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Background: People with intellectual disabilities (ID) die on an average 20 years earlier to the general population. They have higher rates of multimorbidity and polypharmacy. Around 25% of people with ID report chronic constipation. The England Learning Disabilities Mortality Review found that nearly 25% of deaths identified constipation as a long‐term health problem. However, the likely risk factors for constipation related harm are poorly enumerated. We sought to identify possible specific high‐risk factors by examining the clinical characteristics of people with ID admitted to hospital with constipation. Methods: Data of people with ID admitted with constipation in two general hospitals covering a population of 1.3 million from 2017 to 2022 were reported using the STROBE guideline for cohort studies. Collected data included age, gender, intellectual disability severity, recorded medication, presenting complaint and co‐morbidities. The medication anticholinergic burden was calculated using the anticholinergic burden scale. Continuous variables were summarised by mean and standard deviation if normally distributed, with categorical variables summarised by the number and percentage in each category. Results: Of 46 admissions (males 52%), 57% had moderate to profound ID, 37% had epilepsy, 41% prescribed antiseizure medication (ASM) and 45% were on laxatives. Average age was 46 years. The anticholinergic burden score mean was 2.3 and median, one. Conclusions: We can hypothesise that people with more severe ID, suffering from epilepsy and on ASM may be more at risk of developing severe constipation. Some admissions may be avoided with earlier use of laxatives in the community. [ABSTRACT FROM AUTHOR]

Background: The study aims to understand system barriers to research participation for people with intellectual disabilities. Methods: A mixed‐methods approach examined the inclusivity of people with intellectual disabilities (IDs) in a random sample of National Institute for Health and Care Research (NIHR) studies conducted in 2019–2020. An online questionnaire (stage 1) was sent to the selected studies lead investigators. An expert by experience panel of 25 people with intellectual disabilities (IDs, stage 2), discussed the stage 1 feedback. Descriptive statistics for quantitative data and thematic analysis for qualitative data was conducted. Results: Of 180 studies reviewed, 131 studies (78%) excluded people with IDs. Of these, 45 (34.3%) study researchers provided feedback. Seven (20%) of the 34 studies which included people with IDs gave feedback. Of all respondents over half felt their study had some relevance to people with IDs. A minority (7.6%) stated their study had no relevance. For a quarter of respondents (23.5%), resource issues were a challenge. Qualitative analysis of both stages produced four overarching themes of Research design and delivery, Informed consent, Resource allocation, and Knowledge and skills. Conclusion: Health research continues to exclude people with IDs. Researchers and experts by experience identified non‐accessible research design, lack of confidence with capacity and consent processes, limited resources such as time and a need for training as barriers. Ethics committees appear reluctant to include people with cognitive deficits to 'protect' them. People with IDs want to be included in research, not only as participants but also through coproduction. [ABSTRACT FROM AUTHOR]

Background and purpose: Good practice guidelines highlight the importance of making people with epilepsy aware of the risk of premature mortality in epilepsy particularly due to sudden unexpected death in epilepsy (SUDEP). The SUDEP and Seizure Safety Checklist (‘Checklist’) is a structured risk communication tool used in UK clinics. It is not known if sharing structured information on risk factors allows individuals to reduce SUDEP and premature mortality risks. The aim of this study was to ascertain if the introduction of the Checklist in epilepsy clinics led to individual risk reduction. Methods: The Checklist was administered to 130 consecutive people with epilepsy attending a specialized epilepsy neurology clinic and 129 attending an epilepsy intellectual disability (ID) clinic within a 4‐month period. At baseline, no attendees at the neurology clinic had received formal risk advice, whereas all those attending the ID clinic had received formal risk advice on multiple occasions for 6 years. The Checklist was readministered 1 year later to each group and scores were compared with baseline and between groups. Results: Of 12 risk factors considered, there was an overall reduction in mean risk score for the general (P = 0.0049) but not for the ID (P = 0.322) population. Subanalysis of the 25% of people at most risk in both populations showed that both sets had a significant reduction in risk scores (P < 0.001). Conclusion: Structured discussion results in behavioural change that reduces individual risk factors. This impact seems to be higher in those who are at current higher risk. It is important that clinicians share risk information with individuals as a matter of public health and health promotion. [ABSTRACT FROM AUTHOR]

