Definition, assessment and management of frailty for people with intellectual disabilities: A scoping review.

© 2024 The Authors. Journal of Applied Research in Intellectual Disabilities published by John Wiley & Sons Ltd. This is an open access article distributed under the terms of the Creative Commons Attribution License (CC BY), https://creativecommons.org/licenses/by/4.0/Background: People with intellectual disabilities may experience frailty earlier than the general population. This scoping review aimed to investigate how frailty is defined, assessed, and managed in adults with an intellectual disability; factors associated with frailty; and the potential impact of COVID-19 on frailty identification and management. Method: Databases were searched from January 2016 to July 2023 for studies that investigated frailty in individuals with intellectual disabilities. Results: Twenty studies met the inclusion criteria. Frailty prevalence varied between 9% and 84%. Greater severity of intellectual disability, presence of Down syndrome, older age, polypharmacy, and group home living were associated with frailty. Multiagency working, trusted relationships and provision of evidence-based information may all be beneficial in frailty management. Conclusion: Frailty is common for people with intellectual disabilities and is best identified with measures specifically designed for this population. Future research should evaluate interventions to manage frailty and improve lives.Peer reviewe

Use of the Strengths & Difficulties Questionnaire to identify treatment needs in looked after children referred to CAMHS

© The Author(s) 2019Background: In England and Wales, the Strengths & Difficulties Questionnaire (SDQ) is used to assess and monitor looked after children’s (LAC) mental health; and some targeted CAMHS teams use it to decide who can access services. However, the ability of the single-informant SDQ to identify LAC who need mental health treatment is insufficiently understood. Methods: 144 LAC referrals to a Targeted CAMHS Team were screened as part of a larger study. To establish how well the SDQ identified children who required treatment, Total Difficulties Scores (TDS) from single-informant SDQs submitted at referral were compared to treatment recommendations following routine CAMHS assessment in a real-world setting. To explain the results, clinicians (n=9) from the team were interviewed and key themes identified using Thematic Analysis. Results: Optimal accuracy calculations for SDQs completed by carers (TDS=17, sensitivity .67, specificity .57), teachers (TDS=17, sensitivity .79, specificity .71) and young people (TDS=14, sensitivity.79, specificity .42) compared to the outcome of routine CAMHS assessments indicated that the number of children whose treatment needs were not identified by their SDQ score may be unacceptably high. Key themes from clinician interviews identified possible gaps and limitations: Developmental Trauma and Attachment Difficulties, A different kind of ‘patient?’, Seeing the bad but neglecting the sad, and The importance of clinical judgement. Conclusions: Contrary to UK Government policy, this study suggests that the single-report SDQ should not be relied upon as a sole means of identifying mental health difficulties in this vulnerable, high-risk population.Peer reviewedFinal Accepted Versio

Study to investigate the effectiveness of using a humanoid robot (Kaspar) to improve the social skills of children with an Autism Spectrum Disorder: a randomised controlled feasibility trial

Peer reviewe

Morphine Analgesia Pre-PPCI Is Associated with Prothrombotic State, Reduced Spontaneous Reperfusion and Greater Infarct Size

