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Honoring a child's legacy is an essential aspect of meaning-making for bereaved parents, yet little is known about storytelling as a mechanism. Through narrative analysis of 19 bereaved parent interviews focused on legacy, we examined the role of storytelling in creating and sustaining legacy. Most participants (89%) told stories centered around the child's impact and parent's coping, including the child's character and interpersonal relationships during and after their lifetime as well as how the child's legacy influenced parents' grief experiences. Future research is needed to explore the potential impact of storytelling initiatives to support legacy-making for bereaved caregivers.
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BACKGROUND: Markerless motion capture (MMC) uses video cameras or depth sensors for full body tracking and presents a promising approach for objectively and unobtrusively monitoring functional performance within community settings, to aid clinical decision-making in neurodegenerative diseases such as dementia. OBJECTIVE: The primary objective of this systematic review was to investigate the application of MMC using full-body tracking, to quantify functional performance in people with dementia, mild cognitive impairment, and Parkinson disease. METHODS: A systematic search of the Embase, MEDLINE, CINAHL, and Scopus databases was conducted between November 2022 and February 2023, which yielded a total of 1595 results. The inclusion criteria were MMC and full-body tracking. A total of 157 studies were included for full-text screening, out of which 26 eligible studies that met the selection criteria were included in the review.â¯. RESULTS: Primarily, the selected studies focused on gait analysis (n=24), while other functional tasks, such as sit to stand (n=5) and stepping in place (n=1), were also explored. However, activities of daily living were not evaluated in any of the included studies. MMC models varied across the studies, encompassing depth cameras (n=18) versus standard video cameras (n=5) or mobile phone cameras (n=2) with postprocessing using deep learning models. However, only 6 studies conducted rigorous comparisons with established gold-standard motion capture models. CONCLUSIONS: Despite its potential as an effective tool for analyzing movement and posture in individuals with dementia, mild cognitive impairment, and Parkinson disease, further research is required to establish the clinical usefulness of MMC in quantifying mobility and functional performance in the real world.
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Disfunción Cognitiva , Captura de Movimiento , Humanos , Actividades Cotidianas , Disfunción Cognitiva/fisiopatología , Disfunción Cognitiva/diagnóstico , Demencia/fisiopatología , Demencia/diagnóstico , Captura de Movimiento/métodos , Enfermedades Neurodegenerativas/fisiopatología , Enfermedad de Parkinson/fisiopatología , Rendimiento Físico FuncionalRESUMEN
OBJECTIVE: To determine the budget impact of implementing multidisciplinary complex pain clinics (MCPCs) for Veterans Health Administration (VA) patients living with complex chronic pain and substance use disorder comorbidities who are on risky opioid regimens. DATA SOURCES AND STUDY SETTING: We measured implementation costs for three MCPCs over 2 years using micro-costing methods. Intervention and downstream costs were obtained from the VA Managerial Cost Accounting System from 2 years prior to 2 years after opening of MCPCs. STUDY DESIGN: Staff at the three VA sites implementing MCPCs were supported by Implementation Facilitation. The intervention cohort was patients at MCPC sites who received treatment based on their history of chronic pain and risky opioid use. Intervention costs and downstream costs were estimated with a quasi-experimental study design using a propensity score-weighted difference-in-difference approach. The healthcare utilization costs of treated patients were compared with a control group having clinically similar characteristics and undergoing the standard route of care at neighboring VA medical centers. Cancer and hospice patients were excluded. DATA COLLECTION/EXTRACTION METHODS: Activity-based costing data acquired from MCPC sites were used to estimate implementation costs. Intervention and downstream costs were extracted from VA administrative data. PRINCIPAL FINDINGS: Average Implementation Facilitation costs ranged from $380 to $640 per month for each site. Upon opening of three MCPCs, average intervention costs per patient were significantly higher than the control group at two intervention sites. Downstream costs were significantly higher at only one of three intervention sites. Site-level differences were due to variation in inpatient costs, with some confounding likely due to the COVID-19 pandemic. This evidence suggests that necessary start-up investments are required to initiate MCPCs, with allocations of funds needed for implementation, intervention, and downstream costs. CONCLUSIONS: Incorporating implementation, intervention, and downstream costs in this evaluation provides a thorough budget impact analysis, which decision-makers may use when considering whether to expand effective programming.
