Intellectual Disability Psychiatry Research Articles

Outcome Measures in intellectual disability: A Review and narrative synthesis of validated instruments.

Outcome measurement is essential to determine the effectiveness of health interventions and improve the quality of services. The interplay of social, individual, and biological factors makes this a complex process in the psychiatry of people with intellectual disability (PwID). Review of outcome measures which are validated in PwID. A PRISMA-guided review was conducted, using a predefined criteria and a relevant word combination on four databases: EMBASE, Medline, CINAHL and PsycINFO. Each included study was examined for relevance to intellectual disability psychiatry. The psychometric data of each tool was critically assessed. Findings were narratively synthesised. Of 1,548 articles, 35 met the inclusion criteria. Several outcome measures were identified relevant to intellectual disability psychiatry, including tools for challenging/offending behavior, specific neurodevelopmental/clinical conditions such as ADHD, epilepsy, and dementia however, psychometric properties, validity and reliability varied considerably. The tools identified were largely clinician rated, with a dearth of measures suitable for completion by patients or their family carers. Most outcome measures used for PwID lack suitable psychometric properties including validity or reliability for use within the ID population. Of importance, those with alternative expression or are non-verbal have been excluded from the research developing and reporting on measurement instruments. There is an underserved population who risk being left behind in the era of value-based medicine and increasing use of outcome measurement when assessing the effectiveness of healthcare interventions on individual and population levels. This is the first of its kind review in this area.

Non‐pharmacological interventions in ID patients with challenging behaviours

The STOMP (stopping over‐medication of people with a learning disability, autism or both with psychotropic medicines) initiative and NICE guidelines regarding the management of challenging behaviour in adults with intellectual disability (ID) promote the use of non‐pharmacological approaches ahead of medication, with an emphasis also on reducing dosage or stopping medication where appropriate. Here the authors report on the findings of a service evaluation looking at how often a community intellectual disability psychiatry clinic initiates non‐pharmacological approaches in cases referred for challenging behaviour, and importantly whether this impacts the dosages of medication subsequently prescribed.

Psychiatry of Intellectual Disability in the Elderly: A Baseline Audit

Psychiatry of Intellectual Disability in the Elderly: A Baseline Audit

Evaluating workforce needs for higher specialist training for psychiatry of intellectual disability in Kent, Surrey and Sussex: a workforce scoping service evaluation

PurposeWhilst recruitment and retention of high-quality staff is vital to providing a good service, at the time of the evaluations, Kent, Surrey and Sussex (KSS) was the only area of the UK without a Higher Specialist Training (HST) scheme in intellectual disability (ID). The purpose of this project was to identify barriers to recruitment and support the need for change.Design/methodology/approachThis evaluation included conducting interviews with 16 practitioners in the region with links to ID to consider the gaps in training and find solutions.FindingsFour themes were identified, namely, good experiences are important to recruiting people into the ID field; bad experiences or lack of exposure to people with ID are likely to prevent engagement with this field; there is an ongoing need for specialist psychiatrists in ID services; and there is a developing need for specialists in neurodevelopmental disorders. Finally, the challenge means we need to think differently about developing a workforce. Seven recommendations to support workforce delivery in KSS were developed.Originality/valueThis paper highlights an important rationale for ongoing need for HST in ID work and also reasons to engage people in this field. This has not been undertaken in the ID field in this way previously.

COVID‐19 and psychopathology of patients with intellectual disability

People with intellectual disability (ID) are much more vulnerable to psychiatric illnesses than the general population and as such the pandemic has most likely affected their mental health. The mental health of patients with ID has been affected due to factors such as reduction in staffing levels due to illness, day services and respite care being closed, restrictions to visits and to going out to public places. This case series explores the mental health implications that contracting COVID‐19 had on five patients with ID attending an intellectual disability psychiatry service and reflects upon key messages for clinical practice.

