The experiences of unpaid carers of people living with dementia during the cost-of-living crisis: A reflexive thematic analysis.

Some carers have reported struggling to manage the additional costs of caring for someone with dementia, which has negatively impacted upon their financial resilience. Since 2021, this has been compounded by the cost-of-living crisis experienced in the United Kingdom. This crisis has been driven by sharp increases in energy prices and the prices of everyday basics such as food. This study aimed to better understand how unpaid carers, supporting and co-habiting with people living with dementia, experience the cost-of-living crisis, and the impact this has on their ability to provide care for the person living with dementia. Eleven carers supporting and co-habiting with people living with dementia in England, took part in two semi-structured interviews approximately 3 months apart between November 2022 and February 2023. All transcripts were analysed using reflexive thematic analysis. Carers reported having to make difficult and sometimes drastic decisions in reaction to the cost-of-living crisis and the uncertainty of future cost-of-living increases, such as using blankets and extra lays of clothing for them and the person living with dementia in place of using the heating system in their home, going without food so their loved one can eat, or even missing social opportunities. Some carers described aspects which they felt mitigated some of the negative impact of the cost-of-living crisis, such as being able to draw upon financial resources or their local authority providing social events which included a heated space with food. The cost-of-living crisis has led to carers having to make difficult decisions which created worry and anxiety. Findings indicate that many carers need financial support, and it would be beneficial for free social events to be organised which provide a heated space and food, where carers and people living with dementia can socialise with others.

Anaesthesia and climate change: time to wake up? A rapid qualitative appraisal exploring the views of anaesthetic practitioners regarding the transition to TIVA and the reduction of desflurane.

BACKGROUND: The National Health Service (NHS) has pledged to reach carbon net-zero by 2040. In alignment with this goal, a London hospital's anaesthesia department is actively reducing desflurane use and transitioning towards total intravenous anaesthesia (TIVA) as a sustainable alternative, contributing to environmentally responsible practices within the healthcare sector. METHODS: We conducted a rapid qualitative appraisal through online interviews with 17 anaesthetic practitioners to explore their perspectives regarding this climate change mitigation strategy. Data analysis was undertaken through the use of rapid appraisal sheets and a framework analysis method. RESULTS: Participants highlighted the disadvantages of TIVA, including the increased effort, heightened monitoring requirements, operational challenges, and a lack of clinical confidence associated with its use. Despite these reservations, participants acknowledged TIVA's potential to reduce postoperative nausea. There were perceptions that senior staff members might resist this change due to habits and scepticism over its impact on climate change. To facilitate greater TIVA adoption, participants recommended enhanced training, the implementation of a dashboard to raise awareness of greenhouse gas (GHG) emissions, and the presence of strong climate change leadership within the department. Participants believed that a shift to TIVA should be followed by specific measures such as addressing waste management which is crucial for GHG reduction, emphasising the perceived link between waste and emissions. CONCLUSIONS: The evaluation examines stakeholder attitudes, perceptions, and behaviours, focusing on transitioning from desflurane to TIVA. The study highlights the importance of staff engagement, organisational support, and underscores the crucial role that healthcare practitioners and leadership play in fostering sustainability within the healthcare sector.

Collaborative international partnership: Enabling the development of a state-of-the-art minimally invasive surgical center in rural Uganda through telementoring.

BACKGROUND: Access to minimally invasive surgery (MIS) is limited in Sub-Saharan African countries. In 2019, the Mount Sinai Department of Surgery in New York collaborated with local Ugandans to construct the Kyabirwa Surgical Center (KSC), an independent, replicable, self-sustaining ambulatory surgical center in Uganda. We developed a focused MIS training program using a combination of in-person training and supervised telementoring. We present the results of our initial MIS telementoring experience. METHODS: We worked jointly with Ugandan staff to construct the KSC in the rural province of Jinja. A solar-powered backup battery system ensured continuous power availability. Underground fiber optic cables were installed to provide stable high-speed Internet. The local Ugandan general surgeon (JOD) underwent a mini-fellowship in MIS and then trained extensively using the Fundamentals of Laparoscopic Surgery program. After a weeklong in-person session to train the Ugandan OR team, JOD performed laparoscopic cases with telementoring, which was conducted remotely by surgeons in New York via audiovisual feeds from the KSC OR. RESULTS: From October 2021 to February 2024, JOD performed 61 telementored laparoscopic operations at KSC including 37 appendectomies and 24 cholecystectomies. Feedback was provided regarding patient positioning, port placement, surgical technique, instrument use, and critical steps of the operation. There were no intra-operative complications. Postoperatively, field medical workers visited patients at home to collect follow-up information. Two superficial wound infections (3.3%) were reported in the short-term follow-up. CONCLUSION: Telementoring can be safely implemented to assist surgeons in previously underserved areas to provide advanced laparoscopic surgical care to the local patient population.

