The inclusion of adults with intellectual disabilities in health research - challenges, barriers and opportunities: a mixed-method study among stakeholders in England.

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.

Clinical characteristics of people with intellectual disability admitted to hospital with constipation: identifying possible specific high-risk factors.

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.

Rapid switching from levetiracetam to brivaracetam in pharmaco-resistant epilepsy in people with and without intellectual disabilities: a naturalistic case control study.

BACKGROUND: Approximately one quarter of people with an intellectual disability (PwID) have epilepsy of whom nearly three-quarters are pharmaco-resistant. There are higher reported neuropsychiatric side-effects to anti-seizure medication (ASM) in this group. Levetiracetam (LEV) is a first-line ASM with a stronger association with neuropsychiatric symptoms for PwID than other ASMs. Brivaracetam (BRV) is a newer ASM. Recent studies suggest a beneficial effect of swapping people who experience neuropsychiatric events with LEV to BRV. However, there is limited evidence of this for PwID. This evaluation analyses real world outcomes of LEV to BRV swap for PwID compared to those without ID. METHODS: We performed a multicentre, retrospective review of clinical records. Demographic, clinical characteristics and reported adverse events of patients switched from LEV to BRV (2016-2020) were recorded at 3 months pre and 6- and 12-month post-BRV initiation. Outcomes were compared between PwID and those without and summarised using cross-tabulations and logistic regression models. A Bonferroni correction was applied. RESULTS: Of 77 participants, 46 had ID and 52% had a past psychiatric illness. 71% participants switched overnight from LEV to BRV. Seizure reduction of > 50% was seen in 40% patients. Psychiatric illness history was predictive of having neuropsychiatric side-effects with LEV but not BRV (p = 0.001). There was no significant difference for any primary outcomes between PwID versus without ID. CONCLUSIONS: Switching from LEV to BRV appears as well tolerated and efficacious in PwID as those without ID with over 90% still on BRV after 12 months.

An evidence-based approach to provide essential and desirable components to develop surveys on Sudden Unexpected Death in Epilepsy (SUDEP) for doctors: A focused review.

Sudden Unexpected Death in Epilepsy (SUDEP) is a major concern for people with epilepsy, their families, their care givers, and medical professionals. There is inconsistency in the SUDEP counselling doctors provide, compared to what is recommended in clinical guidelines. Numerous national and international surveys have highlighted how epilepsy professionals, usually doctors, deliver SUDEP risk counselling, particularly, when they deliver it and to whom. These surveys help understand the unmet need, develop suitable strategies, and raise awareness among clinicians with the eventual goal to reduce SUDEPs. However, there is no standardised survey or essential set of questions identified that can be used to evaluate SUDEP counselling practice globally. This focused review analyses the content of all published SUDEP counselling surveys for medical professionals (n=16) to date covering over 4000 doctors across over 30 countries and five continents. It identifies 36 question themes across three topics. The questions are then reviewed by an expert focus group of SUDEP communication experts including three doctors, an expert statistician and SUDEP Action, an UK based charity specialising in epilepsy deaths with a pre-set criterion. The review and focus group provide ten essential questions that should be included in all future surveys inquiring on SUDEP counselling. They could be used to evaluate current practice and compare findings over time, between services, across countries and between professional groups. They are provided as a template to download and use. The review also explores if there is a continued need in future for similar surveys to justify this activity.

Decreasing the risk of sudden unexpected death in epilepsy: structured communication of risk factors for premature mortality in people with epilepsy.

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.

The cardiovascular and respiratory health of people with schizophrenia.

OBJECTIVE: To examine the cardiovascular and respiratory health of people with severe mental illness (SMI) and compare findings with the Health Surveys for England. METHOD: A prospective, multi-centre observational prevalence study of 602 patients with schizophrenia-related psychoses carried out in six locations across the UK over 24 months. RESULTS: Compared with general population subjects, people with SMI reported higher rates of angina and respiratory symptoms and had poor lung function. Much of this increased risk could be explained by lifestyle risk factors; there were increased levels of obesity among younger people with SMI. CONCLUSION: Key indicators of the cardiovascular and respiratory health of people with SMI are poor compared with those of the general population. Care plans should prioritize interventions to attenuate lifestyle risk factors. Evidence of increasing obesity in younger patients is of particular concern, predicting even greater health needs in the future.

Maintenance antipsychotic medication patterns in outpatient schizophrenia patients: a naturalistic cohort study.

