Talk, tools, and tensions: observing biological talk over time

The goal of this study is to explore new tools for analyzing scientific sense making in out-of-school settings. Although such measures are now common in science classroom research, dialogically-based methodological approaches are relatively new to informal learning research. Such out-of-classroom settings have more recently become a breeding ground for new design approaches for tracking scientific talk and ideas within complex data sets. The research reported here seeks to understand the language people do use to make sense of the life sciences over time. Another goal of this study is to track biological themes over time, using a new analytical scheme, Tool for Observing Biological Talk Over Time (TOBTOT). Our analyses are linked to and informed by tensions between particularistic and holistic data collection and analysis, qualitative and quantitative representations, and everyday and formal science discourse. These tensions and our analyses are linked to larger theoretical frameworks and to the recursive interplay between theory and practice

Using routinely collected data to develop and evaluate a clinical tool for early identification of palliative care needs in long-term care: The RESPECT Project.

Objectives Prognostication tools reporting personalized mortality risk and survival can improve advance care planning and discussions about end-of-life care. We developed, validated, and implemented a mortality risk algorithm for older adults with diverse care needs in long-term care (LTC) homes, called the Risk Evaluation for Support: Predictions for Elder-Life in the Community Tool for LTC (RESPECT-LTC). Approach RESPECT-LTC was developed using routinely-collected health information on residents in LTC homes in Ontario, Canada. Model development used a cohort of LTC residents aged 50 years or older with at least 1 Resident Assessment Instrument—Minimum Data Set (RAI-MDS) record between January 2010 and December 2016. The primary outcome was mortality 6 months after a RAI-MDS assessment. We used proportional hazards regression with robust standard errors to account for clustering by the individual. We validated this algorithm, temporally, in a cohort of LTC residents who were assessed between January and December 2017. We constructed 37 risk bins based on incremental increases in estimated median survival of ~3 weeks among residents at high risk of death and 3 months among residents with lower mortality risk. We implemented and are evaluating the use of RESPECT-LTC for early identification of palliative care needs in LTC homes across Ontario. Results Development and validation cohorts included 2,228,176 and 328,204 RAI-MDS assessments, respectively. Mean predicted 6-month mortality risk ranged from 1.38% (95% CI 0.63%-1.61%) in the lowest to 91.97% (95% CI 81.47%-99.9%) in the highest risk group. Estimated median survival spanned from 42 days (15 to 128 d at the 25th and 75th percentiles) in the highest risk group to over 8 years (2,066 to 3,428 d) in the lowest risk group. The algorithm had a c-statistic of 0.730 (95% CI 0.726–0.736) in our validation cohort. Conclusion RESPECT-LTC makes use of routinely-collected information to improve the identification of palliative and end-of-life care needs in LTC. Ongoing evaluation will assess its impact on referrals to palliative care, hospitalization at the end of life, and location of death

Care trajectory in homes care users across mortality-risk profiles: an observational study.

Objectives RESPECT is a prognostic tool, developed using linked population-based data, to predict 6-month mortality in community-dwelling older adults. RESPECT is implemented and openly accessible as a web-based tool on ProjectBigLife.ca, where over 700,000 calculations have been performed to date. Our objective was to describe healthcare utilization patterns among home care (HC) users across mortality risk profiles generated from RESPECT to inform care planning for older persons who have varying mortality risks and levels of care needs as they decline. Approach We conducted a retrospective cohort study examining healthcare use among HC users in Ontario, Canada, who received at least one interRAI HC assessment between April 2018 and September 2019.  Using linked health administrative data at the individual level, we examined the use of acute care (hospitalizations and emergency department (ED) visits), long-term care (LTC), and palliative home care within 6-months of each assessment and prognostication using RESPECT. Mortality risk profiles from RESPECT were created based on the median survival. Results The cohort comprised 247,377 community-dwelling older adults; 14.3% died within 6-months of an assessment. Among decedents, half (51.51%) of HC users with a predicted median survival of less than 3-months received at least one palliative care home visit; 39.17%, 34.82% and 13.84% visited the ED, were hospitalized, or were admitted to LTC, respectively. The proportion of assessments that received at least one palliative HC visit declined to 43.11% and 30.28% of assessments with a median survival between 3- and 6-months and those between 6-months and 12-months, respectively.  The proportion of assessments with an acute care use increases with increasing median survival. Conclusion A considerable proportion of people at the end-of-life do not receive any palliative home care and continued to be institutionalized. This may be indication that the reduced life expectancies and palliative care needs of many older adults are not being recognized, thus demonstrating the value of prognostic models like RESPECT to inform care planning  for individuals in their final years of life