Comparison of Single-Port Robotic Donor Nephrectomy and Laparoscopic Donor Nephrectomy.

Purpose: To compare the intra- and postoperative outcomes of single-port robotic donor nephrectomies (SP RDNs) and laparoscopic donor nephrectomies (LDNs). Materials and Methods: We retrospectively reviewed our institutional database for patients who received LDN or SP RDN between September 2020 and December 2022. Donor baseline characteristics, intraoperative outcomes, postoperative outcomes, and recipient renal function were extracted and compared between LDN and SP RDN. SP RDN learning curve analysis based on operative time and graft extraction time was performed using cumulative sum analysis. Results: One hundred forty-four patients underwent LDN and 32 patients underwent SP RDN. LDN and SP RDN had similar operative times (LDN: 190.3 ± 28.0 minutes, SP RDN: 194.5 ± 35.1 minutes, p = 0.3253). SP RDN patients had significantly greater extraction times (LDN: 83.2 ± 40.3 seconds, SP RDN: 204.1 ± 52.2 seconds, p < 0.0001) and warm ischemia times (LDN: 145.1 ± 61.7 seconds, SP RDN: 275.4 ± 65.6 seconds, p < 0.0001). There were no differences in patient subjective pain scores, inpatient opioid usage, or Clavien-Dindo II+ complications. Short- and medium-term postoperative donor and recipient renal function were also similar between the groups. SP RDN graft extraction time and total operative time learning curves were achieved at case 27 and 13, respectively. Conclusion: SP RDN is a safe and feasible alternative to LDN that minimizes postoperative abdominal incisional scars and has a short learning curve. Future randomized prospective clinical trials are needed to confirm the findings of this study and to identify other potential benefits and drawbacks of SP RDNs.

Examining patient benefit.

Healthcare policy, clinical practice and clinical research all declare patient benefit as their avowed aim. Yet, the conceptual question of what exactly constitutes patient benefit has received much less attention than the practical means of realising it. Currently, three key areas of conceptual unclarity make the achieved, real-world impact hard to quantify and disconnect it from the magnitude of the practical endeavour: (1) the distinction between objective and subjective benefit, (2) the relation between individual and population measures of benefit, and (3) the optimal measurement of benefit in research studies. A philosophical understanding of wellbeing is required to clarify these problems. Adopting a rigorous philosophical framework makes apparent that the differing goals of clinicians, researchers and research funders may make differing conceptions of patient benefit appropriate. A framework is proposed for developing rigour in methods for specifying and measuring patient benefit, and for matching benefit measures to different contexts.

The acceptability and feasibility of conducting a randomised controlled trial to test the effectiveness of a walking intervention for older people with persistent musculoskeletal pain in primary care: A mixed methods evaluation of the iPOPP pilot trial.