Objective: This study aimed to determine the prevalence of alcohol use amongst attendees of psychiatric secondary care in Kumasi and compare this with other African and European studies. Method: Patients attending the psychiatric out patient clinic were interviewed using the WHO Alcohol Use Disorders Identification Test (AUDIT). Demographic data and type of alcohol consumed were also recorded. The study took place in the psychiatric outpatients in an urban area in Kumasi, Ghana, West Africa. Results: Responses were obtained for 350 of 551 (63.5%) consecutive clinic attendees over a 3-week period. The prevalence of hazardous drinking (AUDIT score > or = 8) in psychiatric outpatients was 8.6% (n=30). Sixteen percent (n=56) scored 1-7 and the remainder were abstainers (AUDIT = 0). Hazardous drinkers were more likely to be diagnosed with substance dependence and less likely to be diagnosed with an anxiety disorder or psychosis. The strongest predictor of risk was male gender. Conclusions: Alcohol misuse occurs in psychiatric out patients in Ghana with a prevalence at least equivalent to other African countries but much lower than that seen in European studies. The demographics of problem drinkers differ from those seen in Europe. [ABSTRACT FROM AUTHOR]

Background: Adherence to anti-seizure medication (ASM) by people diagnosed with epilepsy in sub-Saharan Africa remains low. The factors for low adherence are not well understood. To improve adherence, it is important to understand the perceptions and views of healthcare professionals delivering epilepsy care to this population. The aim was to investigate the factors influencing ASM adherence., Methods: This study uses a brief online questionnaire which asked healthcare professionals (both from nursing and medical backgrounds) who work in sub-Saharan African countries to rate a set of pre-established options designed with the feedback of a local focus group of epilepsy experts from countries targeted. The questionnaire consisted of six questions and was a mix of multiple choice and Likert scale questions., Results: There were 217 healthcare professionals who replied to the questionnaire. The most important factors believed to be influencing adherence from a healthcare professional perspective are; lack of availability of medication for epilepsy (71 %), affordability of medication (60 %), the patient, family, carer lacking in understanding of medication (43 %), cultural misconceptions about epilepsy (40 %) and side effects of the medication (32 %). The survey was answered by many different healthcare professionals; 65 participants were doctors and 152 were other healthcare professionals such as nurses (59 %) pharmacists (10 %) and when comparing them, the three most important categories were consistent across groups., Conclusion: Healthcare workers in Sub-Saharan Africa identify that the primary factors impacting adherence to ASMs, in their view, is affordability and availability of ASMs.Addressing this issue may reduce the treatment gap., Competing Interests: Conflict of Interest Tolu Olaniyan is the CEO of Pretola Global Health & Consulting Ltd (GHC) which runs commercial awareness courses on epilepsy and mental health matters. MK has received honoraria to provide talks to peer audiences and for conference travel from UCB, Eisai and Angelini Pharma. RS has received institutional research, travel support and/or honorarium for talks and expert advisory boards from LivaNova, UCB, Eisai, Veriton Pharma, Bial, Angelini, UnEEG and Jazz/GW pharma outside the submitted work. He holds or has held competitive grants from various national grant bodies including Innovate, Economic and Social Research Council (ESRC), Engineering and Physical Sciences Research Council (ESPRC), National Institute of Health Research (NIHR), NHS Small Business Research Initiative (SBRI) and other funding bodies including charities all outside this work. No other author has any declared conflict of interest related to this paper., (Copyright © 2024 The Authors. Published by Elsevier B.V. All rights reserved.)

Background: People with epilepsy are at increased risk of multiple co-morbidities that may influence risk of adverse outcomes including impact on quality of life and premature mortality. These risk factors include potentially modifiable clinical characteristics associated with sudden unexpected death in epilepsy (SUDEP). For services to tackle risk, the clinical complexity of the target epilepsy population needs to be defined. While this has been comprehensively studied in large, economically developed countries little knowledge of these issues exist in small economically developed countries, like Malta (population: 500,000)., Methods: This was a single centre study focused exclusively on patients attending Gozo General Hospital (GGH) Malta. STROBE guidance for reporting cross sectional studies was used to design and report the study. This was a retrospective review of standard care and SUDEP and seizure risks provided to all adults (over 18 years) with epilepsy attending GGH (2018-2021)., Results: The review identified 68 people and 92% were compliant with their anti-seizure medication. A fifth (21%) had an intellectual disability. Despite only one patient having a psychotic illness, 19% were on antipsychotic medication. Only 18% of patients had a specific epilepsy care plan, 6% nocturnal surveillance and none had received advice on SUDEP., Discussion: Patient outcomes may be improved with increasing rates of personalized epilepsy care plans, appropriate nocturnal surveillance and reducing the prescription of antipsychotic medication as it is associated with greater risk of mortality. Issues such as stigma and shame appear to play a significant role in small communities and their access to care., Competing Interests: Declaration of competing interest The authors declare the following financial interests/personal relationships which may be considered as potential competing interests: RS has received institutional and research support from LivaNova, UCB, Eisai, Neurxpharma Angelini, UnEEG, Jazz/GW pharma grants from NIHR AI, SBRI and other funding bodies outside the submitted work. No other author has any declared conflict of interest related to this paper., (Copyright © 2024 The Author(s). Published by Elsevier Inc. All rights reserved.)

