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People with intellectual disability face extensive health inequality and premature mortality. Medical students have reported that they lack the skills, knowledge and confidence to work with those with intellectual disability and autism. This emphasises the need for tomorrow’s doctors to be adequately trained. This study aims to investigate students’ knowledge, skills and attitudes towards people with intellectual disability and autism, examining whether these outcomes change following curricula re-design and with implementation of an e-learning module.

The university curricula in intellectual disability and autism were re-designed and an e-learning module developed using co-production. This was delivered to fourth-year medical students with a subgroup receiving the additional e-learning. A controlled trial evaluated students’ knowledge, skills and attitudes using pre- and post-questionnaires. Statistical tests of difference were used to the scores obtained.

This study showed an improvement in knowledge, skills and attitudes with intellectual disability and autism after curricula engagement, with an incremental benefit observed for students also completing the e-learning module. There was significant difference in pre-and-post placement scores assessing student attitudes towards intellectual disability and autism teaching.

This study highlights the importance of a multi-faceted, co-produced curricula re-design in intellectual disability and autism. The benefit of the e-learning module holds hope that the newly introduced mandatory Oliver McGowan training will be beneficial in the development of tomorrow’s doctors. Effective training in intellectual disability and autism is vital to improve the care and support delivered and reduce unnecessary deaths.

This paper aims to underline the importance of using a collaborative approach when designing and adapting a post diagnostic psychosocial intervention of cognitive stimulation therapy (CST) for people with intellectual disability and dementia.

As part of a service improvement, a manual of CST was adapted, for delivery in clinical practice. A qualitative co-production method allowed participants with a lived experience to provide regular feedback relating to the development of the adapted CST manual and intervention programme. This feedback was used to make continual development changes to the CST manual.

The study demonstrated co-production with those who provide care is valuable in adapting psychosocial therapies for people with an intellectual disability and dementia. Additional findings identified the need for carer education in ageing, dementia care and the physical health needs for older people with intellectual disability.

To the best of the authors’ knowledge, this is the first study that has used a co-production approach with families and carers in adapting a group therapy programme for people with an intellectual disability. This paper underlines the need for post diagnostic clinical interventions for people with dementia and those who provide care.

According to NHS statistics, as of July 2023, there were around 2045 people with intellectual disability and autistic people in mental health and specialist hospitals. Details of their inpatient stay were captured through Assuring Transformation data returns (NHS Digital, 2023) and includes data on all types of mental health hospitals. This study aims to understand the characteristics of people with intellectual disability and of autistic adults who are in inpatient settings across north of England in February 2022. It explores the clinical and demographic factors that might have an impact on the length of their inpatient stay.

This is a cross-sectional study using routinely collected demographic and clinical data in 2022 of inpatients across the north of England.

A total of 625 patients were in an inpatient setting across the north of England at the time of the data collection. The results indicate that the underlying diagnostic category, region, nature of inpatient service, legal framework, reason for admission and outcome of Care (Education) and Treatment Reviews are factors that are associated with the person’s length of stay in a hospital.

This study highlighted the need to review the community models of care to meet needs of those with intellectual disability. It further highlighted the need to collect and analyse longitudinal data, address social care needs and further understand the factors linked to regional variations.

To the best of the authors’ knowledge, this is a first study that investigated the factors associated with length of stay using inpatient data from across the north of England. It provides new insights into the factors that affect length of stay.

This study aims to investigate the demographic and clinical characteristics associated with different risk stratification levels on the Decision Support Tool for Physical Health (DST-PH). The DST-PH was designed to stratify risk of avoidable mortality in adults with intellectual disabilities.

A prospective cohort study design was used. Data, including age, gender, ethnicity and completed DST-PH assessments, was collected from adults with intellectual disabilities within an NHS trust in the North-West of England. Descriptive statistics and a risk factor analysis were used to investigate differences between those rating Red, Amber and Green on the DST-PH.

Risk factor analysis revealed key clinical indicators linked to avoidable mortality. Notably, those experiencing posture or mobility difficulties, transitions in care, an untreated or unstable mental health condition or significant behavioural problems were identified to be at significantly heightened risk of avoidable death. These findings emphasise the importance of proactively recognising and addressing these experiences, particularly posture- and mobility-related challenges, in individuals with intellectual disabilities. It is important to note this study’s findings are based on a small sample size. Therefore, further research with a larger and more diverse population is recommended to validate and expand upon these results.

To the authors’ knowledge, this is the first study which has used a risk stratification tool to investigate the clinical and demographic characteristics of individuals with intellectual disability at higher risk of avoidable mortality.

Individuals with intellectual disability have an increased predisposition to other co-morbid physical health conditions, mental illness and neurodevelopmental conditions including autism spectrum condition. There are challenges in diagnosing autism in adults with intellectual disability, and these are often attributes to the complexities in symptoms. The purpose of this paper is to describe the development of the autism diagnostic aid (ADA) tool and face and content validation of its properties.

The ADA tool was developed following a detailed scoping exercise which included literature reviews, observations and discussion with wider multi-disciplinary team members. A face and content validation after consultation with eight experts who are trained and routinely perform assessments for autism spectrum disorders. The experts also have expertise in working with individuals with intellectual disability.

The experts agreed that the ADA tool is appropriate to the targeted construct and assessment objectives as a diagnostic aid in the assessment of autism in adults with intellectual disability. They also determined that the content of ADA tool was valid for its use as a diagnostic aid in the diagnosis of adults with intellectual disability.