Evidence-based planning and costing palliative care services for children : novel multi-method epidemiological and economic exemplar

Background: Children’s palliative care is a relatively new clinical specialty. Its nature is multi-dimensional and its delivery necessarily multi-professional. Numerous diverse public and not-for-profit organisations typically provide services and support. Because services are not centrally coordinated, they are provided in a manner that is inconsistent and incoherent. Since the first children’s hospice opened in 1982, the epidemiology of life-limiting conditions has changed with more children living longer, and many requiring transfer to adult services. Very little is known about the number of children living within any given geographical locality, costs of care, or experiences of children with ongoing palliative care needs and their families. We integrated evidence, and undertook and used novel methodological epidemiological work to develop the first evidence-based and costed commissioning exemplar. Methods: Multi-method epidemiological and economic exemplar from a health and not-for-profit organisation perspective, to estimate numbers of children under 19 years with life-limiting conditions, cost current services, determine child/parent care preferences, and cost choice of end-of-life care at home. Results: The exemplar locality (North Wales) had important gaps in service provision and the clinical network. The estimated annual total cost of current children’s palliative care was about £5.5 million; average annual care cost per child was £22,771 using 2007 prevalence estimates and £2,437- £11,045 using new 2012/13 population-based prevalence estimates. Using population-based prevalence, we estimate 2271 children with a life-limiting condition in the general exemplar population and around 501 children per year with ongoing palliative care needs in contact with hospital services. Around 24 children with a wide range of life-limiting conditions require end-of-life care per year. Choice of end-of-life care at home was requested, which is not currently universally available. We estimated a minimum (based on 1 week of end-of-life care) additional cost of £336,000 per year to provide end-of-life support at home. Were end-of-life care to span 4 weeks, the total annual additional costs increases to £536,500 (2010/11 prices). Conclusions: Findings make a significant contribution to population-based needs assessment and commissioning methodology in children’s palliative care. Further work is needed to determine with greater precision which children in the total population require access to services and when. Half of children who died 2002-7 did not have conditions that met the globally used children's palliative care condition categories, which need revision in light of findings

A UK survey of COVID‐19 related social support closures and their effects on older people, people with dementia, and carers

Abstract Objectives The aim of this national survey was to explore the impact of COVID‐19 public health measures on access to social support services and the effects of closures of services on the mental well‐being of older people and those affected by dementia. Methods A UK‐wide online and telephone survey was conducted with older adults, people with dementia, and carers between April and May 2020.The survey captured demographic and postcode data, social support service usage before and after COVID‐19 public health measures, current quality of life, depression, and anxiety. Multiple linear regression analysis was used to explore the relationship between social support service variations and anxiety and well‐being. Results 569 participants completed the survey (61 people with dementia, 285 unpaid carers, and 223 older adults). Paired samples t‐tests and X2‐tests showed that the mean hour of weekly social support service usage and the number of people having accessed various services was significantly reduced post COVID‐19. Multiple regression analyses showed that higher variations in social support service hours significantly predicted increased levels of anxiety in people with dementia and older adults, and lower levels of mental well‐being in unpaid carers and older adults. Conclusions Being unable to access social support services due to COVID contributed to worse quality of life and anxiety in those affected by dementia and older adults across the UK. Social support services need to be enabled to continue providing support in adapted formats, especially in light of continued public health restrictions for the foreseeable future. This article is protected by copyright. All rights reserved

Activity Increase Despite Arthritis (AÏDA): design of a Phase II randomised controlled trial evaluating an active management booklet for hip and knee osteoarthritis [ISRCTN24554946]