INTRODUCTION: Persistent musculoskeletal (MSK) pain is associated with physical inactivity in older people. While walking is an acceptable form of physical activity, the effectiveness of walking interventions in this population has yet to be established. OBJECTIVES: To assess the acceptability and feasibility of conducting a randomised controlled trial (RCT) to test the effectiveness of a healthcare assistant-led walking intervention for older people with persistent MSK pain (iPOPP) in primary care. METHODS: A mixed method, three arm pilot RCT was conducted in four general practices and recruited patients aged ≥65 years with persistent MSK pain. Participants were randomised in a 1:1:1 ratio to: (i) usual care, (ii) usual care plus a pedometer intervention, or (iii) usual care plus the iPOPP walking intervention. Descriptive statistics were used in an exploratory analysis of the quantitative data. Qualitative data were analysed using thematic analysis. A triangulation protocol was used to integrate the analyses from the mixed methods. RESULTS: All pre-specified success criteria were achieved in terms of feasibility (recruitment, follow-up and iPOPP intervention adherence) and acceptability. Triangulation of the data identified the need, in the future, to make the iPOPP training (for intervention deliverers) more patient-centred to better support already active patients and the use of individualised goal setting and improve accelerometry data collection processes to increase the amount of valid data. CONCLUSIONS: This pilot trial suggests that the iPOPP intervention and a future full-scale RCT are both acceptable and feasible. The use of a triangulation protocol enabled more robust conclusions about acceptability and feasibility to be drawn.

Hereditary Angioedema patient experiences of medication use and emergency care.

BACKGROUND: Hereditary angioedema (HAE) is a rare inherited illness characterised by recurrent swellings. Four percent of HAE attacks are life threatening throat swellings requiring urgent medical intervention. The aim of this study was to gain an in depth understanding of patient experiences of use of treatment and emergency care. METHODS: 65 participants completed an online survey including open ended questions about their experiences and/or completed an in-depth interview. Interview participants were asked to share and talk about up to five images that they felt best represented their life experiences with HAE. Data were analysed using reflexive thematic analysis. RESULTS: Treatment experiences highlighted the life changing nature of new treatments and benefits for quality of life, but also illustrated common barriers to treatment administration. Emergency care experiences illustrated how throat attacks and fear of their future occurrence could be traumatic. DISCUSSION: Findings indicate that HAE patients need psychological support to process fears and negative experiences. In addition, psychological barriers to treatment administration must be addressed to ensure treatment is used effectively. Education for emergency practitioners is also needed to improve emergency treatment and reduce the psychological burden of delayed emergency care.

Designing Inclusive Qualitative Research with Carers of People Living with Dementia: Methodological Insights.

The support provided by carers of people living with dementia results in savings for the UK economy; however, providing this care has a significant impact on carers. Supports are needed to ensure that carers can continue to provide care, and carers should be involved in the generation of the evidence necessary to develop such support. However, this relies on their ability to meaningfully engage with research, yet current data collection methods create obstacles to engagement. In this paper, we aim to provide a critical examination of approaches to qualitative data collection with carers and produce recommendations for the design of inclusive research. First, different approaches to qualitative data collection are discussed and appraised. Following this, a case study of inclusive research is presented, illustrating how carers can be facilitated to engage in research. Finally, recommendations for inclusive research are offered, including the collection of data without the cared-for person present, building additional care into a study design, providing 'incidental funds,' offering sustenance and remuneration, and undertaking research in a neutral space. These recommendations are designed to facilitate the involvement of carers in research and promote the use of more varied or multifaceted methods to develop the current evidence base.

Advancing the digital and computational capabilities of healthcare providers: A qualitative study of a hospital organisation in the NHS.

Objective: Healthcare systems require transformation to meet societal challenges and projected health demands. Digital and computational tools and approaches are fundamental to this transformation, and hospitals have a key role to play in their development and implementation. This paper reports on a study with the objective of exploring the challenges encountered by hospital leaders and innovators as they implement a strategy to become a data-driven hospital organisation. In doing so, this paper provides guidance to future leaders and innovators seeking to build computational and digital capabilities in complex clinical settings. Methods: Interviews were undertaken with 42 participants associated with a large public hospital organisation within England's National Health Service. Using the concept of institutional readiness as an analytical framework, the paper explores participants' perspectives on the organisation's capacity to support the development of, and benefit from, digital and computational approaches. Results: Participants' accounts reveal a range of specific institutional readiness criteria relating to organisational vision, technical capability, organisational agility, and talent and skills that, when met, enhance the organisations' capacity to support the development and implementation of digital and computational tools. Participant accounts also reveal challenges relating to these criteria, such as unrealistic expectations and the necessary prioritisation of clinical work in resource-constrained settings. Conclusions: The paper identifies a general set of institutional readiness criteria that can guide future hospital leaders and innovators aiming to improve their organisation's digital and computational capability. The paper also illustrates the challenges of pursuing digital and computational innovation in resource-constrained hospital environments.

