Online social connections and Internet use among people with intellectual disabilities in the United Kingdom during the COVID-19 pandemic.

Having a disability, in particular, an intellectual disability, is associated with Internet non-use. This article explores how people with intellectual disabilities used the Internet across the United Kingdom during the COVID-19 pandemic. In April to May 2021, 571 adults with intellectual disabilities were interviewed. Participants most commonly used the Internet for being with family and friends, social media or doing online activities with other people. People who lived with family were the most likely to use social media; people who lived with other people with intellectual disabilities were the least likely. People who self-reported as not lonely were more likely to use the Internet for online activities with others and play video games with others. Social connections were identified as the best thing about the Internet. Many participants chose not to identify a worst thing about Internet use, while others reported issues with technology, online harm and threats to well-being.

Nonuniform sliding-window reconstruction for accelerated dual contrast agent quantification with MR fingerprinting.

OBJECTIVE: MR fingerprinting (MRF) can enable preclinical studies of cell tracking by quantifying multiple contrast agents simultaneously, but faster scan times are required for in vivo applications. Sliding window (SW)-MRF is one option for accelerating MRF, but standard implementations are not sufficient to preserve the accuracy of T2*, which is critical for tracking iron-labelled cells in vivo. PURPOSE: To develop a SW approach to MRF which preserves the T2* accuracy required for accelerated concentration mapping of iron-labelled cells on single-channel preclinical systems. METHODS: A nonuniform SW was applied to the MRF sequence and dictionary. Segments of the sequence most sensitive to T2* were subject to a shorter window length, preserving the T2* sensitivity. Phantoms containing iron-labelled CD8+ T cells and gadolinium were used to compare 24× undersampled uniform and nonuniform SW-MRF parameter maps. Dual concentration maps were generated for both uniform and nonuniform MRF and compared. RESULTS: Lin's concordance correlation coefficient, compared to gold standard parameter values, was much greater for nonuniform SW-MRF than for uniform SW-MRF. A Wilcoxon signed-rank test showed no significant difference between nonuniform SW-MRF and gold standards. Nonuniform SW-MRF outperformed the uniform SW-MRF concentration maps for all parameters, providing a balance between T2* sensitivity of short window lengths, and SNR of longer window lengths. CONCLUSIONS: Nonuniform SW-MRF improves the accuracy of matching compared to uniform SW-MRF, allowing higher accelerated concentration mapping for preclinical systems.

Are Development Finance Institutions Meeting Their Human Rights Obligations in Health?

The right to the highest attainable standard of health is a fundamental right of every human being without distinction as to race, religion, political belief, or economic or social condition.1 Spent wisely, aid and other forms of government spending are essential for attaining this right, as well as driving development. However, taxpayer funds from high-income governments such as the UK, France, and Germany are increasingly being funneled through development finance institutions (DFIs) toward multi-million-dollar investments in for-profit health care corporations in low- and middle-income countries. This contributes to the corporatization and financialization of health care in these contexts and is implicated in profiteering and exploitation, the denial of treatment to those who cannot afford it, and a range of human rights abuses-all with little or no accountability. This paper examines the human rights obligations of a sample of European DFIs and the International Finance Corporation, drawing on the "availability, accessibility, acceptability, and quality" right to health framework. We find that this investment approach is not only limiting the realization of the fundamental right to health for all but also placing significant barriers to accessing quality, affordable health services.2.

Developing curricular-content and systems-related impact indicators for intellectual disability awareness training for acute hospital settings: A modified International Delphi Survey.

AIM: To identify, and reach consensus on, curricular-content and delivery methods, as well as ways to maximize the impact of intellectual disability awareness training programmes in acute hospital settings. BACKGROUND: With the continuing evidence of avoidable deaths and unwarranted variations in the quality of care to people with an intellectual disability in acute hospitals, it could be purported that current training provided to hospital staff appears to be making a minimal difference in the care provided to this population. DESIGN: A two-round modified Delphi survey was conducted between June 2020-January 2021. METHODS: International experts from primary healthcare and hospital settings, and intellectual disability health fields participated in the survey. Initial curricular-content items were developed from the literature, and based on the combined clinical and academic experience base of the authors. Items were evaluated in terms of agreement/consensus, importance and stability of responses. There were 57 expert responses in Round 1 and 45 in Round 2. RESULTS: The consensus was reached with regard to 55 of 65 curricular-content indicators relating to Aims, Design, Content and Delivery. Ten curricular-content indicators failed to be agreed on relating to the mode of training delivery. With regard to systems-related impact indicators, 28 out of 31 reached consensus. The expert panel identified and agreed on seven system barriers that could obstruct the successful implementation of the awareness training programmes in acute hospital settings. CONCLUSIONS: This is the first international Delphi survey to agree on curricular-content and identify systems-related facilitators for intellectual disability awareness training. Potential system barriers have been highlighted which could be addressed by systemic improvement. Implications for developing, and robustly testing the efficacy of, intellectual disability awareness training programmes are discussed, as are the implications for other cognitively impaired populations. IMPACT: In order to maximize the impact, investment in acute hospital staff education will need to be accompanied by wider changes to systems and structures concerning the governance of service provision for people with an intellectual disability.