<p>Abstract</p> <p>Background</p> <p>Hip and knee osteoarthritis is a common cause of pain and disability, which can be improved by exercise interventions. However, regular exercise is uncommon in this group because the low physical activity level in the general population is probably reduced even further by pain related fear of movement. The best method of encouraging increased activity in this patient group is not known. A booklet has been developed for patients with hip or knee osteoarthritis. It focuses on changing disadvantageous beliefs and encouraging increased physical activity.</p> <p>Methods/Design</p> <p>This paper describes the design of a Phase II randomised controlled trial (RCT) to test the effectiveness of this new booklet for patients with hip and knee osteoarthritis in influencing illness and treatment beliefs, and to assess the feasibility of conducting a larger definitive RCT in terms of health status and exercise behaviour. A computerised search of four general medical practice patients' record databases will identify patients older than 50 years of age who have consulted with hip or knee pain in the previous twelve months. A random sample of 120 will be invited to participate in the RCT comparing the new booklet with a control booklet, and we expect 100 to return final questionnaires. This trial will assess the feasibility of recruitment and randomisation, the suitability of the control intervention and outcome measurement tools, and will provide an estimate of effect size. Outcomes will include beliefs about hip and knee pain, beliefs about exercise, fear avoidance, level of physical activity, health status and health service costs. They will be measured at baseline, one month and three months.</p> <p>Discussion</p> <p>We discuss the merits of testing effectiveness in a phase II trial, in terms of intermediate outcome measures, whilst testing the processes for a larger definitive trial. We also discuss the advantages and disadvantages of testing the psychometric properties of the primary outcome measures concurrently with the trial.</p> <p>Trial registration</p> <p>Current Controlled Trials ISRCTN24554946</p

A novel peer-support intervention using motivational interviewing for breastfeeding maintenance: a UK feasibility study

Although most UK mothers start breastfeeding, fewer than half breastfeed exclusively for more than 1 week and only one in 100 breastfeed for > 6 months. Most stop breastfeeding before they had planned to. We wanted to see if it was possible to help women breastfeed for longer by using buddies trained in motivational interviewing. This is a form of counselling that motivates people to change their behaviour by exploring their thoughts and worries and helping them to set their own goals. The intervention we studied was called Mam-Kind. Mam-Kind buddies met mothers before their babies were born and provided support for 2 weeks afterwards. Before we embark on an expensive randomised trial of Mam-Kind, we wanted to see if it was acceptable to women and feasible to deliver. Eight buddies delivered Mam-Kind to 70 women from three areas with high levels of social deprivation and teenage pregnancy and low rates of breastfeeding. We interviewed mothers, buddies and health-care professionals to get their views. We found that Mam-Kind was acceptable and feasible to deliver. Mothers reported that buddies provided reassurance, were non-judgemental and were easily contactable. The buddies reported that it was sometimes difficult to use their motivational skills while providing breastfeeding support. It is feasible to design and collect appropriate health economic information. We used this information to refine the training and content of the intervention. The refined Mam-Kind intervention should now be tested in a controlled study to see if it really works to help women continue breastfeeding for longer

PANC Study (Pancreatitis: A National Cohort Study): national cohort study examining the first 30 days from presentation of acute pancreatitis in the UK

Abstract Background Acute pancreatitis is a common, yet complex, emergency surgical presentation. Multiple guidelines exist and management can vary significantly. The aim of this first UK, multicentre, prospective cohort study was to assess the variation in management of acute pancreatitis to guide resource planning and optimize treatment. Methods All patients aged greater than or equal to 18 years presenting with acute pancreatitis, as per the Atlanta criteria, from March to April 2021 were eligible for inclusion and followed up for 30 days. Anonymized data were uploaded to a secure electronic database in line with local governance approvals. Results A total of 113 hospitals contributed data on 2580 patients, with an equal sex distribution and a mean age of 57 years. The aetiology was gallstones in 50.6 per cent, with idiopathic the next most common (22.4 per cent). In addition to the 7.6 per cent with a diagnosis of chronic pancreatitis, 20.1 per cent of patients had a previous episode of acute pancreatitis. One in 20 patients were classed as having severe pancreatitis, as per the Atlanta criteria. The overall mortality rate was 2.3 per cent at 30 days, but rose to one in three in the severe group. Predictors of death included male sex, increased age, and frailty; previous acute pancreatitis and gallstones as aetiologies were protective. Smoking status and body mass index did not affect death. Conclusion Most patients presenting with acute pancreatitis have a mild, self-limiting disease. Rates of patients with idiopathic pancreatitis are high. Recurrent attacks of pancreatitis are common, but are likely to have reduced risk of death on subsequent admissions. </jats:sec