Background: Constipation is overrepresented in people with intellectual disabilities. Around 40% of people with intellectual disabilities who died prematurely were prescribed laxatives. A quarter of people with intellectual disabilities are said to be on laxatives. There are concerns that prescribing is not always effective and appropriate. There are currently no prescribing guidelines specific to this population., Aims: To develop guidelines to support clinicians with their decision-making when prescribing laxatives to people with intellectual disabilities., Method: A modified Delphi methodology, the RAND/UCLA Appropriateness Method, was used. Step 1 comprised development of a bespoke six-item, open-ended questionnaire from background literature and its external validation. Relevant stakeholders, including a range of clinical experts and experts by experience covering the full range of intellectual disability and constipation, were invited to participate in an expert panel. Panel members completed the questionnaire. Responses were divided into 'negative consensus' and 'positive consensus'. Members were then invited to two panel meetings, 2 weeks apart, held virtually over Microsoft Teams, to build consensus. The expert-by-experience group were included in a separate face-to-face meeting., Results: A total of 20 people (ten professional experts and ten experts by experience, of whom seven had intellectual disability) took part. There were five main areas of discussion to reach a consensus i.e. importance of diagnosis, the role of prescribing, practicalities of medication administration, importance of reviewing and monitoring, and communication., Conclusions: Laxative prescribing guidelines were developed by synthesising the knowledge of an expert panel including people with intellectual disabilities with the existing evidence base, to improve patient care.

Background: Recovery colleges provide personalised educational mental health support for people who self-refer. The research evidence supporting them is growing, with key components and the positive experiences of attendees reported. However, the quantitative outcome evidence and impact on economic outcomes is limited., Aims: To evaluate the impact of attending a UK recovery college for students who receive a full educational intervention., Method: This is a pre- and post-intervention study, with predominantly quantitative methods. Participants recruited over an 18-month period (01.2020-07.2021) completed self-reported well-being (Short Warwick-Edinburgh Mental Wellbeing Scale (SWEMWBS)) and recovery (Process of Recovery (QPR)) surveys, and provided details and evidence of employment and educational status. Descriptive statistics for baseline data and Shapiro-Wilk, Wilcoxon signed-rank and paired t -tests were used to compare pre- and post-intervention scores, with Hedges' g -statistic as a measure of effect size. Medical records were reviewed and a brief qualitative assessment of changes reported by students was conducted., Results: Of 101 student research participants, 84 completed the intervention. Well-being (mean SWEMWBS scores 17.3 and 21.9; n = 80) and recovery (mean QPR scores 27.2 and 38.8; n = 75) improved significantly ( P < 0.001; Hedges' g of 1.08 and 1.03). The number of economically inactive students reduced from 53 (69%) to 19 (24.4%). No research participants were referred for specialist mental health support while students. 'Within-self' and 'practical' changes were described by students following the intervention., Conclusions: Findings detail the largest self-reported pre-post data-set for students attending a recovery college, and the first data detailing outcomes of remote delivery of a recovery college.

