesses in six of seven studies, such as heterogeneity in samples, interventions, and outcome measures, disallowing meta-analyses and weakening the generalisability of interventions to diverse contexts and groups CONCLUSIONS AND IMPLICATIONS: A genuine disconnect between empirical evidence and services for C&A with complex needs was observed. This emphasises an urgency for increased inclusion in clinical and behavioural research and for robust enquiries to test/adapt psychological interventions for weight management for C&A-ID. The findings of this review hold clinical utility for clinicians working with C&A-ID, and with RGDs such as Bardet-Biedl, Prader-Willi and Down syndromes. Recommendations and a conceptual framework are provided herein for enhanced efficacy of interventions.
Topics: Adolescent; Child; Humans; Intellectual Disability; Obesity; Psychosocial Intervention
PubMed: 35500443
DOI: 10.1016/j.ridd.2022.104240 -
Journal of Applied Research in... May 2022Women with intellectual and developmental disabilities face poorer reproductive and pregnancy outcomes partially due to health care inequity. Our objective was to... (Review)
Review
BACKGROUND
Women with intellectual and developmental disabilities face poorer reproductive and pregnancy outcomes partially due to health care inequity. Our objective was to conduct a scoping review of reproductive and pregnancy related health care among women with intellectual and developmental disabilities.
METHODS
We systematically reviewed three databases for keywords pertaining to pregnancy, reproductive health, and intellectual and developmental disabilities. Two reviewers screened abstracts and extracted full text. We synthesised included papers, identifying common themes.
RESULTS
Thirty-six papers met review criteria. Women with intellectual and developmental disabilities had lower fertility rates and were less likely to receive adequate sexual education compared to peers. While most women received prenatal care, uptake was lower and received later than women without intellectual and developmental disabilities.
CONCLUSIONS
Pregnancy-related health care is often lacking for women with intellectual and developmental disabilities. There are gaps inhibiting our understanding which prevents action to reduce health disparities.
Topics: Child; Delivery of Health Care; Developmental Disabilities; Female; Humans; Intellectual Disability; Male; Pregnancy; Prenatal Care; Sexual Behavior
PubMed: 35064736
DOI: 10.1111/jar.12977 -
Journal of Intellectual Disability... Jan 2023Girls/women with autism spectrum disorder (ASD) are suggested to exhibit different symptom profiles than boys/men with ASD. Accumulating evidence suggests that... (Meta-Analysis)
Meta-Analysis Review
BACKGROUND
Girls/women with autism spectrum disorder (ASD) are suggested to exhibit different symptom profiles than boys/men with ASD. Accumulating evidence suggests that intellectual disability (ID) may affect sex/gender differences in ASD. However, a systematic review and meta-analysis on this topic is missing.
METHODS
Two databases (MEDLINE and PsycINFO) were used to search for studies reporting sex/gender differences (girls/women versus boys/men) in social communication and interaction, restrictive and repetitive behaviour and interests (RRBIs), sensory processing, and linguistic and motor abilities in ASD. The final sample consisted of 79 studies. The meta-analysis was performed with Review Manager using a random-effects model. Participants with ASD without and with ID were analysed as separate subgroups, and the effects in these two subgroups were also compared with each other.
RESULTS
Girls/women with ASD without ID displayed fewer RRBIs, more sensory symptoms and less problems in linguistic abilities than their boys/men counterparts. In contrast, girls/women with ASD with ID displayed more social difficulties and RRBIs, poorer linguistic abilities and more motor problems than boys/men with ASD with ID. Comparisons of groups of participants with ASD without ID versus participants with ASD with ID confirmed differences in sex/gender effects on social difficulties, sensory processing, linguistic abilities and motor abilities.
CONCLUSIONS
Our results clearly suggest that the female phenotype of ASD is moderated by ID. Among individuals with ASD with ID, girls/women seem to be more severely affected than boys/men, whereas among individuals with ASD without ID, girls/women with ASD may have less symptoms than boys/men. Such phenotypic differences could be a potential cause of underrecognition of girls/women with ASD, and it is also possible that observed phenotypic differences may reflect underdiagnosing of girls/women with ASD.
Topics: Female; Humans; Autism Spectrum Disorder; Intellectual Disability; Sex Factors; Communication; Cognition
PubMed: 36444668
DOI: 10.1111/jir.12989 -
Journal of Intellectual Disability... Jul 2022Little is known about how to evaluate relationships and sex education (RSE) delivered to students with intellectual disability and what stakeholders perceive are... (Review)
Review
BACKGROUND
Little is known about how to evaluate relationships and sex education (RSE) delivered to students with intellectual disability and what stakeholders perceive are important outcomes. The present study aimed to systematically review existing studies on outcomes of RSE, as the first step in the development of a core outcome set (COS) for students with intellectual disability.
METHOD
A systematic literature process included two stages: (1) searching for studies reporting on RSE outcomes for students with intellectual disability and (2) studies reporting on measurement properties (e.g. validity, reliability and responsiveness) of standardised instruments identified in stage 1.
RESULTS
A total of 135 RSE outcomes were extracted from 42 studies: 43 outcomes for students in secondary education and 92 outcomes for students in further education. No RSE outcomes were reported for primary education. Outcomes referred to the human body, hygiene, relationships, sexuality, sex and its consequences, inappropriate and appropriate social and sexual behaviour, keeping safe, emotional vocabulary and positive self-esteem. Outcomes were predominantly knowledge-based, rather than relating to skills and attitudes development. Students with intellectual disability, parents and teachers perceive different RSE outcomes meaningful. Five instruments were used to measure the outcomes, but none have established psychometric properties with this population.
CONCLUSIONS
The comprehensive list of RSE outcomes for students with intellectual disability will be used to inform the next steps of a Core Outcome Set needed for RSE evaluations in research and education settings. There is an urgent need to develop standardised instruments validated for students with intellectual disability.
Topics: Humans; Intellectual Disability; Reproducibility of Results; Sex Education; Sexuality; Students
PubMed: 35698311
DOI: 10.1111/jir.12952