Simultaneous quantification of SPIO and gadolinium contrast agents using MR fingerprinting.

PURPOSE: Develop a magnetic resonance fingerprinting (MRF) methodology with R2∗ quantification, intended for use with simultaneous contrast agent concentration mapping, particularly gadolinium (Gd) and iron labelled CD8+ T cells. METHODS: Variable-density spiral SSFP MRF was used, modified to allow variable TE, and with an exp.(-TE·R2∗) dictionary modulation. In vitro phantoms containing SPIO labelled cells and/or gadolinium were used to validate parameter maps, probe undersampling capacity, and verify dual quantification capabilities. A C57BL/6 mouse was imaged using MRF to demonstrate acceptable in vivo resolution and signal at 8× undersampling necessary for a 25-min scan. RESULTS: Strong agreement was found between conventional and MRF-derived values for R1, R2, and R2∗. Expanded MRF allowed quantification of iron-loaded CD8+ T cells. Results were robust to 8× undersampling and enabled recreation of relaxation profiles for both a Gd agent and iron labelled cells simultaneously. In vivo data demonstrated sufficient SNR in undersampled data for parameter mapping to visualise key features. CONCLUSION: MRF can be expanded to include R1, R2, and R2∗ mapping required for simultaneous quantification of gadolinium and SPIO in vitro, allowing for potential implementation of a variety of future in vivo studies using dual MR contrast agents, including molecular imaging of labelled cells.

Improving access to screening for people with learning disabilities.

People with learning disabilities have poorer health than their non-disabled peers, and are less likely to access screening services than the general population. The National Development Team for Inclusion and the Norah Fry Research Centre developed a toolkit and guidance to improve uptake of five national (English) screening programmes (one of which is delivered through local programmes), based on work to improve access by people with learning disabilities in the south west peninsula of the UK. This article describes the findings in relation to the five English screening programmes and suggests ways to improve uptake of cancer screening by people with learning disabilities.

The Confidential Inquiry into premature deaths of people with intellectual disabilities in the UK: a population-based study.

BACKGROUND: The Confidential Inquiry into premature deaths of people with intellectual disabilities in England was commissioned to provide evidence about contributory factors to avoidable and premature deaths in this population. METHODS: The population-based Confidential Inquiry reviewed the deaths of people with intellectual disabilities aged 4 years and older who had been registered with a general practitioner in one of five Primary Care Trust areas of southwest England, who died between June 1, 2010, and May 31, 2012. A network of health, social-care, and voluntary-sector services; community contacts; and statutory agencies notified the Confidential Inquiry of all deaths of people with intellectual disabilities and provided core data. The Office for National Statistics provided data about the coding of individual cause of death certificates. Deaths were described as avoidable (preventable or amenable), according to Office for National Statistics definitions. Contributory factors to deaths were identified and quantified by the case investigator, verified by a local review panel meeting, and agreed by the Confidential Inquiry overview panel. Contributory factors were grouped into four domains: intrinsic to the individual, within the family and environment, care provision, and service provision. The deaths of a comparator group of people without intellectual disabilities but much the same in age, sex, and cause of death and registered at the same general practices as those with intellectual disabilities were also investigated. FINDINGS: The Confidential Inquiry reviewed the deaths of 247 people with intellectual disabilities. Nearly a quarter (22%, 54) of people with intellectual disabilities were younger than 50 years when they died, and the median age at death was 64 years (IQR 52-75). The median age at death of male individuals with intellectual disabilities was 65 years (IQR 54-76), 13 years younger than the median age at death of male individuals in the general population of England and Wales (78 years). The median age at death of female individuals with intellectual disabilities was 63 years (IQR 54-75), 20 years younger than the median age at death for female individuals in the general population (83 years). Avoidable deaths from causes amenable to change by good quality health care were more common in people with intellectual disabilities (37%, 90 of 244) than in the general population of England and Wales (13%). Contributory factors to premature deaths in a subset of people with intellectual disabilities compared with a comparator group of people without intellectual disabilities included problems in advanced care planning (p=0·0003), adherence to the Mental Capacity Act (p=0·0008), living in inappropriate accommodation (p<0·0001), adjusting care as needs changed (p=0·009), and carers not feeling listened to (p=0·006). INTERPRETATION: The Confidential Inquiry provides evidence of the substantial contribution of factors relating to the provision of care and health services to the health disparities between people with and without intellectual disabilities. It is imperative to examine care and service provision for this population as potentially contributory factors to their deaths--factors that can largely be ameliorated. FUNDING: Department of Health for England.

