Laxative use in adults with intellectual disabilities: development of prescribing guidelines.

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.

Patterns of antiseizure medications prescribing in people with intellectual disability and epilepsy: A narrative review and analysis.

People with intellectual disabilities (PwID) have a bidirectional relationship with epilepsy. Nearly 25% of PwID have seizures and 30% people with epilepsy are thought to have a significant intellectual impairment. Furthermore, 70% of PwID are thought to have treatment-resistant epilepsy. In the United Kingdom, antiseizure medications (ASMs) are the second most widely prescribed psychotropic agent for PwID. However, it is unclear what the current evidence and patterns is on current prescribing of ASMs, including when and how a case is made to withdraw them. A narrative review along with an analysis of large-scale NHS Digital published data (2015-2020) on several aspects of ASM prescribing by general practices for PwID was undertaken. The review results and data analysis are consolidated and presented as 11 themes to provide a comprehensive overview of the study topic. Recent studies estimate that one-third and one-fifth of PwID are prescribed ASMs. A history of epilepsy is seen as the primary prescribing reason; however, often it is a legacy, and the indication is no longer clear. The proportion receiving ASMs continues to rise with age. This pattern of use does not correlate well with seizure onset. There are limited data on de-prescribing ASMs in PwID. The study population heterogenicity, associated polypharmacy, multimorbidity and higher sudden unexpected death in epilepsy risks are outlined. Suggestions are made from available evidence for improving prescribing practices for PwID and seizures, and key areas for further research in this complex clinical area are outlined.

Antiseizure medications prescribing for behavioural and psychiatric concerns in adults with an intellectual disability living in England.

Antiseizure medications (ASMs) are the second most widely prescribed psychotropic for people with intellectual disabilities in England. Multiple psychotropic prescribing is prevalent in almost half of people with intellectual disabilities on ASMs. This analysis identifies limited evidence of ASM benefit in challenging behaviour management and suggests improvements needed to inform clinical practice.

Antidepressant prescribing for adult people with an intellectual disability living in England.

The prescribing of psychotropic medications for people with an intellectual disability has changed. In many locations across England, antidepressants have become the most widely prescribed psychotropic. In the context of the current NHS England STOMP programme to reduce inappropriate psychotropic prescribing for people with intellectual disability, there is an urgent need to understand whether this change reflects evidence-based use of the medications involved. There has been little analysis into the benefits or problems associated with the change and whether it is of concern. This paper offers a variety of possible explanations and opportunities to improve clinical practice and policy.

COVID-19 deaths in people with intellectual disability in the UK and Ireland: descriptive study.

BACKGROUND: Rapid spread of coronavirus disease 2019 (COVID-19) has affected people with intellectual disability disproportionately. Existing data does not provide enough information to understand factors associated with increased deaths in those with intellectual disability. Establishing who is at high risk is important in developing prevention strategies, given risk factors or comorbidities in people with intellectual disability may be different to those in the general population. AIMS: To identify comorbidities, demographic and clinical factors of those individuals with intellectual disability who have died from COVID-19. METHOD: An observational descriptive case series looking at deaths because of COVID-19 in people with intellectual disability was conducted. Along with established risk factors observed in the general population, possible specific risk factors and comorbidities in people with intellectual disability for deaths related to COVID-19 were examined. Comparisons between mild and moderate-to-profound intellectual disability subcohorts were undertaken. RESULTS: Data on 66 deaths in individuals with intellectual disability were analysed. This group was younger (mean age 64 years) compared with the age of death in the general population because of COVID-19. High rates of moderate-to-profound intellectual disability (n = 43), epilepsy (n = 29), mental illness (n = 29), dysphagia (n = 23), Down syndrome (n = 20) and dementia (n = 15) were observed. CONCLUSIONS: This is the first study exploring associations between possible risk factors and comorbidities found in COVID-19 deaths in people with intellectual disability. Our data provides insight into possible factors for deaths in people with intellectual disability. Some of the factors varied between the mild and moderate-to-profound intellectual disability groups. This highlights an urgent need for further systemic inquiry and study of the possible cumulative impact of these factors and comorbidities given the possibility of COVID-19 resurgence.