Schattauer GmbH Stuttgart.The emergency management of ST-elevation myocardial infarction (STEMI) involves treatment with dual-antiplatelet therapy (DAPT) and primary percutaneous coronary intervention (PPCI). Pain is generally treated with opiates, which may delay gastric transit and reduce DAPT absorption. We sought to assess the effect of morphine on reperfusion, infarct size and thrombotic status in 300 patients presenting for PPCI. Morphine was given in a non-randomized fashion as required by emergency teams en route to the heart attack centre. All patients received DAPT and PPCI according to standard care, with optional glycoprotein IIb/IIIa inhibitor (GPI) use. Patients were assessed for ST-segment resolution, coronary flow, thrombotic status and peak troponin. Patients receiving morphine (n = 218; 72.7%) experienced less spontaneous ST-segment resolution pre-PPCI, lower rate of TIMI 2/3 flow in the infarct-related artery pre-PPCI and higher peak troponin level post-PPCI (median [interquartile range]; 1,906 [1,002-4,398] vs. 1,268 [249-2,920] ng/L; p = 0.016) than those who did not. Patients receiving morphine exhibited significantly enhanced platelet reactivity and impaired endogenous fibrinolysis on arrival, compared with no-morphine patients. Morphine administration was an independent predictor of failure of spontaneous ST-segment resolution after adjustment for other variables (odds ratio: 0.26; confidence interval: 0.08-0.84; p = 0.025). Among patients receiving GPI, there was no difference in pre-PPCI flow or peak troponin according to morphine use, suggesting that the adverse effects of morphine relate to delayed DAPT absorption, which may be overcome by GPI. Our hypothesis-generating data suggest that morphine use in STEMI is associated with enhanced platelet reactivity, reduced spontaneous myocardial reperfusion (pre-PPCI) and larger infarct size, and these adverse effects may be influenced by GPI use. CLINICAL TRIAL REGISTRATION:  URL: http://www.clinicaltrials.gov. Unique identifier: NCT02562690.Peer reviewedFinal Accepted Versio

Facing loss and finding hope in narrating together: Accounts of parenthood following the death of a child to muscular dystrophy

© The Author(s) 2021. This article is distributed under the terms of the Creative Commons Attribution 4.0 License (https://creativecommons.org/licenses/by/4.0/).Muscular dystrophy is a terminal muscle-wasting condition, whereby families face continuous challenges as their child’s health deteriorates. This research explored accounts of parenthood following bereavement of their child to muscular dystrophy. Narrative inquiry was used to analyse interviews with four couples. Findings suggest an importance in narrating adversities (waking up to different futures) and positive influence (creating legacies). The research highlighted how humour is often used to support others to witness painful accounts (humour through the struggle). Parents appeared to co-regulate the painfulness of narrating loss (storytelling together). Further research is needed on conjoint narrative interviews and how these may enable participants to address shared loss experiences. Practitioners who support bereaved parents could consider the potential value highlighted in this study of meeting with parents conjointly, which include that, through co-regulatory, collaborative processes, families seemed to be supported to reach narrative cohesion, sensitively and safely, when facing loss and bereavement.Peer reviewedFinal Published versio

Patient Reported Experience of Kidney Care in the UK 2019

We are pleased to present the 2019 Kidney Patient Reported Experience Measure report (Kidney PREM). Following the initial pilot in 2016, involving over 8,000 people living with kidney disease, participation has continued to grow and the measure is now collected right across the UK and the number of responses has doubled with over 16,000 patients giving their views on their care experience.This unique source of data has been recognised and used throughout the renal community as the international drive for person-centred outcome data across the healthcare system gains momentum. The UK Kidney community is proud to be a part of this international work towards better understanding and improving patient experience.More importantly, our vision of the Kidney PREM is that it is used as a driver for change at a local level. We know the top-level scores are not the full story and that improvement, particularly around the three lower scoring themes - shared decision making, transport and needling - is complicated. There are no easy answers, however, there are some centres who are getting it right and we would like to better understand why this is and what they are doing that could be shared. The working group behind delivering the Kidney PREM continues to work hard to gain a better understanding of the many questions that the Kidney PREM throws up - What is it about a centre that causes it to have the biggest impact on patient experience compared to the other variables collected? Does the Kidney PREM result in an improvement in patient experience? If so, can this improvement be translated to different settings? We do not want the Kidney PREM to stand still. Through research projects, consultation and our own quality improvement, we hope the data and community response to the Kidney PREM will continue to evolve so that it remains meaningful, embedded across the system, and improves the experience and outcomes of people living with Kidney disease, as well as those who care for them in the UK. Thank you for being a part of it.Final Published versio

Rationale and design of "Can Very Low Dose Rivaroxaban (VLDR) in addition to dual antiplatelet therapy improve thrombotic status in acute coronary syndrome (VaLiDate-R)" study : A randomised trial modulating endogenous fibrinolysis in patients with acute coronary syndrome

