The General Practice Care of People With Intellectual Disability: Barriers and Solutions

A questionnaire exploring general practitioners' (GPs) perceptions of the barriers and solutions to providing health care to people with intellectual disability was sent to 912 randomly selected GPs throughout Australia. a response rate of 58% was obtained. Results indicated that numerous barriers compromised the quality of health care able to be provided to people with intellectual disability. communications difficulties with patients and other health professionals, and problems in obtaining patient histories stood out as the two most significant barriers. A range of other barriers were identified, including GPs' lack of training and experience, patients' poor compliance with management plans, consultation time constraints, difficulties in problem determination, examination difficulties, poor continuity of care, and GPs' inadequate knowledge of the services and resources available. General practitioners also suggested numerous solutions to these barriers, and emphasized the need for increased opportunities for education and training in intellectual disability. The GPs showed an overwhelming interest to be involved in further education. Other major solutions included increasing consultation duration or frequency, proactively involving families and carers in patients' ongoing health care, and increasing remuneration

Experience of clinical services shapes attitudes to mental health data sharing: findings from a UK-wide survey

BACKGROUND: Routinely-collected mental health data could deliver novel insights for mental health research. However, patients’ willingness to share their mental health data remains largely unknown. We investigated factors influencing likelihood of sharing these data for research purposes amongst people with and without experience of mental illness. METHODS: We collected responses from a diverse sample of UK National Health Service (NHS) users (n = 2187) of which about half (n = 1087) had lifetime experience of mental illness. Ordinal logistic regression was used to examine the influence of demographic factors, clinical service experience, and primary mental illness on willingness to share mental health data, contrasted against physical health data. RESULTS: There was a high level of willingness to share mental (89.7%) and physical (92.8%) health data for research purposes. Higher levels of satisfaction with the NHS were associated with greater willingness to share mental health data. Furthermore, people with personal experience of mental illness were more willing than those without to share mental health data, once the variable of NHS satisfaction had been controlled for. Of the mental illnesses recorded, people with depression, obsessive-compulsive disorder (OCD), personality disorder or bipolar disorder were significantly more likely to share their mental health data than people without mental illness. CONCLUSIONS: These findings suggest that positive experiences of health services and personal experience of mental illness are associated with greater willingness to share mental health data. NHS satisfaction is a potentially modifiable factor that could foster public support for increased use of NHS mental health data in research. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s12889-022-12694-z

MQ Data Science Report to MRC on building a National Infrastructure for Mental Health Data Science in the UK

At the MQ meeting on 9th September 2019 (Edinburgh), we hosted a discussion session, where we asked participants how they would envision a National Infrastructure for Mental Health Data Science (referred to as “platform” below). Participants were advised that their collected input would be fed back to the MRC to serve as a starting point for their full consultation on this topic. Key findings ● Researchers are particularly interested in using such a platform themselves and recognise its utility to a large number of other organisations. ● The minimum useful requirement for such a platform is a searchable directory of available data with a note about access procedures. Whereas an ideal platform might contain the actual data. Our participants demonstrated a wide interest in the inclusion of different data types and research areas within such a platform. ● Participants were enthusiastic about the possibilities such a platform might enable, mentioning expansion of research topics and conducting more rigorous research. They felt the platform might enable this by maximizing data quality/usage and facilitating data access. ● Participants recognised the positive impact such a platform could have on people affected by mental illness. Patterns of responses arose around patient engagement, policy shaping, open science, and improved research quality. All these elements could help fight the stigma of mental illness in society. ● With regard to the MRC consultation, our participants recognised the need to consult with a range of organisations, including data donors, ethical boards, privacy panels and relevant charities - with an observed less enthusiastic support for political involvement (which may reflect current political circumstances). ● Our participants raised a number of concerns, which the MRC may wish to address during their consultation phase. These included long-term sustainability, governance, and ethical considerations. On a practical note, questions were raised around prioritization, practicalities on data management, platform operation and relevant training and capacity building. Lastly, the participants illustrated the need to raise public awareness of and involvement in this platform in order to ensure the successful implementation

