Moving Ahead: Factors contributing to successful transition of people with intellectual disabilities from congregated to community-based residential options in two regions in Ireland

This report details the findings of a research project entitled Moving Ahead. The project aimed to examine factors that contribute to the successful transfer of people with intellectual disabilities from congregated to community-based living in two regional areas in Ireland. It was undertaken by a team of researchers from Ireland and the UK, led by Dr. Christine Lineha

Mapping the National Disability Policy Landscape

This report was undertaken as part of the Moving Ahead project, a research study that aimed to examine the role of factors that contribute to the successful transfer of residents with intellectual disabilities from congregated to community-based living arrangements in two regional areas in Ireland. The study was undertaken by a team of researchers from Ireland and the UK, led by Trinity College Dublin

Living Arrangement Options for People with Intellectual Disabilities: A Scoping Review

This is one of a pair of reports prepared for the Moving Ahead Project. Its partner policy review, Mapping the National Intellectual Disability Landscape (Linehan et al., 2014), outlines current disability services, practices and policies in Ireland. This rapid scoping review provides a brief overview of national and international research exploring living arrangement options for people with intellectual disabilities

Behavioural disorder in people with an intellectual disability and epilepsy: a report of the Intellectual Disability Task Force of the Neuropsychiatric Commission of ILAE

The management and needs of people with intellectual disability (ID) and epilepsy are well evidenced; less so, the comorbidity of behavioural disorder in this population. ‘Behavioural disorder’ is defined as behaviours that are difficult or disruptive, including stereotypes, difficult or disruptive behaviour, aggressive behaviour toward other people, behaviours that lead to injury to self or others, and destruction of property. These have an important link to emotional disturbance. This report, produced by the Intellectual Disability Task Force of the Neuropsychiatric Commission of the ILAE, aims to provide a brief review of some key areas of concern regarding behavioural disorder among this population, and proposes a range of research and clinical practice recommendations generated by Task Force members. The areas covered in this report were identified by experts in the field as being of specific relevance to the broad epilepsy community when considering behavioural disorder in persons with epilepsy and ID; they are not intended to be exhaustive. The practice recommendations are based on the authors’ review of the limited research in this field combined with their experience supporting this population. These points are not graded but can be seen as expert opinion guiding future research and clinical practice

Designing technology tools to support engagement in mindfulness-based interventions: an analysis of teacher and student experiences

Standard mindfulness-based interventions have significant at-home assignments of formal mindfulness practice as a key component. Engagement with formal home practice has been correlated with treatment outcomes, but participants often complete less than the assigned amounts. Here, we explore the requirements for technology tools that can support and encourage home practice, in a way that is appropriate and consistent with the core principles of mindfulness-based interventions. Interviews were held with a group of five highly experienced mindfulness teachers and a group of five participants who had previously completed an eight-week course. Data was subjected to thematic analysis. A key finding was that providing teachers with information on how students practice could support communication around difficulties with home practice. We also identified questions around the appropriateness of adapting the course in response to participant difficulties and participant preferences. Both teachers and students made numerous suggestions for ways to augment their training using technology, such as via practice reminders and provision of teacher-specific content. Finally, a major design issue for technology developers is how to support participants in reflecting on their experiences of mindfulness practice, and subsequent learning, but not to critically evaluate their practice

Characteristics of Children Prescribed Antipsychotics: Analysis of Routinely Collected Data

Objective: Antipsychotics are licensed for psychosis and are also prescribed for behavior control. This study aims to examine characteristics and outcomes of children prescribed antipsychotics. Methods: A cohort study using general practice and hospital records linked with education records for 1,488,936 children living in Wales between 1999 and 2015. The characteristics of the children who were prescribed antipsychotics are presented using descriptive statistics and outcomes such as respiratory illness, diabetes, and injury were analyzed using multilevel logistic regression and the prior event rate ratio (PERR). Results: Children with intellectual difficulty/autism were more likely to be prescribed antipsychotics (2.8% have been prescribed an antipsychotic [75% with autism] compared with 0.15% of children without intellectual difficulty). Those with intellectual disabilities/autism were prescribed antipsychotics at a younger age and for a longer period. Antipsychotic use was associated with a higher rate of respiratory illness for all (PERR of hospital admission: 1.55 [95% CI: 1.51–1.598] or increase in rate of 2 per 100 per year in those treated), and for those with intellectual difficulty/autism, there was a higher rate of injury and hospitalized depression. However, among those without intellectual difficulty/autism, there were lower rates of depression (PERR: 0.55 [95% CI: 0.51–0.59]). Conclusions: This work shows real-world use of antipsychotics and provides information on the rate of possible adverse events in children treated. Antipsychotics are predominantly used for those with intellectual difficulty/autism rather than those with a psychotic diagnosis. There is evidence that rates of respiratory disease, epilepsy, and diabetes are also higher postantipsychotic use for all. In those with intellectual difficulty/autism, hospital-admitted depression and injury are higher postantipsychotic use. The use of antipsychotics for behavioral management is likely to have increased cost implications to the healthcare system

Advance Directives for Patients With Breast Cancer: Applying the Right Info/Right Care/Right Patient/Right Time Oncology Model