© The Author(s) 2019. This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made.Impaired endogenous fibrinolysis is novel biomarker that can identify patients with ACS at increased cardiovascular risk. The addition of Very Low Dose Rivaroxaban (VLDR) to dual antiplatelet therapy has been shown to reduce cardiovascular events but at a cost of increased bleeding and is therefore not suitable for all-comers. Targeted additional pharmacotherapy with VLDR to improve endogenous fibrinolysis may improve outcomes in high-risk patients, whilst avoiding unnecessary bleeding in low-risk individuals. The VaLiDate-R study (ClinicalTrials.gov Identifier: NCT03775746, EudraCT: 2018-003299-11) is an investigator-initiated, randomised, open-label, single centre trial comparing the effect of 3 antithrombotic regimens on endogenous fibrinolysis in 150 patients with ACS. Subjects whose screening blood test shows impaired fibrinolytic status (lysis time > 2000s), will be randomised to one of 3 treatment arms in a 1:1:1 ratio: clopidogrel 75 mg daily (Group 1); clopidogrel 75 mg daily plus rivaroxaban 2.5 mg twice daily (Group 2); ticagrelor 90 mg twice daily (Group 3), in addition to aspirin 75 mg daily. Rivaroxaban will be given for 30 days. Fibrinolytic status will be assessed during admission and at 2, 4 and 8 weeks. The primary outcome measure is the change in fibrinolysis time from admission to 4 weeks follow-up, using the Global Thrombosis Test. If VLDR can improve endogenous fibrinolysis in ACS, future large-scale studies would be required to assess whether targeted use of VLDR in patients with ACS and impaired fibrinolysis can translate into improved clinical outcomes, with reduction in major adverse cardiovascular events in this high-risk cohort.Peer reviewedFinal Published versio

Variability in exercise tolerance and physiological responses to exercise prescribed relative to physiological thresholds and to maximum oxygen uptake

© 2023 The Authors. Experimental Physiology published by John Wiley & Sons Ltd on behalf of The Physiological Society. This is an open access article under the terms of the Creative Commons Attribution License, https://creativecommons.org/licenses/by/4.0/New Findings: What is the central question of this study? Does prescribing exercise intensity using physiological thresholds create a more homogeneous exercise stimulus than using traditional intensity anchors? What is the main finding and its importance? Prescribing exercise using physiological thresholds, notably critical power, reduced the variability in exercise tolerance and acute metabolic responses. At higher intensities, approaching or exceeding the transition from heavy to severe intensity exercise, the imprecision of using fixed % V ̇ O 2 max ${\dot V_{{{\rm{O}}_{\rm{2}}}{\rm{max}}}}$ as an intensity anchor becomes amplified. Abstract: The objective of this study was to determine whether the variability in exercise tolerance and physiological responses is lower when exercise is prescribed relative to physiological thresholds (THR) compared to traditional intensity anchors (TRAD). Ten individuals completed a series of maximal exercise tests and a series of moderate (MOD), heavy (HVY) and severe intensity (HIIT) exercise bouts prescribed using THR intensity anchors (critical power and gas exchange threshold) and TRAD intensity anchors (maximum oxygen uptake; V ̇ O 2 max ${\dot V_{{{\rm{O}}_{\rm{2}}}{\rm{max}}}}$ ). There were no differences in exercise tolerance or acute response variability between MODTHR and MODTRAD. All individuals completed HVYTHR but only 30% completed HVYTRAD. Compared to HVYTHR, where work rates were all below critical power, work rates in HVYTRAD exceeded critical power in 70% of individuals. There was, however, no difference in acute response variability between HVYTHR and HVYTRAD. All individuals completed HIITTHR but only 20% completed HIITTRAD. The variability in peak (F = 0.274) and average (F = 0.318) blood lactate responses was lower in HIITTHR compared to HIITTRAD. The variability in W′ depletion (the finite work capacity above critical power) after the final interval bout was lower in HIITTHR compared to HIITTRAD (F = 0.305). Using physiological thresholds to prescribe exercise intensity reduced the heterogeneity in exercise tolerance and physiological responses to exercise spanning the boundary between the heavy and severe intensity domains. To increase the precision of exercise intensity prescription, it is recommended that, where possible, physiological thresholds are used in place of V ̇ O 2 max ${\dot V_{{{\rm{O}}_{\rm{2}}}{\rm{max}}}}$ .Peer reviewe