People with Intellectual Disability (ID) were more likely to contract COVID-19 infection and more likely to die from the consequences. However, there is no evidence on the long-term impact of COVID-19 infection in people with ID. Post-Covid Syndrome (PCS) is an established diagnosis that requires specialist clinical support. To date there is no data on how common PCS is in people with ID, or how symptoms present. Dysphagia is identified as a clinical marker because of the known association with PCS, and the clear objective diagnostic criteria applicable through specialist assessment. This investigation presents a cohort of people with ID, who developed dysphagia/worsening of dysphagia post diagnosis with COVID-19. Cases were identified through support from the Royal College of Speech and Language Therapists. Data was collected by electronic survey, including application of the COVID-19 Yorkshire Rehabilitation Scale-modified (C19-YRSm). The C19-YRSm is a validated assessment tool for PCS and it's impact upon functional disability. This case series identifies that symptoms consistent with PCS are present in people with ID, post-COVID-19 infection. The risk of diagnostic overshadowing or misdiagnosis is high due to the subjective nature and the quality of PCS symptoms. People with ID who develop PCS may not be readily identified by clinical services and therefore not be accessing the specialist medical support required. Furthermore, changes in behaviour secondary to PCS may lead to unnecessary increased prescribing of psychotropic medication which in itself risks worsening dysphagia. Dysphagia could be an important bellwether to identify PCS in people with ID., (© 2024. The Author(s), under exclusive licence to Springer Science+Business Media, LLC, part of Springer Nature.)

Background: One-third to half of people with intellectual disabilities suffer from chronic constipation (defined as two or fewer bowel movements weekly or taking regular laxatives three or more times weekly), a cause of significant morbidity and premature mortality. Research on risk factors associated with constipation is limited., Aims: To enumerate risk factors associated with constipation in this population., Method: A questionnaire was developed on possible risk factors for constipation. The questionnaire was sent to carers of people with intellectual disabilities on the case-loads of four specialist intellectual disability services in England. Data analysis focused on descriptively summarising responses and comparing those reported with and without constipation., Results: Of the 181 people with intellectual disabilities whose carers returned the questionnaire, 42% reported chronic constipation. Constipation was significantly associated with more severe intellectual disability, dysphagia, cerebral palsy, poor mobility, polypharmacy including antipsychotics and antiseizure medication, and the need for greater toileting support. There were no associations with age or gender., Conclusions: People with intellectual disabilities may be more vulnerable to chronic constipation if they are more severely intellectually disabled. The associations of constipation with dysphagia, cerebral palsy, poor mobility and the need for greater toileting support suggests people with intellectual disabilities with significant physical disabilities are more at risk. People with the above disabilities need closer monitoring of their bowel health. Reducing medication to the minimum necessary may reduce the risk of constipation and is a modifiable risk factor that it is important to monitor. By screening patients using the constipation questionnaire, individualised bowel care plans could be implemented.

Background: People with severe mental illness are often excluded from trials related to Eye Movement Desensitization and Reprocessing (EMDR) therapy. Principal concerns are that they may not tolerate treatment, might risk relapse or that psychotic symptoms may worsen. There is however building evidence of a traumatogenic etiology of psychotic disorder that may benefit therapeutically from EMDR. However, EMDR in this role is done mainly in specialist tertiary settings., Aim: To conduct a randomized exploratory trial of prospective treatment of EMDR for people with psychotic disorder and a history of trauma in an adult community mental health service., Methods: A randomized exploratory trial with a controlled pilot design was employed to conduct a prospective treatment and six-month follow-up study with an interim 10-week analysis in a rural county in the UK (population 538,000). We recruited participants with psychotic disorder who had a reported history of trauma and were interested in receiving trauma therapy. They were then randomized to either receive EMDR or treatment as usual (TAU). The primary instrument used was the Impact of Events Scale (IES) with secondary instruments of Positive and Negative Symptoms of Psychotic Disorder (PANSS), PTSD Checklist (PCL-C), and subjective Quality of Life (MANSA)., Results: IES scores showed significant improvements in the EMDR group (n = 24, age 42.0 SD (14.5), 42% male) compared to the TAU group (n = 12, age 34.4 SD (11.3), 50% male) at 10 weeks and at six months (p < 0.05). There were significant improvements in PCL-C and PANSS negative symptoms scores associated with treatment (p < 0.05). All other scales showed positive trends., Conclusions: This study demonstrates that EMDR can reduce the impact of traumatic events for patients with a psychotic disorder in a clinical setting in the UK. The improvements in psychotic disorder persisted for six months after treatment., Trial Registration: ISRCTN43816889., Competing Interests: Declaration of competing interest No known conflict of interest exists for any of the authors involved in this manuscript., (Copyright © 2023 The Authors. Published by Elsevier Ltd.. All rights reserved.)