Background Advance directives (AD) are an important component of life care planning for patients undergoing treatment for cancer; however, there are few effective interventions to increase AD rates. In this quality improvement project, the authors integrated AD counseling into a novel right info/right care/right patient/right time (4R) sequence of care oncology delivery intervention for breast cancer patients in an integrated health care delivery system. Methods The authors studied two groups of patients with newly diagnosed breast cancer who attended a multidisciplinary clinic and underwent definitive surgery at a single facility. The usual care (UC) cohort (N = 139) received care from October 1, 2019 to September 30, 2020. The 4R cohort (N = 141) received care from October 1, 2020 to September 30, 2121 that included discussing AD completion with a health educator prior to surgery. The authors used bivariate analyses to assess whether the AD intervention increased AD completion rates and to identify factors influencing AD completion. Results The UC and 4R cohorts were similar in age, gender, race/ethnicity, interpreter need, Elixhauser comorbidity index, National Comprehensive Cancer Network distress score ≥ 5, surgery type, stage, histology, grade, and Estrogen receptor/Progesterone receptor/ human epidermal growth factor receptor 2 (ER/PR/HER2) status. AD completion rates prior to surgery were significantly higher for the 4R vs UC cohort (73.8%, 95% confidence interval [CI] [66.5%-81.0%] vs 15.1%, 95% CI [9.2%-21.1%], p \u3c .01) and did not significantly differ by age, race, need for interpreter, or distress scores. Conclusion Incorporation of a health educator discussion into a 4R care sequence plan significantly increased rates of time-sensitive AD completion

Multi-Institutional experience with FOLFIRINOX in pancreatic adenocarcinoma

Combination chemotherapy with FOLFIRINOX (oxaliplatin, irinotecan, fluorouracil, and leucovorin) was shown to be effective in a large phase III trial. The purpose of this study was to examine the tolerance and effectiveness of FOLFIRINOX as practiced outside of the confines of a clinical trial and to document any dose modifications used by practicing oncologists. Data on patients with all stages of pancreatic adenocarcinoma treated with FOLFIRINOX at three institutions was analyzed for efficacy, tolerance, and use of any dose modifications. Total of 61 patients was included in this review. Median age was 58 years (range: 37 to 72 years), 33 were male (54.1%) and majority had ECOG performance of 0 or 1 (86.9%, 53 patients). Thirty-eight (62.3%) had metastatic disease, while 23 (37.7%) were treated for locally advanced or borderline resectable disease. Patients were treated with a median number of four cycles of FOLFIRINOX, with dose modifications in 58.3% (176/302) of all cycles. Ten patients had stable disease (16.4%), four had a partial response (6.6%) while eight had progressive disease (13.1%) on best imaging following therapy. Median progression-free survival and overall survival were 7.5 months and 13.5 months, respectively. The most common grade 3-4 adverse event was neutropenia at 19.7% (12 cases), with 4.9% (3 cases) rate of febrile neutropenia. Twenty-one patients (34.4%) were hospitalized as a result of therapy but there were no therapy-related deaths. Twenty-three (37.7%) had therapy eventually discontinued as a result of adverse events. Despite substantial rates of adverse events and use of dose modifications, FOLFIRINOX was found to be clinically effective in both metastatic and non-metastatic patients. Regimen toxicity did not detract from overall response and survival

Smartphone monitoring of participants' engagement with home practice during mindfulness-based stress reduction: Observational study

Background: Standardized mindfulness training courses involve significant at-home assignments of meditation practice. Participants’ self-reported completion of these assignments has been correlated with treatment outcomes, but self-reported data are often incomplete and potentially biased. In addition, mindfulness teachers typically suggest that participants set aside a regular practice time, preferably in the morning, but the extent to which participants do this has not been empirically examined. Objective: This study aimed to analyze patterns of participant engagement with home practice in a mindfulness-based stress reduction course. Methods: We used a novel smartphone app to provide 25 participants with access to their daily practice assignments during the 8-week course. We analyzed data collected through our smartphone app to determine usage and listening patterns and performed analyses of the regularity and frequency of participant behavior. Results: We found that participants listened to a median of 3 of the 6 practice sessions per week, and they did not typically set aside a regular daily practice time. Across weekdays, participants practiced most frequently in the morning, but there was considerable variation in participants’ practice start times. On weekends, the peak practice time was in the evening. Conclusions: We suggest that it is feasible to integrate a smartphone-monitoring approach into existing mindfulness interventions. High-frequency smartphone monitoring can provide insights into how and when participants complete their homework, information that is important in supporting treatment engagement

COVID-19 IDD: A global survey exploring the impact of COVID-19 on individuals with intellectual and developmental disabilities and their caregivers

Background: This protocol outlines research to explore the impact of coronavirus disease 2019 (COVID-19) on individuals who have intellectual and developmental disabilities and their caregivers. Evidence suggests that people with intellectual and developmental disabilities experience disparities in healthcare access and utilisation. This disparity was evident early in the pandemic when discussions arose regarding the potential exclusion of this population to critical care. Methods: An anonymous online survey will be conducted with caregivers, both family members and paid staff, to explore the impact of COVID-19 on this population in terms of demographics, living arrangements, access to services, the impact of social distancing, and also carer wellbeing. The survey will be developed by the research team, many of whom are experts in intellectual disability within their own jurisdictions. Using back-translation our team will translate the survey for distribution in 16 countries worldwide for international comparison. The survey team have extensive personal and professional networks in intellectual disability and will promote the survey widely on social media with the support of local disability and advocacy agencies. Statistical descriptive and comparative analyses will be conducted. Ethical approval has been obtained for this study from University College Dublin’s Human Research Ethics Committee (HS-20-28-Linehan). Dissemination: Study findings will be prepared in a number of formats in order to meet the needs of different audiences. Outputs will include academic papers, lessons learned paper, practice guidelines, reports, infographics and video content. These outputs will be directed to families, frontline and management delivering disability services, national-level policy makers, healthcare quality and delivery authorities, national pandemic organisations and international bodies