Evaluating the Impact of a Simulation Based Training Course in Intellectual Disability Psychiatry and Autism Co-Delivered by Actors With Intellectual Disability

AimsInequalities in health outcomes, and avoidable deaths, in people with intellectual disability has highlighted the need for improved training and education in Intellectual Disability and Autism. Simulation training facilitated by actors with intellectual disability has been shown to improve connection with people with intellectual disability (Attoe et al 2017). The aim of this project was to develop a simulation-based training course, focused on topics in mental health, intellectual disability and autism, to improve participant confidence in clinical knowledge and skills, as well as support leadership and professionalism training. Here we evaluate the impact of the training on participants’ confidence, and the longer-term effect on attitudes and working practice after attendance.MethodsA novel simulation-based training course, directed at Specialty Trainees, was developed based on the Specialty Training in Learning Disability curriculum. The course was co-delivered by a person with intellectual disability. Participants who attended the simulation training completed general feedback, pre-course and post-course confidence questionnaires and attended a semi-structured group interview at 2 months. Questionnaire data weres analysed using descriptive and inferential statistics. Group interview data were analysed using open & axial coding, and thematic analysis of content. The project was approved by East London NHS Foundation Trust Governance and Ethics Committee for Studies and Evaluations.ResultsEight psychiatrists participated in the training and completed the pre-course and post-course questionnaires. Independent t-test found significant increase in confidence for all scores from pre-course (M = 6.54, SE0.24) to post-course (M = 7.81, SE = 0.36), t= –2.93 p = 0.01. This included ratings of confidence in knowledge in areas such as mental health legislation, and improved confidence in skills such as communication with families of people with intellectual disability and difficult conversations with senior supervisors. In follow-up interviews we elucidated themes of the importance of supported, structured training opportunities with people with intellectual disability, and the value of connection with peers and supervisors.ConclusionSimulation based training in psychiatry, co-delivered with actors with intellectual disability, was reported to be an engaging and enjoyable form of learning. The evaluation suggests such training is effective in increasing trainee confidence in knowledge and skills at the time of training as well as resulting in a lasting change in attitudes after the training. We recommend such training be further developed and delivered at both postgraduate and undergraduate level.

Cardiovascular risk quantification using QRISK-3 score in people with intellectual disability

AimsThe prevalence of cardiovascular diseases (CVD) in people with intellectual disability (ID) is around 14%, higher than the general population. However, CVD risk assessments are not consistently performed. Given the high risk of premature deaths in people with ID, it is important to identify preventable risk factors and follow evidence-based interventions. QRISK-3 is a validated risk-stratification tool, which calculates the 10-year risk of developing a heart attack or stroke (https://qrisk.org/three/index.php). There are no published studies on the use of QRISK-3 in people with ID. This project aimed to understand the use of QRISK-3 in an ID clinic and to quantify individual CVD risks to recommend appropriate management options.MethodA cross sectional study was performed on 143 patients open to an ID psychiatry clinic. Patients and carers were sent an accessible information leaflet on this study. Basic demographic data and information on psychiatric diagnoses were collected. Patients were grouped according to the presence of severe mental illness (SMI) defined as schizophrenia, bipolar disorder and other psychotic illnesses. QRISK-3 ≥ 10% was defined as elevated risk in accordance with NICE guidelines. Patients who had a high QRISK-3 score were advised to contact their GP.ResultOf 143 patients, 73 (51.0%) had a mild ID and the remaining had a moderate to severe ID. The mean age was 43.3 years, 53.1% were male. Overall, 28 (19.6%) participants had an elevated CVD risk, of whom 16 (57.1%) were not on statins, which is the recommended treatment. The mean QRISK-3 score was 6.31 (standard deviation [SD] 8.95), and the relative risk is 3.50 (SD 7.13). The proportion of QRISK-3 ≥ 10% and mean score were not significantly different in those with SMI, but those with SMI were more likely to be prescribed statins than those without (14 [31.1%] vs 10 [10.2%], p = 0.002). Statins were given to 24 (16.8%) participants, of whom 12 (50%) had elevated CVD risk. 89% had a blood pressure recording within the past 5 years, 87% had height and 88% had weight recorded. 73% had lipid serology results recorded.ConclusionElevated CVD risk was common in this ID study population, and more than half with elevated QRISK-3 were not on the medical treatment recommended by national guidelines. QRISK-3 could feasibly be implemented in the outpatient setting. Increased routine CVD risk assessment and management should be considered as another measure to reduce morbidity and mortality.