Patient and caregiver perspectives of quality of life in dementia. An investigation of the relationship to behavioural and psychological symptoms in dementia.

BACKGROUND/AIMS: Behavioural and psychological symptoms have a high prevalence amongst patients with dementia and can be a significant source of distress to both patients and carers. The present study explored the relationships between quality of life and behavioural and psychological symptoms in dementia (BPSD) from both patient and carer perspectives. Contextual factors surrounding the occurrence of BPSD were explored. METHODS: Forty-six patients and 116 carers completed questionnaire measures of BPSD and quality of life. RESULTS: BPSD were negatively associated with both patient and carer ratings of patient quality of life. The symptoms related to lower quality of life differed between patient and carer ratings: depression and irritability were found to predict lower carer ratings of quality of life, whilst delusions and apathy indicated lower patient ratings. Carers were found to be poor at identifying antecedents and consequences of BPSD. CONCLUSIONS: The presence of BPSD is associated with lower quality of life in dementia. Interventions designed to improve the quality of life for patients should focus on the BPSD specifically associated with the patient's rating of quality of life. Information regarding the role of contextual factors in behaviour management should be made available to carers.

Consistency of neuropsychiatric syndromes across dementias: results from the European Alzheimer Disease Consortium. Part II.

BACKGROUND/AIMS: The aim of this study was to determine the consistency of neuropsychiatric subsyndromes of the Neuropsychiatric Inventory across several clinical and demographic subgroups (e.g. dementia subtypes, dementia severity, medication use, age and gender) in a large sample of outpatients with dementia. METHODS: Cross-sectional data of 2,808 patients with dementia from 12 centres from the European Alzheimer's Disease Consortium were collected. Principal component analysis was used for factor analysis. Subanalyses were performed for dementia subtypes, dementia severity, medication use, age and gender. RESULTS: The results showed the relatively consistent presence of the 4 neuropsychiatric subsyndromes 'hyperactivity', 'psychosis', 'affective symptoms' and 'apathy' across the subanalyses. The factor structure was not dependent on dementia subtypes, age and gender but was dependent on dementia severity and cholinesterase use. The factors hyperactivity and affective symptoms were present in all subanalyses, but the presence of the factors apathy and psychosis was dependent on use of cholinesterase inhibitors and dementia severity, respectively. CONCLUSION: The present study provided evidence of the relative consistency of neuropsychiatric subsyndromes across dementia subtypes, age and gender, thereby stressing the importance of thinking about neuropsychiatric subsyndromes instead of separate symptoms. However, the subsyndromes apathy and psychosis were dependent on use of cholinesterase inhibitors and dementia severity.

Neuropsychiatric syndromes in dementia. Results from the European Alzheimer Disease Consortium: part I.

BACKGROUND/AIMS: The aim of this study was to identify neuropsychiatric subsyndromes of the Neuropsychiatric Inventory in a large sample of outpatients with Alzheimer's disease (AD). METHODS: Cross-sectional data of 2,354 patients with AD from 12 centres from the European Alzheimer's Disease Consortium were collected. Principal component analysis was used for factor analysis. RESULTS: The results showed the presence of 4 neuropsychiatric subsyndromes: hyperactivity, psychosis, affective symptoms and apathy. The subsyndrome apathy was the most common, occurring in almost 65% of the patients. CONCLUSION: This large study has provided additional robust evidence for the existence of neuropsychiatric subsyndromes in AD.