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PURPOSE: The COVID-19 pandemic brought with it significant social, economic and health uncertainties. These were proposed to impact young people more compared to adults, leading adolescents to report more mental health problems during the pandemic. The current study examined whether differences in cognitive risk (tolerance of uncertainty) and protective (psychological flexibility) factors accounted for age-related differences in depression and anxiety. METHODS: These associations were investigated in the COVID-19 Risks Across the Lifespan (CORAL) cohort (N = 2280, 11-89 years). RESULTS: The results showed that adolescents experienced greater intolerance of uncertainty and lower psychological flexibility compared to adults and older adults. Tolerance of uncertainty did not account for age-related differences in depression or anxiety. However, psychological flexibility conferred more protective advantage for anxiety in adults compared to adolescents. CONCLUSION: The observed age-related differences in risk and protective factors advance our understanding of developmental vulnerabilities to depression and anxiety. Implications for mental health interventions in the context of future pandemics are discussed.
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BACKGROUND: Legacy-oriented interventions have the potential to offer pediatric oncology patients and families comfort at end of life and during bereavement. Certified child life specialists often provide these services, and presently little is known about whether disparities exist in the provision of legacy-oriented interventions. METHODS: In this retrospective decedent cohort study, we examined demographic and clinical characteristics from a sample of 678 pediatric oncology patients who died between 2015 and 2019. Bivariate analysis assessed differences between patients who received any versus no legacy-oriented intervention. Uni- and multivariable logistic regression models assessed associations of baseline characteristics and likelihood of receiving legacy-oriented intervention. Further multivariable analysis explored joint effects of significant variables identified in the univariable analysis. RESULTS: Fifty-two percent of patients received a legacy-oriented intervention. Older adolescents (≥13 years) were less likely (odds ratio [OR]: 1.73, p = .007) to receive legacy-oriented interventions than younger ones. Patients with home/hospice deaths were also less likely (OR: 19.98, p < .001) to receive interventions compared to patients who passed away at SJCRH locations. Hispanic patients (OR: 1.53, p = .038) and those in palliative care (OR: 10.51, p < .001) were more likely to receive interventions. No significant race association was noted. CONCLUSION: All children and adolescents with cancer deserve quality care at end of life, including access to legacy-oriented interventions, yet nearly half of patients in this cohort did not receive these services. By identifying demographic and clinical characteristics associated with decreased odds of receiving legacy-oriented interventions, healthcare professionals can modify end-of-life care processes to improve access. Introducing legacy-oriented interventions early and increasing exposure in community spaces may enhance access to legacy-oriented interventions for pediatric oncology patients.
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Neoplasias , Cuidado Terminal , Humanos , Masculino , Femenino , Niño , Adolescente , Estudios Retrospectivos , Neoplasias/terapia , Neoplasias/mortalidad , Preescolar , Lactante , Accesibilidad a los Servicios de Salud , Cuidados Paliativos , Estudios de Seguimiento , Recién Nacido , Pronóstico , Oncología Médica , AflicciónRESUMEN
OBJECTIVES: Urinary tract infections (UTIs) frequently cause hospitalisation and death in people living with dementia (PLWD). We examine UTI incidence and associated mortality among PLWD relative to matched controls and people with diabetes and investigate whether delayed or withheld treatment further impacts mortality. METHODS: Data were extracted for n = 2,449,814 people aged ≥ 50 in Wales from 2000-2021, with groups matched by age, sex, and multimorbidity. Poisson regression was used to estimate incidences of UTI and mortality. Cox regression was used to study the effects of treatment timing. RESULTS: UTIs in dementia (HR=2.18, 95 %CI [1.88-2.53], p < .0) and diabetes (1.21[1.01-1.45], p = .035) were associated with high mortality, with the highest risk in individuals with diabetes and dementia (both) (2.83[2.40-3.34], p < .0) compared to matched individuals with neither dementia nor diabetes. 5.4 % of untreated PLWD died within 60 days of GP diagnosis-increasing to 5.9 % in PLWD with diabetes. CONCLUSIONS: Incidences of UTI and associated mortality are high in PLWD, especially in those with diabetes and dementia. Delayed treatment for UTI is further associated with high mortality.