The Support Priorities of Older Carers of People Living with Dementia: A Nominal Group Technique Study.

The aim of this study was to understand the support priorities of older (65+ years old) carers of people living with dementia. Two nominal group technique focus groups were carried out with older carers of people living with dementia. Twelve carers participated across two focus groups. Participants individually identified support priorities, and through several steps, reached a consensus to produce a ranked list of support priorities. The results consisted of two lists (one list per group), which when combined made up 15 support priorities. These priorities are presented alongside their overall and mean ranking. The authors did not refine these priorities after the focus groups, however, as there was overlap between priorities across the two liststhe results benefited from being themed. These overarching themes consisted of prioritising the carers' holistic needs; having a sense of belonging; support needs to be accessible and timely; support to meet the wellbeing and personhood of the person living with dementia; and understanding and training for the wider community. These results have highlighted support priorities, developed by older carers, that services and organisations can use to better inform the support and services that older carers receive.

Sleeve gastrectomy facilitates weight loss and permits cardiac transplantation in patients with severe obesity and a left ventricular assist device (LVAD).

INTRODUCTION: Patients suffering from advanced heart failure may undergo left ventricular assist device (LVAD) placement as a bridge to cardiac transplantation. However, those with a BMI above 35 kg/m2 are generally not considered eligible for transplant due to their elevated cardiac risk. We review our experience with bariatric surgery in this high-risk population to assess its safety and efficacy in reducing BMI to permit cardiac transplantation. METHODS: We retrospectively reviewed all patients on durable LVAD support who underwent sleeve gastrectomy (SG) at Mount Sinai Hospital between August 2018 and December 2022. Electronic medical records were reviewed to analyze patient demographics, surgical details, and outcomes regarding weight loss and heart transplantation. RESULTS: We identified twelve LVAD patients who underwent SG. Three were performed laparoscopically and 9 via robotic approach. Four patients (33.3%) underwent an orthotopic heart transplant (OHTx). Half of these patients were female. For patients who underwent OHTx, mean age at LVAD placement was 41.0 (R30.6-52.2), at SG was 43.9 (R32.7-55.0) and at OHTx was 45.3 years (R33.3-56.8). Mean BMI increased from 38.8 at LVAD placement to 42.5 prior to SG. Mean time from SG to OHTx was 17.9 months (R6-7-27.5) during which BMI decreased to mean 32.8 at the time of OHTx. At most recent follow-up, mean BMI was 31.9. All patients were anticoagulated prior to surgery; one required return to the operating room on post-operative day 1 after SG for bleeding and one was re-admitted on post-operative day 7 for hematochezia treated conservatively. CONCLUSION: SG is a safe and effective operation in patients with severe obesity and heart failure requiring an LVAD. 66.7% of our cohort achieved target BMI < 35 and 33.3% underwent heart transplantation. Longer term follow-up is needed to clarify full bridge-to-transplant rate and long-term survival outcomes.

An exploratory structural equation modelling (ESEM) of the Eating Disorders Examination Questionnaire (EDE-Q) in bariatric patients.

Several studies in clinical and non-clinical populations indicate differences between rationally and empirically derived subscales for the Eating Disorder Examination Questionnaire (EDE-Q), including samples of patients seeking bariatric surgery. This study aimed to use exploratory structural equation modelling (ESEM) to estimate the factor structure of the EDE-Q and assess for the additive value of alternative measurement of eating disorder symptoms. Adolescents and adults completed the EDE-Q and a psychiatric evaluation prior to bariatric surgery. Data from 330 participants were analysed using the original four-factor and modified three-factor structure of the EDE-Q using both confirmatory factor analysis (CFA) and exploratory structural equation modelling (ESEM). Age, ethnicity, and body mass index were examined as covariates in the best fitting model, and model subscales used to generate a predictive model of clinician screened DSM-5 eating disorder diagnoses for criterion validity. A CFA of the four-factor EDE-Q provided poor model fit for a pre-surgical bariatric population, but the three-factor EDE-Q and an ESEM of the four-factor EDE-Q provided excellent model fit. The Eating Concern subscale of the four-factor ESEM model significantly predicted eating disorder diagnosis and was positively correlated with age. Our results suggest the ESEM derived factors of the EDE-Q offered some improvements to the original empirically derived factor structure, as subscale scores based on the original items and cross-loading items yielded an adequate prediction of clinician diagnoses.