Patient Reported Experience of Kidney Care in the UK 2022

Executive Summary This is the seventh annual report of the national Kidney PREM which is a measure of kidney patients’ self-reported experience of the care they receive from kidney centres. It provides people living with kidney disease with the opportunity to feed into serviceimprovement by sharing what matters most to them. Data collection for this report took place for six weeks between 1st October and 11th November 2022. A total of 11,063 valid responses (7,030 online, 4,033 paper) were received, slightly fewer than in previous years. It is noteworthy that 15,210 paper surveys were sent to centres with only 26.5% being returned. Missing data were more common in paper returns. These issues have considerable resource implications. Older people and those receiving haemodialysis were more likely to use paper though the majority in both groups responded online. The proportion of responders aged over 75 (25.1%) was higher than previous years and this group was over-represented in the sample compared to the proportion in this age category in the UK Renal Registry returns for those receiving kidney replacement therapy (KRT). Individuals of Asian ethnic background remain under-represented on the same basis. Transplant recipients were again markedly under-represented (16.8% of returns) whilst those receiving centre and satellite-based haemodialysis (61.1%) were over-represented. The proportion with chronic kidney disease (not receiving KRT) has remained stable at 15.2%. 145 (9%) of these stated that they had chosen conservative management – more than double that in 2021. Overall, a high proportion of participants (27%) said they needed help to complete the survey – especially those over 75, those of Asian ethnic background, and those receiving dialysis. There has been a small increase in the proportion of haemodialysis recipients participating in shared care – though a significant proportion still reported not being asked to participate, especially older respondents (42.2% of those over 75) and those dialysed in-centre rather than in satellites (41.5%). For the first time, participants were asked whether English was their primary spoken language. 1,235 (12.8%) said they had a language other than English. Almost 100 languages were reported, Asian languages being the most prominent. In another first, individuals were given the option to provide the first part of their postcode. 7,998 analysable values (72.3% of all responses) were returned. These data may allow assessment of participant deprivation. Respondents were asked ‘Overall, how much better or worse was your kidney care experience during the last year?’. Though scores for the majority have remained stable, experience seems to have improved slightly amongst those not receiving KRT, whilst for those receiving centreand satellite-based haemodialysis experience seems to have deteriorated. This may reflect a reversal of service changes enforced by the pandemic. In 2020 non-KRT and, to a lesser extent, transplanted individuals experienced reduced outpatient provision and reduced access to specialist nursing, whilst those receiving centre- and satellite-based haemodialysis experienced some benefits, notably changes in transport arrangement. The trends described may reflect a ‘levelling-out’ effect. There was little change from previous years across the 13 Kidney PREM themes. Access to the Renal Team, Privacy & Dignity and Patient Information remain the highest scoring themes and Sharing Decisions About Your Care and Transport continue to be scored poorly. The gains made in the Transport theme in 2020 have dwindled. Scores for Support, Communication and Needling remain just above the lowest two themes, although Support and Needling continue their slight year on year improvement. These low scoring themes also tended to have the widest ranges of centre mean values. There were major differences in some theme scores by treatment modality. Notably scores for Fluid Intake and Diet were markedly low in those not receiving KRT and Sharing Decisions and Privacy & Dignity amongst in centre-based and satellite haemodialysis recipients. Low scores in Communication were largely driven by scores on questions related to communication with GPs and non-healthcare services; in Transport by not being able to leave the haemodialysis unit within 30 minutes of being ready to leave; and in Environment by parking. Scores on How the Renal Team Treats You were generally good though perhaps reduced by low scores on the question of being asked about emotional feelings. Those centres with the lowest theme scores tended to be those with fewest responses. Though there are a number of areas highlighted above in which there is potential for improvement, it is encouraging that the Overall experience question continues to be scored well with only minor differences across modalities