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Demencia , Infecciones Urinarias , Humanos , Demencia/epidemiología , Demencia/complicaciones , Demencia/mortalidad , Infecciones Urinarias/epidemiología , Infecciones Urinarias/mortalidad , Infecciones Urinarias/complicaciones , Masculino , Femenino , Anciano , Incidencia , Persona de Mediana Edad , Anciano de 80 o más Años , Gales/epidemiología , Factores de Riesgo , Diabetes Mellitus/epidemiologíaRESUMEN
BACKGROUND: Technology-related research on people with dementia and their carers often aims to enable people to remain living at home for longer and prevent unnecessary hospital admissions. To develop person-centered, effective, and ethical research, patient and public involvement (PPI) is necessary, although it may be perceived as more difficult with this cohort. With recent and rapid expansions in health and care-related technology, this review explored how and with what impact collaborations between researchers and stakeholders such as people with dementia and their carers have taken place. OBJECTIVE: This review aims to describe approaches to PPI used to date in technology-related dementia research, along with the barriers and facilitators and impact of PPI in this area. METHODS: A scoping review of literature related to dementia, technology, and PPI was conducted using MEDLINE, PsycINFO, Embase, and CINAHL. Papers were screened for inclusion by 2 authors. Data were then extracted using a predesigned data extraction table by the same 2 authors. A third author supported the resolution of any conflicts at each stage. Barriers to and facilitators of undertaking PPI were then examined and themed. RESULTS: The search yielded 1694 papers, with 31 (1.83%) being analyzed after screening. Most (21/31, 68%) did not make clear distinctions between activities undertaken as PPI and those undertaken by research participants, and as such, their involvement did not fit easily into the National Institute for Health and Care Research definition of PPI. Most of this mixed involvement focused on reviewing or evaluating technology prototypes. A range of approaches were described, most typically using focus groups or co-design workshops. In total, 29% (9/31) described involvement at multiple stages throughout the research cycle, sometimes with evidence of sharing decision-making power. Some (23/31, 74%) commented on barriers to or facilitators of effective PPI. The challenges identified often regarded issues of working with people with significant cognitive impairments and pressures on time and resources. Where reported, the impact of PPI was largely reported as positive, including the experiences for patient and public partners, the impact on research quality, and the learning experience it provided for researchers. Only 4 (13%) papers used formal methods for evaluating impact. CONCLUSIONS: Researchers often involve people with dementia and other stakeholders in technology research. At present, involvement is often limited in scope despite aspirations for high levels of involvement and partnership working. Involving people with dementia, their carers, and other stakeholders can have a positive impact on research, patient and public partners, and researchers. Wider reporting of methods and facilitative strategies along with more formalized methods for recording and reporting on meaningful impact would be helpful so that all those involved-researchers, patients, and other stakeholders-can learn how we can best conduct research together.
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Demencia , Pacientes , Humanos , Academias e Institutos , Altruismo , Tecnología , Demencia/terapiaRESUMEN
As the field of three-dimensional (3D) visualization rapidly advances, how healthcare professionals perceive and interact with real and virtual objects becomes increasingly complex. Lack of clear vocabulary to navigate the changing landscape of 3D visualization hinders clinical and scientific advancement, particularly within the field of radiology. In this article, we provide foundational definitions and illustrative examples for 3D visualization in clinical care, with a focus on the pediatric patient population. We also describe how understanding 3D visualization tools enables better alignment of hardware and software products with intended use-cases, thereby maximizing impact for patients, families, and healthcare professionals.