Statin prescription and CV risk assessment in adult psychiatric outpatients with intellectual disability.

We performed a single-centre study to assess the risk of cardiovascular disease (CVD) in psychiatry outpatients with intellectual disability (ID) using the QRISK-3 score. There were 143 patients known to the ID psychiatry clinic enrolled. Of these, 28 (19.6%) had elevated CVD risk - defined as 10-year risk of heart attack or stroke of ≥10%. Of these, 57.1% were not prescribed statin therapy, which - after lifestyle measures - is recommended by National Institute for Health and Care Excellence (NICE) guidelines. The mean QRISK-3 score was 6.31% (95% confidence interval [CI] 4.84 to 7.78), with a relative risk of 3.50 (95%CI 2.34 to 4.67) compared with matched controls. The high CVD risk identified in this study supports routine CVD risk assessment and management in adult outpatients with ID. Appropriate lifestyle measures and statin therapy could help reduce the excess CVD-related morbidity and mortality in ID patients.

The current state of training in psychiatry of intellectual disability: perspectives of trainees and trainers.

Twelve intellectual disability psychiatry trainee representatives and 13 training programme directors were surveyed to assess the current state of training, to establish what motivated specialty trainees to choose intellectual disability psychiatry, and to explore issues that might affect retention. The combined survey response rate was 83%. All trainees had chosen intellectual disability psychiatry after experience in either their personal or working life. Overall, specialty trainees were satisfied with their training; the majority felt supported to meet training requirements. Trainee isolation was the main concern for current trainees. Recruitment for specialty training in intellectual disability psychiatry is acknowledged to be a concern for workforce planning and could affect access to and quality of psychiatric care for people with intellectual disability. The results of this survey could be used as a guide to improve efforts to attract trainees. Acknowledging and reducing trainee isolation could improve trainee morale.

Interface between community intellectual disability and general adult psychiatry services

SUMMARYPeople with intellectual disability can have a range of common mental health difficulties that sit at the interface of two psychiatry subspecialties: intellectual disability and general adult psychiatry. Clinical presentations, comorbidities and complexities can affect the setting of boundaries between the two disciplines. This article touches on current concepts, drives for inclusion of people with intellectual disability in mainstream psychiatry services and some of the difficulties at the interface. It focuses on potential solutions for managing this interface between the two subspecialties.

Are we training psychiatrists to develop skills in intellectual disability psychiatry? Current European context and future directions.

The majority of people with intellectual disabilities (ID) and psychiatric disorders access mainstream mental health services across Europe. However, only 56% of countries provide postgraduate psychiatric training in ID according to a survey across 42 European countries. We explore the challenges of ID training and make recommendations for education and health policymakers.

Subspecialty training pathways in intellectual and developmental disability psychiatry in Australia and New Zealand: current status and future opportunities.

This study aimed to examine the training experiences of and determine capacity to train future Australian and New Zealand psychiatrists working in intellectual and developmental disability mental health. Australian and New Zealand psychiatrists with expertise or interest in intellectual and developmental disability mental health completed an online survey detailing their training pathway, support for subspecialty training and capacity to provide rotations in this area. Psychiatrists (n=71) indicated the most common reasons they started practicing in intellectual and developmental disability mental health, and these included seeing people with intellectual or developmental disability in a service in which they worked, or personal experience with intellectual or developmental disability. Compared to those trained overseas, psychiatrists trained in Australia or New Zealand had lower ratings of the sufficiency of education received in intellectual and developmental disability mental health. Of the total respondents, 80% supported the development of subspecialty training. Augmentation of intellectual and developmental disability mental health content in the intermediate stage of training was also strongly supported. Participants identified 80 potential six-month training rotations in this area. Psychiatrists working in intellectual and developmental disability mental health strongly support enhancements to intellectual or developmental disability training, including the development of subspecialty training, and can identify potential training capacity if such subspecialty training was developed.