OBJECTIVE: Newer antipsychotics are increasingly used in schizophrenia maintenance. The UK change has been slow with little known on switching patterns. We aimed to investigate antipsychotic prescribing patterns in schizophrenia patients. METHOD: A naturalistic six-site cohort sample of 600 patients were interviewed by researchers at 6-monthly intervals for 2 years to record their clinical and social functioning; use of services and medication for the preceding 6 months was obtained by structured extraction from clinical case notes. RESULTS: Alterations in antipsychotic medication were frequent in this group, mainly during periods of inpatient care. Atypical prescribing increased steadily, though slowly, across the period. Polypharmacy was less than anticipated. CONCLUSION: Inpatient care remains the main forum for switching of antipsychotics. The UK maintains a slow shift to atypical antipsychotics.

Previous help sought by patients presenting to mental health services in Kumasi, Ghana.

OBJECTIVE: There are four services providing mental health care to the people of Kumasi, Ghana. This study aimed to identify previous help sought by patients presenting to the services for an initial assessment. METHOD: New patients presenting to each of the four services were asked about distance travelled, previous help sought and time since symptoms of illness started. Staff also recorded basic demographic details and clinical diagnoses. RESULTS: Of the 322 patients presenting to the four sites,only 6% had seen a traditional healer whereas 14% had seen a pastor before presentation. There was a greater delay in presenting to that service if the patient had seen a traditional healer or pastor. Many patients had previously used one of the other mental health units in Kumasi. CONCLUSION: It is possible that fewer patients with mental health problems present to traditional healers in modern, urban Africa compared to rural areas. More patients consult with pastors than traditional healers and liaison with these groups may improve mental health care. It is important to maintain liaison between the four services as patients presenting to one clinic may have presented previously to another local clinic.

The effect of alcohol consumption on cost of care in severe psychotic illness: a report from the UK700 study.

OBJECTIVE: Alcohol misuse in psychotic patients is common and leads to poor treatment outcome. This study examines the relationship between alcohol consumption and cost of care in patients with a severe psychotic illness. METHOD: Patient care was evaluated over 2 years for 708 patients. Patient reported alcohol consumption was evaluated at initial interview. The outcome measure was cost of care over 2 years. RESULTS: There was no difference in mean cost of care between non-drinkers, moderate and heavy drinkers. Increased alcohol consumption (measured as a continuous variable, adjusted for baseline characteristics) was associated with lower cost of care. CONCLUSION: Heavier alcohol consumers did not incur more treatment costs and may, indeed, cost less than other patients. This may reflect higher levels of drinking being associated with better overall functioning, poorer engagement with services or exclusion from services.

Patient held clinical information for people with psychotic illnesses.

BACKGROUND: It is important to seek cost-effective methods of improving the care and outcome of those with serious mental illnesses. Patient-held records, where the person with the illness holds all or some personal information relating to the course and care of their illness, are now the norm in some clinical settings. Their value for those with serious mental illnesses is unknown. OBJECTIVES: To evaluate the effects of personalised and accessible patient-held clinical information for people with a diagnosis of psychotic illness. SEARCH STRATEGY: Electronic searches of AMED (1980-1998), Biological Abstracts (1985-1998), British Nursing Index (1994-1998), CAB (1973-1999), CINAHL (1982-1999), The Cochrane Controlled Trials Register (Issue 1, 1999), EMBASE (1980-1999), HEALTHSTAR (1990-1999), HMIC (King's Fund Database 1979-1998 & HELMIS 1984-1998), MEDLINE (1966-1999), PsycLIT (1887-1999), Royal College of Nursing Database (1985-1996), SIGLE (1990-1998), Sociological Abstracts (1963-1998) and the Internet (http://www. controlled-trials.com/) were undertaken. This was supplemented by personal contact with the Executive Board of the European Network for Mental Health Service Evaluation. SELECTION CRITERIA: The inclusion criteria were that studies should: i. be randomised or quasi-randomised trials; ii. have involved adults with a diagnosis of a psychotic illness; and iii. compare any personalised and accessible clinical information held by the patient beyond standard care to standard information routinely held such as appointment cards and generic information on diagnosis, treatment or services available. DATA COLLECTION AND ANALYSIS: Study selection and data extraction was reliability undertaken. Analysis was not possible. MAIN RESULTS: Not one study met the inclusion criteria for the review. One study (Stafford 1997) was found on the use of client held records for people with long term mental illness but the participants had not been randomised. Two important randomised studies (Lester 1999, Papageorgiou 1999) are ongoing. REVIEWER'S CONCLUSIONS: There is a gap in the evidence regarding patient-held, personalised, accessible clinical information for people with psychotic illnesses. It cannot be assumed that patient-held information is beneficial or cost-effective without evidence from well planned, conducted and reported randomised trials.