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Imagenología Tridimensional , Radiología , Niño , Humanos , Imagenología Tridimensional/métodos , Pediatría/métodos , Radiología/métodos , Programas InformáticosRESUMEN
Urinary Tract Infections (UTIs) are one of the most prevalent bacterial infections in older adults and a significant contributor to unplanned hospital admissions in People Living with Dementia (PLWD), with early detection being crucial due to the predicament of reporting symptoms and limited help-seeking behaviour. The most common diagnostic tool is urine sample analysis, which can be time-consuming and is only employed where UTI clinical suspicion exists. In this method development and proof-of-concept study, participants living with dementia were monitored via low-cost devices in the home that passively measure activity, sleep, and nocturnal physiology. Using 27828 person-days of remote monitoring data (from 117 participants), we engineered features representing symptoms used for diagnosing a UTI. We then evaluate explainable machine learning techniques in passively calculating UTI risk and perform stratification on scores to support clinical translation and allow control over the balance between alert rate and sensitivity and specificity. The proposed UTI algorithm achieves a sensitivity of 65.3% (95% Confidence Interval (CI) = 64.3-66.2) and specificity of 70.9% (68.6-73.1) when predicting UTIs on unseen participants and after risk stratification, a sensitivity of 74.7% (67.9-81.5) and specificity of 87.9% (85.0-90.9). In addition, feature importance methods reveal that the largest contributions to the predictions were bathroom visit statistics, night-time respiratory rate, and the number of previous UTI events, aligning with the literature. Our machine learning method alerts clinicians of UTI risk in subjects, enabling earlier detection and enhanced screening when considering treatment.
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INTRODUCTION AND AIMS: Digital biomarkers can provide a cost-effective, objective and robust measure for neurological disease progression, changes in care needs and the effect of interventions. Motor function, physiology and behaviour can provide informative measures of neurological conditions and neurodegenerative decline. New digital technologies present an opportunity to provide remote, high-frequency monitoring of patients from within their homes. The purpose of the living lab study is to develop novel digital biomarkers of functional impairment in those living with neurodegenerative disease (NDD) and neurological conditions. METHODS AND ANALYSIS: The Living Lab study is a cross-sectional observational study of cognition and behaviour in people living with NDDs and other, non-degenerative neurological conditions. Patients (n≥25 for each patient group) with dementia, Parkinson's disease, amyotrophic lateral sclerosis, mild cognitive impairment, traumatic brain injury and stroke along with controls (n≥60) will be pragmatically recruited. Patients will carry out activities of daily living and functional assessments within the Living Lab. The Living Lab is an apartment-laboratory containing a functional kitchen, bathroom, bed and living area to provide a controlled environment to develop novel digital biomarkers. The Living Lab provides an important intermediary stage between the conventional laboratory and the home. Multiple passive environmental sensors, internet-enabled medical devices, wearables and electroencephalography (EEG) will be used to characterise functional impairments of NDDs and non-NDD conditions. We will also relate these digital technology measures to clinical and cognitive outcomes. ETHICS AND DISSEMINATION: Ethical approvals have been granted by the Imperial College Research Ethics Committee (reference number: 21IC6992). Results from the study will be disseminated at conferences and within peer-reviewed journals.