Telepsychiatry in intellectual disability psychiatry: literature review.

Aims and MethodThe aims of this review were to explore the effectiveness and patient and provider acceptability of telepsychiatry consultations in intellectual disability, contrasting this with direct face-to-face consultations and proposing avenues for further research and innovation. Computerised searches of databases including AMED and EMBASE were conducted. RESULTS: Four USA studies of intellectual disability telepsychiatry services have been reported. The majority (75%) focused on children with intellectual disability. Sample sizes ranged from 38 to 900 participants, with follow-up from 1 to 6 years. Outcome measures varied considerably and included cost savings to patients and healthcare providers, patient and carer satisfaction and new diagnoses.Clinical implicationsThe innovations summarised suggest a requirement to further explore telepsychiatry models. Despite some promising outcomes, there is a relative dearth in the existing literature. Further studies in other healthcare systems are required before concluding that telepsychiatry in intellectual disability is the best approach for providing psychiatric services to this population.Declaration of interestNone.

Awareness, attitudes, skills and training needs of psychiatrists working with adults with intellectual disability in managing epilepsy

PurposeComorbid epilepsy is found in 22.5% of people with intellectual disability (ID). Responding to the continuing lack of clarity to the role of the ID psychiatrist in the United Kingdom with regards to epilepsy care, the Royal College of Psychiatrists (RCPsych) published the College Report (CR) 203 in May 2017. This proposed a three-tiered model of competency in ID epilepsy care, with minimum acceptable standards described as Bronze and greater expertise as Silver and Gold. This article documents the perceptions of ID psychiatrists as to their skills and training needs, and the perceived impact of CR203 on the profession. MethodsAn e- questionnaire, matching the standards on CR203 and encouraging comments was designed, reviewed and approved by the RCPsych ID executive faculty. The survey was sent by email to all UK-registered RCPsych ID Faculty members via the RCPsych communications. ResultsOf the expected 332 ID psychiatrists in the UK, 141 responses were received (42.4%). Key findings included that ID psychiatrists as a group have an interest in epilepsy but Bronze standards were frequently unmet, with variation across the UK. There was a noted lack of agreement on role among ID psychiatrists again linked to geographical variation. Regional disparity correlated to population density and proximity to tertiary neurological centres. ConclusionThere are significant implications on training, both pre- and post- accreditation for the ID psychiatry speciality. The CR203 standards appear to be steps in the right direction to help define the role ID psychiatrists have in the delivery of epilepsy care.

Genetic testing in intellectual disability psychiatry: Opinions and practices of UK child and intellectual disability psychiatrists.

BackgroundAn increasing number of genetic causes of intellectual disabilities (ID) are identifiable by clinical genetic testing, offering the prospect of bespoke patient management. However, little is known about the practices of psychiatrists and their views on genetic testing.MethodWe undertook an online survey of 215 psychiatrists, who were contacted via the Royal College of Psychiatrist's Child and Adolescent and Intellectual Disability Psychiatry mailing lists.ResultsIn comparison with child and adolescent psychiatrists, intellectual disability psychiatrists ordered more genetic tests, referred more patients to genetic services, and were overall more confident in the genetic testing process. Respondents tended to agree that genetic diagnoses can help patient management; however, management changes were infrequently found in clinical practice.ConclusionsDifferences are apparent in the existing views and practices of child and adolescent and intellectual disability psychiatrists. Developing training and collaboration with colleagues working in genetic services could help to reduce discrepancies and improve clinical practice.

Trainee experiences of intellectual disability psychiatry and an innovative leaderless support group: a qualitative study.