The ADA tool was considered a valid tool from the expert’s perspective. It was identified to have a good face and content validity. To the best of the authors’ knowledge, the ADA is first of its kind tool, developed specifically to aid clinicians with autism assessments in adults with intellectual disability.

This tool could potentially help with timely assessment and help with providing appropriate intervention but would require further exploration.

To the best of the authors’ knowledge, this is the first of its kind tool for the assessment of autism in adults with intellectual disability.

This preliminary study aims to examine the use of a co-designed immersive virtual reality intervention programme in improving access to health care for people with intellectual disability.

A co-production approach was used to design a virtual reality intervention in collaboration with people with intellectual disability, their families and carers. A mixed-method single sample pre-test-post-test design examined using a virtual reality intervention simulating health-care environments to improve access of attending health-care appointments. Qualitative feedback was used to understand participants’ experience and opinions of using the digital technology.

The study found that the intervention did help people access health-care appointment and reduced their fear. Improvements were also found in quality-of-life post intervention. Positive feedback was provided from participants on using digital technologies indicating the novelty of the approach and potential further applications.

To the best of the authors’ knowledge, this is the first study which has used virtual reality to support people with intellectual disability access health care.

People with intellectual disability die prematurely and from avoidable causes. Innovative solutions and proactive strategies have been limited in addressing this disparity. This paper aims to detail the process of developing a risk stratification tool to identify those individuals who are higher risk of premature mortality.

This study used population health management principles to conceptualise a risk stratification tool for avoidable deaths in people with intellectual disability. A review of the literature examined the existing evidence of causes of death in people with intellectual disability. A qualitative methodology using focused groups of specialist clinicians was used to understand the factors that contributed towards avoidable deaths in people with intellectual disability. Delphi groups were used for consensus on the variables for inclusion in the risk stratification tool (Decision Support Tool for Physical Health).

A pilot of the Decision Support Tool for Physical Health within specialist intellectual disability service demonstrated effective utility and acceptability in clinical practice. The tool has also demonstrated good face and construct validity. A further study is currently being completed to examine concurrent and predictive validity of the tool.

To the best of the authors’ knowledge, this is the only study that has used a systematic approach to designing a risk stratification tool for identifying premature mortality in people with intellectual disability. The Decision Support Tool for Physical Health in clinical practice aims to guide clinical responses and prioritise those identified as at higher risk of avoidable deaths.

This study aims to evaluate the dementia assessment and diagnosis care provided to adults with intellectual disability. The authors selected recommendations from the National Institute for Health and Care Excellence (NICE) standards which could be evidenced in clinical notes and aimed to identify characteristics which may be associated with improved adherence to these recommendations.

The study population was adults with an intellectual disability who were diagnosed with dementia between January 2019 and December 2022 by a UK-based intellectual disability service. Data to demonstrate adherence to selected recommendations and demographic and clinical characteristics were extracted from electronic patient records.

The authors identified 41 individuals. A mean of six of the eight recommendations were adhered to. There was low adherence with structural imaging to support dementia subtype diagnosis (9 individuals, 22%). This may be linked with the low percentage of people diagnosed with vascular dementia (1 individual, 2%) despite a national figure of 20%. No demographic or clinical characteristics were associated with level of adherence recorded. The authors found incomplete recording of diagnostic clinical coding in electronic patient records. This may disadvantage this population, as they cannot be readily identified for post diagnostic support or resource allocation.

To the best of the authors’ knowledge, this is the first study to examine adherence to these NICE guidelines in this population.

Autistic young people have health and care needs that may benefit from a multi-agency intervention. The “Current View” tool is routinely used in England to profile the needs of young people referred to mental health services. This study aims to examine associations between comorbidities and complex needs in autistic and non-autistic young people to assess the multifaceted needs of autistic young people.

A cohort study was conducted using data from the electronic patient record, comparing autistic and non-autistic young people to see which items in the four “Current View” tool categories were associated with autistic young people.

Issues associated with autistic young people were: “community issues”, “attainment issues” and “deemed child in need” (all p < 0.001). Autistic young people scored significantly more items (p < 0.05) in the categories complexity/contextual/educational factors. Comorbidities associated with autistic young people included anxiety, “behavioural difficulties”, “peer relationship difficulties” and “self-care issues” (all p < 0.001). There was an association with increased comorbidities and complexity factors in autistic young people which suggests increased support from agencies may be beneficial.

Few studies have used data in the “Current View” tool to assess young people referred to services. More use could be made of this data for planning and delivering services.

Education and training is vital in improving age-related care provisions. However, a lack of awareness and understanding of dementia could be a factor in meeting the age-related needs of people. This paper aims to examine the impact dementia education has on caregivers’ confidence to provide person-centred care for people with intellectual disability and identifies additional training needs.

A systematic scoping review was completed using preferred reporting items for systematic reviews and meta-analyses to guide the process of mapping existing evidence of dementia education and training programmes available to caregivers of people with intellectual disability.

A search of five electronic databases identified 11 articles that reported on the role of dementia education in improving the knowledge of caregivers in effectively delivering the age-related care. Findings suggest that improved training provision is needed to support early diagnosis and increase caregivers’ confidence in meeting the physical and psychological needs of older adults with intellectual disability.

This review contributes to the literature by identifying the value of and need for continued development in dementia education and training to improve person-centred dementia care.