Using a knowledge exchange event to assess study participants’ attitudes to research in a rapidly evolving research context

Grant information: DJP, IJD and AMM are supported by Wellcome Trust Grant 104036. IJD, DJP, JPB and AMM, IB, EJK and SFW are supported by MRC Mental Health Data Pathfinder Grant MC_PC_17209. AMM and SML are supported by MRC Grant MC_PC_MR/R01910X/1. AMM is supported by MRC Grant MR/S035818/1. Theirworld Edinburgh Birth Cohort is funded by the charity Theirworld (www.theirworld.org), and is undertaken in the MRC Centre for Reproductive Health, which is funded by MRC Centre Grant (G1002033). CB and DJP are supported by Health Data Research UK, an initiative funded by UK Research and Innovation, Department of Health and Social Care (England) and the devolved administrations, and leading medical research charities.Peer reviewedPublisher PD

Walk well:a randomised controlled trial of a walking intervention for adults with intellectual disabilities: study protocol

Background - Walking interventions have been shown to have a positive impact on physical activity (PA) levels, health and wellbeing for adult and older adult populations. There has been very little work carried out to explore the effectiveness of walking interventions for adults with intellectual disabilities. This paper will provide details of the Walk Well intervention, designed for adults with intellectual disabilities, and a randomised controlled trial (RCT) to test its effectiveness. Methods/design - This study will adopt a RCT design, with participants allocated to the walking intervention group or a waiting list control group. The intervention consists of three PA consultations (baseline, six weeks and 12 weeks) and an individualised 12 week walking programme. A range of measures will be completed by participants at baseline, post intervention (three months from baseline) and at follow up (three months post intervention and six months from baseline). All outcome measures will be collected by a researcher who will be blinded to the study groups. The primary outcome will be steps walked per day, measured using accelerometers. Secondary outcome measures will include time spent in PA per day (across various intensity levels), time spent in sedentary behaviour per day, quality of life, self-efficacy and anthropometric measures to monitor weight change. Discussion - Since there are currently no published RCTs of walking interventions for adults with intellectual disabilities, this RCT will examine if a walking intervention can successfully increase PA, health and wellbeing of adults with intellectual disabilities

Assessment of Objectively Measured Physical Activity Levels in Individuals with Intellectual Disabilities with and without Down's Syndrome

Objective: To investigate, using accelerometers, the levels of physical activity being undertaken by individuals with intellectual disabilities with and without Down’s syndrome. Methods: One hundred and fifty two individuals with intellectual disabilities aged 12–70 years from East and South-East England. Physical activity levels in counts per minute (counts/min), steps per day (steps/day), and minutes of sedentary, light, moderate, vigorous, and moderate to vigorous physical activity (MVPA) measured with a uni-axial accelerometer (Actigraph GT1M) for seven days. Results: No individuals with intellectual disabilities met current physical activity recommendations. Males were more active than females. There was a trend for physical activity to decline and sedentary behaviour to increase with age, and for those with more severe levels of intellectual disability to be more sedentary and less physically active, however any relationship was not significant when adjusted for confounding variables. Participants with Down’s syndrome engaged in significantly less physical activity than those with intellectual disabilities without Down’s syndrome and levels of activity declined significantly with age. Conclusions: Individuals with intellectual disabilities, especially those with Down’s syndrome may be at risk of developing diseases associated with physical inactivity. There is a need for well-designed, accessible, preventive health promotio

Physical aspects of health in the learning disabled

The papers discussed in this review have identified a high prevalence of gastro-oesophageal disease, Helicobacter pylori infection and sensory impairments in people with an intellectual disability, and have advanced the understanding of dementia and osteoporosis in this population, A greater understanding of intellectual disability in the primary care setting has also emerged. Curr Opin Psychiatry 11:531-534. (C) 1998 Lippincott Williams & Wilkins