Aims and method There is very little research into the challenges of training in intellectual disability psychiatry or into interventions which may address these challenges. Using focus groups, we explored the experiences of intellectual disability psychiatry trainees, and evaluated a leaderless trainee support group developed in Bristol.Results Five distinct themes were identified via framework analysis: that trainees felt unprepared for the difference from previous posts; the need for support; the value of the group; that trainees were concerned about judgement in supervision; that the group structure was valued.Clinical implications Our findings highlight the support needs specific to intellectual disability psychiatry trainees. Leaderless peer support groups may be a valued resource to address such issues, and may be a useful model to be considered by other training schemes.

Perceptions of psychiatry residents and non-residents on training needs and care related to patients with intellectual disability and mental health problems: A study from Singapore

ABSTRACTBackground: People with intellectual disability (ID) have higher risk of mental morbidity and specialised training may be required in their management. We explored the training needs and knowledge as well as perceptions of care of such patients among residents and non-residents working in psychiatry.Method: The study was conducted as an anonymous survey. Questionnaires were sent to all residents and non-residents at a large psychiatric hospital in Singapore.Results: Forty-eight out of the 76 questionnaires sent out were returned. All participants responded that postgraduate training was required in the area of ID and mental health and according to the majority, available training was inadequate. Over 90% believed that people with ID were vulnerable to exploitation and they should be under a specialist team.Conclusion: Efforts should be made to include specialist training in psychiatry of ID in the Singapore psychiatry curriculum to enhance the knowledge and expertise of psychiatrists in this field.

Intellectual disability psychiatry: a competency-based framework for psychiatrists

ABSTRACTThis paper is aimed at establishing a competency-based framework for undergraduate, graduate trainee and practicing psychiatrists and has evolved from the initial work of World Psychiatric Association (WPA) on outcome-based parity and human rights-based equity for people with intellectual disability and mental health problems.

Reaching rural Ohio with intellectual disability psychiatry

Individuals with intellectual disability experience higher rates of mental illness when compared with the general population, and there is a lack of medical and mental health professionals in rural and under-served areas. With the increase in discharge of individuals from institutional settings back to their home communities into the least restrictive environments, there are more patients with complex needs being added to the schedules of physicians in the outpatient delivery care system. Patients with disabilities may not travel well or tolerate changes in routine so may not have access to psychiatry. Utilization of telepsychiatry is well suited to this specialized patient population because it allows a highly traumatized group to meet with a psychiatrist and other mental health professionals from a location of their choice. Ohio’s Telepsychiatry Project for Intellectual Disability was initiated in 2012 to serve outlying communities with a lack of infrastructure and resources, to provide specialized mental health services to individuals with co-occurring mental illness and intellectual disability. After five years, over 900 patients with intellectual disability from 64 of Ohio’s 88 counties receive specialized mental health treatment through this statewide grant-funded project.

Perceptions of residents and non-residents in psychiatry on training needs and care of patients with intellectual disability and mental health problems: A study from Singapore

Background and ObjectivePsychiatric assessment and care of people with Intellectual Disability (ID) is complex due to their cognitive and communication impairments. Demand for further training in this area by trainees in psychiatry has been well documented. The main of aims of this study were to explore the attitudes and perceptions of psychiatry residents and non-residents (non-trainees) with regards to care of patients with ID as well as their knowledge and training in this area.MethodThe study was conducted as an anonymous survey at the Institute of Mental Health, Singapore. A survey questionnaire developed by the study team was sent to residents and non-residents in psychiatry.ResultsForty-eight out of the 76 questionnaires were returned with a response rate of 63.16%. Twenty-eight participants described themselves as non-residents and the rest were residents. All participants responded that postgraduate training was required in the area of ID and mental health and majority reported that available training was inadequate. Ninety percent of respondents believed that people with ID were vulnerable to exploitation by other patients in the inpatient unit and 94% of respondents believed that people with ID should be managed by a specialist team.ConclusionCurrently residents and non-residents in psychiatry see that training in ID and mental health as well as services for people with ID as inadequate. Efforts should be made to include specialist training in psychiatry of ID in the Singapore psychiatry curriculum to enhance the confidence and expertise of psychiatrists in this field.