Incorporating FRAX into a nurse-delivered integrated care review: a multi-method qualitative study.

BACKGROUND: People with inflammatory rheumatological conditions (IRCs) are at increased risk of common comorbidities including osteoporosis. AIM: To explore the barriers to and facilitators of implementing nurse-delivered fracture risk assessments in primary care, in the context of multimorbidity reviews for people with IRCs. DESIGN & SETTING: A multi-method qualitative study in primary care. METHOD: As part of a process evaluation in a pilot trial, semi-structured interviews were conducted with 20 patients, two nurses, and three GPs. Twenty-four patient-nurse INCLUDE review consultations were audiorecorded and transcribed. A framework analysis was conducted using the Theoretical Domains Framework (TDF). RESULTS: Nurses reported positive views about the value of the Fracture Risk Assessment Tool (FRAX) and they felt confident to deliver the assessments following training. Barriers to implementation, as identified by TDF, particularly related to the domains of knowledge, skills, professional roles, and environmental context. GPs reported difficulty keeping up to date with osteoporosis guidelines and voiced differing opinions about whether fracture risk assessment was the role of primary or secondary care. Lack of integration of FRAX into IT systems was a barrier to use. GPs and nurses had differing views about the nurse role in communicating risk and acting on FRAX findings; for example, explanations of the FRAX result and action needed were limited. Patients reported limited understanding of FRAX outcomes. CONCLUSION: The findings suggest that, with appropriate training including risk communication, practice nurses are likely to be confident to play a key role in conducting fracture risk assessments, but further work is needed to address the barriers identified.

Carers' experiences of caring for a friend or family member with dementia during the Covid-19 pandemic.

OBJECTIVES: This study aimed to explore carers' experiences of supporting a family member or friend with dementia through COVID-19 and experiences of hope and resilience during this time. METHODS: Qualitative longitudinal research was undertaken in the UK, with 13 unpaid carers of people living with dementia who took part in two semi-structured interviews 8 weeks apart between June and October 2020. All transcripts were analysed using reflexive thematic analysis. FINDINGS: Four themes were developed and included: COVID-19 impacted negatively upon everyday living; carer resilience: adapting to COVID-19; analysis of risk: safeguarding the person living with dementia; and thinking about the future with COVID-19. CONCLUSIONS: The results illustrated how the sudden changes which occurred during the pandemic negatively impacted on carers and people living with dementia in several ways, including additional responsibilities and taking away hope. The importance of continued formal and informal support for carers and people living with dementia during COVID-19 were highlighted. Formal services, care homes, and organisations need to be supported to implement procedures to ensure a safe environment during future lockdowns or periods of social restrictions. This will enable carers to remain visiting their family members and increase their confidence in accessing services and allowing paid carers to support their family member with dementia. These results have also illustrated the resilience of carers, who adapted to sudden changes which impacted negatively on their wellbeing and the wellbeing of the person living with dementia.

GeoSPM: Geostatistical parametric mapping for medicine.

The characteristics and determinants of health and disease are often organized in space, reflecting our spatially extended nature. Understanding the influence of such factors requires models capable of capturing spatial relations. Drawing on statistical parametric mapping, a framework for topological inference well established in the realm of neuroimaging, we propose and validate an approach to the spatial analysis of diverse clinical data-GeoSPM-based on differential geometry and random field theory. We evaluate GeoSPM across an extensive array of synthetic simulations encompassing diverse spatial relationships, sampling, and corruption by noise, and demonstrate its application on large-scale data from UK Biobank. GeoSPM is readily interpretable, can be implemented with ease by non-specialists, enables flexible modeling of complex spatial relations, exhibits robustness to noise and under-sampling, offers principled criteria of statistical significance, and is through computational efficiency readily scalable to large datasets. We provide a complete, open-source software implementation.

