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Attention-deficit hyperactivity disorder (ADHD) is common among people with intellectual disability. Diagnosing ADHD in this clinically and cognitively complex and diverse group is difficult, given the overlapping psychiatric and behavioural presentations. Underdiagnoses and misdiagnoses leading to irrational polypharmacy and worse health and social outcomes are common. Diagnostic interviews exist, but are cumbersome and not in regular clinical use.
We aimed to develop a screening tool to help identify people with intellectual disability and ADHD.
A prospective cross-sectional study, using STROBE guidance, invited all carers of people with intellectual disability aged 18–50 years open to the review of the psychiatric team in a single UK intellectual disability service (catchment population: 150 000). A ten-item questionnaire based on the DSM-V ADHD criteria was circulated. All respondents’ baseline clinical characteristics were recorded, and the DIVA-5-ID was administered blinded to the individual questionnaire result. Fisher exact and multiple logistic regressions were conducted to identify relevant questionnaire items and the combinations that afforded best sensitivity and specificity for predicting ADHD.
Of 78 people invited, 39 responded (26 men, 13 women), of whom 30 had moderate-to-profound intellectual disability and 38 had associated comorbidities and on were medication, including 22 on psychotropics. Thirty-six screened positive for ADHD, and 24 were diagnosed (16 men, eight women). Analysis showed two positive responses on three specific questions to have 88% sensitivity and 87% specificity, and be the best predictor of ADHD.
The three-question screening is an important development for identifying ADHD in people with intellectual disability. It needs larger-scale replication to generate generalisable results.
To improve communication with patients and carers by sharing information in an easily comprehensible manner.
According to the department of health guidelines, there is legal requirement to provide copies all clinical correspondence to the patients. Therefore, after any clinic review, letters summarizing the consultation are sent out to GP and patients are copied in. However, these are not very meaningful for patients with special needs, as they struggle to comprehend information. Previous studies have shown that patients with learning disability would prefer letters in a simple language and would also like to participate in the decision making process. According to Accessible Information Standard, we have a legal obligation to deliver information to our service users in an easily understandable manner. We undertook a quality improvement pilot project of easy read templates to improve the understanding of patients and their carers/families.
A standard easy read template was co-produced after collecting feedback from different service users and clinicians. Pictures were incorporated into the questionnaire to facilitate understanding. We collected reviews over a period of 2 months from Nov 2019- Dec 2019. This proforma did not replace the routine clinic letter send out to the GP and the patients. This easy read template began with the introduction of the doctor (with photograph) and it encompassed mental health, physical health, current medication (and the benefits and side effects if any) and changes of medication. It also included epilepsy and the risks (risks to self and to others), vulnerability, behaviours of concern and the day-to-day activities that a service user engages in and finally about the plan formulated at the end of the consultation. At the same time, there was a separate form (with self-explanatory pictures), which collected feedback about the above mentioned appointment outcome review form.
Templates were handed out to 65 patients and carers, and 60 completed the form. All patients found the template useful and helpful, mainly because it was easily comprehensible, with pictures, and also “provided instant updates”.
This easy read template improves patients’ understanding and participation in the clinic review. This contributes to greater patient satisfaction. As Specialist Learning Disability services, we need to ensure that information is imparted to the patients and the carers in an easily understandable manner and this easy read template should be incorporated in the routine clinic practice.
The current audit aims to identify the gaps in the practice of administering prn buccal midazolam, for management of epilepsy in people with intellectual disability and to review training needs, with a view to improve patient care.
Convulsive status epilepticus is a medical emergency requiring admission to hospital and has a mortality as high as 20% (SUDEP -Sudden Unexpected Death in Epilepsy). It is imperative that the carers are fully aware of the risks associated with the epileptic attacks, are able to recognize the attacks and offer rescue medication to the patient in a timely and effective manner. National guidelines have been drafted jointly by ESNA (Epilepsy Specialist Nurses Association) and ILAE (International League Against Epilepsy) for prn administration of buccal midazolam. The use of rescue medication by trained carers can significantly improve the outcome and reducing the risk of hospital administration and chances of SUDEP. Buccal midazolam is widely used to manage prolonged seizures. Administration should be undertaken only by people who have received both epilepsy awareness and buccal midazolam training.
All patients with intellectual disability with epilepsy were studied and patients who were prescribed prn midazolam have been shortlisted shortlisted for data analysis. A template was designed and data are being collected from the carers, community nurses and the prescribing clinicians. Data are categorized under headings of background information about epilepsy, recognizing complications during a seizure and the ability to administer buccal midazolam. Further information about the type and the frequency of training courses (including the refresher courses) being offered to the carers for administration of buccal midazolam would also be documented. There is also data collection pertaining to the timely review of the care plan by the prescribing clinicians and the about the licenced or unlicensed used of midazolam. The quality of epilepsy awareness training is being explored in depth and also the competency of the county council nurses offering the training to the carers shall be analysed under different headings.
Data are currently being collected in Hertfordshire and Essex mental health services.
After the data analysis, the short comings shall be addressed and effective measures shall be put in place to improve the quality of training being provided to the carers and to standardise the practice for prn midazolam prescription.
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.
To identify comorbidities, demographic and clinical factors of those individuals with intellectual disability who have died from COVID-19.
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.
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.
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.
Postal questionnaires were sent out to 66 learning disability psychiatrists to assess their knowledge and experience of the Mental Capacity Act 2005.
A response rate of 55% (n = 36) was achieved; 22 (61%) respondents felt that patient care had improved; 16 (44%) felt workload had increased. Despite 79% (n = 23) of the respondents feeling that the training for the Act was adequate, only 19% (n = 7) were aware of the situations where patients had to be referred to the Independent Mental Capacity Advocate (IMCA) service and only 53% (n = 19) were aware that the Act currently does not cover patients who fall in the ‘Bournewood gap’.
Learning disability psychiatrists are still not conversant with significant parts of the Act and this raises questions about the adequacy of the training delivered. Implementing the Act should improve patient care but will have implications for the workload of professionals.
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