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Disfunción Cognitiva , Enfermedades Neurodegenerativas , Humanos , Estudios Transversales , Actividades Cotidianas , Enfermedades Neurodegenerativas/diagnóstico , Disfunción Cognitiva/psicología , Cognición , Biomarcadores , Estudios Observacionales como AsuntoRESUMEN
PURPOSE: Cancer disrupts the social lives of adolescents and young adults (AYA). Social media may be a resource to engage with social networks, seek entertainment, and receive social support. However, some aspects of social media engagement may be emotionally burdensome and sensitive for AYA to navigate. The aim of this qualitative study was to contextualize the impact of cancer on AYA social media interaction. METHODS: Eight AYA ages 15-21 years and recently diagnosed with cancer participated in a semi-structured interview. AYA were asked about their social media interactions, engagement habits, and online cancer-related disclosure. Interviews averaged 36 min in length and were de-identified and transcribed verbatim and analyzed using thematic analysis. RESULTS: Four salient themes emerged from the data: (1) AYA engage in active and passive social media use depending on the platform, (2) AYA social media habits change due to treatment experiences, (3) AYA evaluate and protect their self-image, privacy, and time, and (4) AYA access social support online and interpret its meaning in different ways. AYA reported using social media, but many altered their frequency and type of interaction after diagnosis. Some were comfortable sharing about cancer and continued to interact actively online; others felt protective and vulnerable, transitioning to media consumption, or withdrawing from use. While social media provided space to receive direct and indirect social support, AYA interpreted the meaning of support in complex ways. CONCLUSIONS: Social media may serve a variety of socio-emotional needs, but not all AYA will benefit from the same types of social media interaction. This study highlights the importance of talking to AYA with cancer about their social media interactions during treatment to better support their coping and adjustment.
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Background: Online technology could potentially revolutionise how patients are cognitively assessed and monitored. However, it remains unclear whether assessments conducted remotely can match established pen-and-paper neuropsychological tests in terms of sensitivity and specificity. Methods: This observational study aimed to optimise an online cognitive assessment for use in traumatic brain injury (TBI) clinics. The tertiary referral clinic in which this tool has been clinically implemented typically sees patients a minimum of 6 months post-injury in the chronic phase. Between March and August 2019, we conducted a cross-group, cross-device and factor analyses at the St. Mary's Hospital TBI clinic and major trauma wards at Imperial College NHS trust and St. George's Hospital in London (UK), to identify a battery of tasks that assess aspects of cognition affected by TBI. Between September 2019 and February 2020, we evaluated the online battery against standard face-to-face neuropsychological tests at the Imperial College London research centre. Canonical Correlation Analysis (CCA) determined the shared variance between the online battery and standard neuropsychological tests. Finally, between October 2020 and December 2021, the tests were integrated into a framework that automatically generates a results report where patients' performance is compared to a large normative dataset. We piloted this as a practical tool to be used under supervised and unsupervised conditions at the St. Mary's Hospital TBI clinic in London (UK). Findings: The online assessment discriminated processing-speed, visual-attention, working-memory, and executive-function deficits in TBI. CCA identified two significant modes indicating shared variance with standard neuropsychological tests (r = 0.86, p < 0.001 and r = 0.81, p = 0.02). Sensitivity to cognitive deficits after TBI was evident in the TBI clinic setting under supervised and unsupervised conditions (F (15,555) = 3.99; p < 0.001). Interpretation: Online cognitive assessment of TBI patients is feasible, sensitive, and efficient. When combined with normative sociodemographic models and autogenerated reports, it has the potential to transform cognitive assessment in the healthcare setting. Funding: This work was funded by a National Institute for Health Research (NIHR) Invention for Innovation (i4i) grant awarded to DJS and AH (II-LB-0715-20006).