Representational ethical model calibration.

Equity is widely held to be fundamental to the ethics of healthcare. In the context of clinical decision-making, it rests on the comparative fidelity of the intelligence - evidence-based or intuitive - guiding the management of each individual patient. Though brought to recent attention by the individuating power of contemporary machine learning, such epistemic equity arises in the context of any decision guidance, whether traditional or innovative. Yet no general framework for its quantification, let alone assurance, currently exists. Here we formulate epistemic equity in terms of model fidelity evaluated over learnt multidimensional representations of identity crafted to maximise the captured diversity of the population, introducing a comprehensive framework for Representational Ethical Model Calibration. We demonstrate the use of the framework on large-scale multimodal data from UK Biobank to derive diverse representations of the population, quantify model performance, and institute responsive remediation. We offer our approach as a principled solution to quantifying and assuring epistemic equity in healthcare, with applications across the research, clinical, and regulatory domains.

An Initial Test of the Efficacy of a Digital Health Intervention for Bariatric Surgery Candidates.

BACKGROUND: Rigorous research on smartphone apps for individuals pursuing bariatric surgery is limited. A digital health intervention was recently developed using standard behavioral weight loss programs with specific modifications for bariatric surgery. The current study evaluated this intervention for improving diet, exercise, and psychosocial health over 8 weeks prior to surgery in an academic medical center. METHODS: Fifty patients were randomized to receive either the digital intervention or treatment as usual prior to a surgical procedure. Measures of anxiety, depression, stress, quality of life, physical activity, and diet were administered at baseline and at 8-week follow-up. Statistical power of 80% estimated for N = 50 to detect ES = 0.68 with alpha = 0.05. RESULTS: Results of intent-to-treat (N = 50 baseline, N = 36 follow-up) analyses indicated significant moderate differences in stress and anxiety (ES = - 0.58 to - 0.62) favoring the digital intervention. Effects of the program on total daily calories consumed, body mass index, quality of life, and eating disorder symptoms were small (ES = - 0.24 to 0.33) and not significant. Given small effects for these domains, the sample size of the study likely affected the ability to detect significant differences. CONCLUSIONS: The digital health intervention appears to significantly impact several measures of physical activity and emotional functioning in candidates for bariatric surgery, which could augment surgical outcomes.

Deep forecasting of translational impact in medical research.

The value of biomedical research-a $1.7 trillion annual investment-is ultimately determined by its downstream, real-world impact, whose predictability from simple citation metrics remains unquantified. Here we sought to determine the comparative predictability of future real-world translation-as indexed by inclusion in patents, guidelines, or policy documents-from complex models of title/abstract-level content versus citations and metadata alone. We quantify predictive performance out of sample, ahead of time, across major domains, using the entire corpus of biomedical research captured by Microsoft Academic Graph from 1990-2019, encompassing 43.3 million papers. We show that citations are only moderately predictive of translational impact. In contrast, high-dimensional models of titles, abstracts, and metadata exhibit high fidelity (area under the receiver operating curve [AUROC] > 0.9), generalize across time and domain, and transfer to recognizing papers of Nobel laureates. We argue that content-based impact models are superior to conventional, citation-based measures and sustain a stronger evidence-based claim to the objective measurement of translational potential.

Boundary work during COVID-19: The transformation of research review and set-up.

BACKGROUND AND AIMS: The rapid setting up of research during the COVID-19 pandemic led to changes in ways of working within research organisations. The aim of this study was to examine the experiences of staff involved in the research review and set-up system at a large NHS and university partnership in the UK through the lens of boundary theory. METHODS: We carried out a rapid qualitative appraisal based on telephone interviews (n=25) to explore how staff experienced the research review and set-up system during the pandemic. RESULTS: In light of the pressures created by the pandemic, the boundaries established to set up distinct groups and responsibilities were modified to allow for different ways of working. Some of the new structures and processes were seen positively and brought groups that previously worked at a distance closer together. CONCLUSIONS: The reconceptualisation of relations within the research system during the pandemic added more fluidity to ways of working within the research office and contributed to closer working interactions and an expanded team ethos.