UK psychiatrists' experience of withdrawal of antipsychotics prescribed for challenging behaviours in adults with intellectual disabilities and/or autism.

BACKGROUND: A high proportion of adults with intellectual disabilities are prescribed off-licence antipsychotics in the absence of a psychiatric illness. The National Health Service in England launched an initiative in 2016, 'Stopping over-medication of people with a learning disability [intellectual disability], autism or both' (STOMP), to address this major public health concern. AIMS: To gain understanding from UK psychiatrists working with adults with intellectual disabilities on the successes and challenges of withdrawing antipsychotics for challenging behaviours. METHOD: An online questionnaire was sent to all UK psychiatrists working in the field of intellectual disability (estimated 225). RESULTS: Half of the 88 respondents stated that they started withdrawing antipsychotics over 5 years ago and 52.3% stated that they are less likely to initiate an antipsychotic since the launch of STOMP. However, since then, 46.6% are prescribing other classes of psychotropic medication instead of antipsychotics for challenging behaviours, most frequently the antidepressants. Complete antipsychotic discontinuation in over 50% of patients treated with antipsychotics was achieved by only 4.5% of respondents (n = 4); 11.4% reported deterioration in challenging behaviours in over 50% of patients on withdrawal and the same proportion (11.4%) reported no deterioration. Only 32% of respondents made the diagnosis of psychiatric illness in all their patients themselves. Family and paid carers' concern, lack of multi-agency and multidisciplinary input and unavailability of non-medical psychosocial intervention are key reported factors hampering the withdrawal attempt. CONCLUSIONS: There is an urgent need to develop national guidelines to provide a framework for systematic psychotropic drug reviews and withdrawal where possible.

Antipsychotics and hyperprolactinaemia: clinical recommendations.

A group of international experts in psychiatry, medicine, toxicology and pharmacy assembled to undertake a critical examination of the currently available clinical guidance on hyperprolactinaemia. This paper summarises the group's collective views and provides a summary of the recommendations agreed by the consensus group to assist clinicians in the recognition, clinical assessment, investigation and management of elevated plasma prolactin levels in patients being treated for severe mental illness. It also deals with the special problems of particular populations, gives advice about information that should be provided to patients, and suggests a strategy for routine monitoring of prolactin. The recommendations are based upon the evidence contained in the supplement 'Hyperprolactinaemia in schizophrenia and bipolar disorder: Clinical Implications' (2008). The guidance contained in this article is not intended to replace national guidance (such as that of the National Institute of Clinical Excellence), however, it does provide additional detail that is unlikely to be covered in existing guidelines, and focuses on areas of uncertainty and disagreement. We hope it will add to the debate about this topic.

Epilepsy in adults with intellectual disabilities: prevalence, associations and service implications.

STATEMENT OF THE PROBLEM: The prevalence of epilepsy in people with an intellectual disability (ID) is apparently higher than in the general population. The outlook for individuals with both epilepsy and ID depends on the presence of any associated conditions. However, there have been few epidemiological studies of the prevalence of epilepsy and associated problems within a representative adult ID population to inform the development of policy. METHOD: This was a population-based prevalence study using the Leicestershire Learning Disability Register. Prevalence was estimated from the number of individuals with reported epilepsy identified from structured home interviews with carers. Associations with epilepsy were investigated for a range of defined physical, mental and skill attributes. Logistic regression was done with and without adjustment for age, sex and level of understanding to identify specific and holistic links respectively. RESULTS: The prevalence of epilepsy was 26%. Among those with epilepsy, 68% experienced seizures despite anti-epileptic medication. Epilepsy showed a significant association with low levels of understanding. Specific morbid associations included wetting (adjusted odds ratio 2.7), soiling (2.2), walking (2.5), daily living skills (1.6), poor speech (2.2), lack of empathy (1.5), mood swings (1.5), being uncooperative (1.6), seeking attention (1.7) and disturbing others at night (1.9). Holistic associations included a wider range of physical and mental problems and global skills deficits. CONCLUSIONS: The high prevalence, associated morbidities and global skills deficits make epilepsy care for adults with ID important and complex. Specialist epilepsy services for this population need a multidisciplinary skills mix.