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BACKGROUND: Sleep disorders are common among the aging population and people with neurodegenerative diseases. Sleep disorders have a strong bidirectional relationship with neurodegenerative diseases, where they accelerate and worsen one another. Although one-to-one individual cognitive behavioral interventions (conducted in-person or on the internet) have shown promise for significant improvements in sleep efficiency among adults, many may experience difficulties accessing interventions with sleep specialists, psychiatrists, or psychologists. Therefore, delivering sleep intervention through an automated chatbot platform may be an effective strategy to increase the accessibility and reach of sleep disorder intervention among the aging population and people with neurodegenerative diseases. OBJECTIVE: This work aims to (1) determine the feasibility and usability of an automated chatbot (named MotivSleep) that conducts sleep interviews to encourage the aging population to report behaviors that may affect their sleep, followed by providing personalized recommendations for better sleep based on participants' self-reported behaviors; (2) assess the self-reported sleep assessment changes before, during, and after using our automated sleep disturbance intervention chatbot; (3) assess the changes in objective sleep assessment recorded by a sleep tracking device before, during, and after using the automated chatbot MotivSleep. METHODS: We will recruit 30 older adult participants from West London for this pilot study. Each participant will have a sleep analyzer installed under their mattress. This contactless sleep monitoring device passively records movements, heart rate, and breathing rate while participants are in bed. In addition, each participant will use our proposed chatbot MotivSleep, accessible on WhatsApp, to describe their sleep and behaviors related to their sleep and receive personalized recommendations for better sleep tailored to their specific reasons for disrupted sleep. We will analyze questionnaire responses before and after the study to assess their perception of our proposed chatbot; questionnaire responses before, during, and after the study to assess their subjective sleep quality changes; and sleep parameters recorded by the sleep analyzer throughout the study to assess their objective sleep quality changes. RESULTS: Recruitment will begin in May 2023 through UK Dementia Research Institute Care Research and Technology Centre organized community outreach. Data collection will run from May 2023 until December 2023. We hypothesize that participants will perceive our proposed chatbot as intelligent and trustworthy; we also hypothesize that our proposed chatbot can help improve participants' subjective and objective sleep assessment throughout the study. CONCLUSIONS: The MotivSleep automated chatbot has the potential to provide additional care to older adults who wish to improve their sleep in more accessible and less costly ways than conventional face-to-face therapy. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): PRR1-10.2196/45752.
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OBJECTIVE: We aimed to use mathematical models of SARS-COV-2 to assess the potential efficacy of non-pharmaceutical interventions on transmission in the parcel delivery and logistics sector. METHODS: We devloped a network-based model of workplace contacts based on data and consultations from companies in the parcel delivery and logistics sectors. We used these in stochastic simulations of disease transmission to predict the probability of workplace outbreaks in this settings. Individuals in the model have different viral load trajectories based on SARS-CoV-2 in-host dynamics, which couple to their infectiousness and test positive probability over time, in order to determine the impact of testing and isolation measures. RESULTS: The baseline model (without any interventions) showed different workplace infection rates for staff in different job roles. Based on our assumptions of contact patterns in the parcel delivery work setting we found that when a delivery driver was the index case, on average they infect only 0.14 other employees, while for warehouse and office workers this went up to 0.65 and 2.24 respectively. In the LIDD setting this was predicted to be 1.40, 0.98, and 1.34 respectively. Nonetheless, the vast majority of simulations resulted in 0 secondary cases among customers (even without contact-free delivery). Our results showed that a combination of social distancing, office staff working from home, and fixed driver pairings (all interventions carried out by the companies we consulted) reduce the risk of workplace outbreaks by 3-4 times. CONCLUSION: This work suggests that, without interventions, significant transmission could have occured in these workplaces, but that these posed minimal risk to customers. We found that identifying and isolating regular close-contacts of infectious individuals (i.e. house-share, carpools, or delivery pairs) is an efficient measure for stopping workplace outbreaks. Regular testing can make these isolation measures even more effective but also increases the number of staff isolating at one time. It is therefore more efficient to use these isolation measures in addition to social distancing and contact reduction interventions, rather than instead of, as these reduce both transmission and the number of people needing to isolate at one time.
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COVID-19 , SARS-CoV-2 , Humanos , COVID-19/epidemiología , COVID-19/prevención & control , Brotes de Enfermedades/prevención & control , Modelos Teóricos , Lugar de TrabajoRESUMEN
BACKGROUND: Trends in occupational disease incidence are estimated in voluntary reporting schemes such as The Health and Occupational Reporting (THOR) Network in the UK. Voluntary reporting schemes request responses even if no cases are observed to reduce uncertainty in non-response. This may result in false zeros that bias trends estimates. Analysis using zero-inflated models is unsuitable for specific health outcomes due to overestimates of the excess zeros. Here, we attempt to account for excess zeros while investigating condition-specific trends. METHODS: Zero-inflated negative binomial (ZINB) models were fitted to three THOR work-related ill health surveillance schemes Occupational Skin Disease Surveillance (437 reporters between 1996 and 2019), Occupational Physicians Reporting Activity (1094 between 1996 and 2019) and Surveillance of Work-Related and Occupational Respiratory Disease (878 between 1999 and 2019). The probability associated with a response being a false zero was estimated and applied in weighted negative binomial (wgt-NB) models fitted to specific ill-heath conditions. Three ill-health conditions from the three THOR schemes were considered; contact dermatitis, musculoskeletal and asthma, respectively. RESULTS: Wgt-NB models approximately estimated the incidence rate ratios reported by the ZINB models (eg, EPIDERM; ZINB=0.969, NB=0.963, wgt-NB=0.968) for all health outcome annual trends. This was consistent for specific health outcomes which also tended towards the null (eg, contact dermatitis; NB=0.964, wgt-NB=0.969), indicating potentially overestimated downward trends. Though as the ratio of excess zeros to true zeros decreased in rarer health outcomes, the influence on trends also decreased. CONCLUSIONS: Through weighting, we were able to adjust for excess zeros in health outcome-specific trends estimates. Though uncertainty is still present in underlying reporter behaviour meaning caution should be applied with interpretation of any results.
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Asma , Dermatitis por Contacto , Enfermedades Profesionales , Humanos , Enfermedades Profesionales/epidemiología , Incidencia , Modelos EstadísticosRESUMEN
BACKGROUND: Internet of Things (IoT) technology enables physiological measurements to be recorded at home from people living with dementia and monitored remotely. However, measurements from people with dementia in this context have not been previously studied. We report on the distribution of physiological measurements from 82 people with dementia over approximately 2 years. OBJECTIVE: Our objective was to characterize the physiology of people with dementia when measured in the context of their own homes. We also wanted to explore the possible use of an alerts-based system for detecting health deterioration and discuss the potential applications and limitations of this kind of system. METHODS: We performed a longitudinal community-based cohort study of people with dementia using "Minder," our IoT remote monitoring platform. All people with dementia received a blood pressure machine for systolic and diastolic blood pressure, a pulse oximeter measuring oxygen saturation and heart rate, body weight scales, and a thermometer, and were asked to use each device once a day at any time. Timings, distributions, and abnormalities in measurements were examined, including the rate of significant abnormalities ("alerts") defined by various standardized criteria. We used our own study criteria for alerts and compared them with the National Early Warning Score 2 criteria. RESULTS: A total of 82 people with dementia, with a mean age of 80.4 (SD 7.8) years, recorded 147,203 measurements over 958,000 participant-hours. The median percentage of days when any participant took any measurements (ie, any device) was 56.2% (IQR 33.2%-83.7%, range 2.3%-100%). Reassuringly, engagement of people with dementia with the system did not wane with time, reflected in there being no change in the weekly number of measurements with respect to time (1-sample t-test on slopes of linear fit, P=.45). A total of 45% of people with dementia met criteria for hypertension. People with dementia with α-synuclein-related dementia had lower systolic blood pressure; 30% had clinically significant weight loss. Depending on the criteria used, 3.03%-9.46% of measurements generated alerts, at 0.066-0.233 per day per person with dementia. We also report 4 case studies, highlighting the potential benefits and challenges of remote physiological monitoring in people with dementia. These include case studies of people with dementia developing acute infections and one of a person with dementia developing symptomatic bradycardia while taking donepezil. CONCLUSIONS: We present findings from a study of the physiology of people with dementia recorded remotely on a large scale. People with dementia and their carers showed acceptable compliance throughout, supporting the feasibility of the system. Our findings inform the development of technologies, care pathways, and policies for IoT-based remote monitoring. We show how IoT-based monitoring could improve the management of acute and chronic comorbidities in this clinically vulnerable group. Future randomized trials are required to establish if a system like this has measurable long-term benefits on health and quality of life outcomes.
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Cannabis has long been widely used throughout the prenatal period. However, motives for prenatal cannabis use (PCU) have not been comprehensively examined. Stigmatization has been identified as a barrier to therapeutic cannabis use and related physician communication. Such stigma may be particularly salient in the context of PCU. One hundred and three women who reported current or past pregnancy were recruited online. Participants completed a survey querying prenatal experiences, substance use, and attitudes toward PCU. PCU was reported by 35 (34%) respondents. Treating nausea and vomiting of pregnancy was the most frequently reported reason for PCU (89%), and 24 (69%) reported substituting cannabis for pharmaceutical drugs. Sixty-two percent of PCU participants and 31% of non-PCU participants indicated discomfort discussing PCU with their physician, and 74% of PCU participants and 27% of non-PCU participants indicated they would not disclose PCU to their physician if it occurred in future pregnancies. Our findings suggest that PCU may reflect primarily therapeutic motives of relieving symptoms of morning sickness, nausea, low appetite, pain, and substituting for other prescription medications. Respondents reported discomfort discussing PCU with physicians, which was more pronounced among respondents with lived experience of PCU. Findings suggest PCU might best be evaluated within a therapeutic framework and highlight the importance of efforts to enhance patient-caregiver communication regarding PCU.
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AIM: Variation in major gastrointestinal surgery rates in the older population suggests heterogeneity in surgical management. A higher prevalence of comorbidities, frailty and cognitive impairments in the older population may account for some variation. The aim of this study was to determine surgeon preference for major surgery versus conservative management in hypothetical patient scenarios based on key attributes. METHOD: A survey was designed according to the discrete choice methodology guided by a separate qualitative study. Questions were designed to test for associations between key attributes (age, comorbidity, urgency of presentation, pathology, functional and cognitive status) and treatment preference for major gastrointestinal surgery versus conservative management. The survey consisting of 18 hypothetical scenarios was disseminated electronically to UK gastrointestinal surgeons. Binomial logistic regression was used to identify associations between the attributes and treatment preference. RESULTS: In total, 103 responses were received after 256 visits to the questionnaire site (response rate 40.2%). Participants answered 1847 out of the 1854 scenarios (99.6%). There was a preference for major surgery in 1112/1847 (60.2%) of all scenarios. Severe comorbidities (OR 0.001, 95% CI 0.000-0.030; P = 0.000), severe cognitive impairment (OR 0.001, 95% CI 0.000-0.033; P = 0.000) and age 85 years and above (OR 0.028, 95% CI 0.005-0.168; P = 0.000) were all significant in the decision not to offer major gastrointestinal surgery. CONCLUSION: This study has demonstrated variation in surgical treatment preference according to key attributes in hypothetical scenarios. The development of fitness-stratified guidelines may help to reduce variation in surgical practice in the older population.
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Procedimientos Quirúrgicos del Sistema Digestivo , Cirujanos , Humanos , Anciano , Anciano de 80 o más Años , Conducta de Elección , Encuestas y Cuestionarios , Comorbilidad , Prioridad del Paciente/psicologíaRESUMEN
Lab-based studies examining the effects of cannabis administration on human behavior compromise ecological validity due to the influence of set and setting. Contextual factors of clinical settings have long been recognized as producing measurable changes in physiology, emotionality, and cognition. Among people who use drugs, these settings may be associated with higher levels of perceived stigma and stereotype threat which may meaningfully confound the effects of cannabis on outcomes of interest. Recent liberalization of cannabis regulation may allow novel and more ecologically valid approaches to assessing the acute effects of cannabis. The Naturalistic Cannabis Administration Protocol (NCAP) is a novel paradigm for the study of acute cannabis effects in an ecologically valid manner. Two independent studies demonstrated the safety and feasibility of the NCAP. Participants (N= 79; Mage = 25.44, SD = 5.67) self-administered the cannabis of their choice in their home and then (Study 1; n= 47) engaged in a leisure activity or (Study 2; n= 32) underwent cognitive assessment remotely via videoconference following cannabis administration. The NCAP was well tolerated across samples with no reported adverse events. These findings provide a rationale for the adoption of the NCAP to reduce research barriers and develop our research capabilities to fit the landscape of cannabis use today.