Public perceptions of advance care planning (ACP) from an international perspective: a scoping review.

BACKGROUND: Advance Care Planning (ACP) helps people discuss personal values, goals and priorities regarding future care with family and professionals. It can support care coordination and guide decision-making as health deteriorates. However, uptake remains low internationally. Poor communication and information due to Covid-19 pressures exacerbated public and professional criticism and concerns. Recent recommendations highlight the importance of understanding and addressing public perceptions about ACP combined with person-centred approaches to ACP conversations. OBJECTIVES: To explore public perceptions of ACP to inform increased public engagement and empowerment. METHODS: Joanna Briggs Institute methodology was applied in a rapid scoping review. Three databases (Embase, MEDLINE, APA PsycInfo) were searched for English language reviews and primary or secondary research studies from 2015 to 2021. Following title and abstract review, two researchers screened full-text articles and performed data extraction independently using Covidence. Charted data were analysed for themes and subthemes starting with two recent published reviews. Emerging findings were added and data synthesis reviewed by the research team, including public-patient representatives, to achieve consensus. RESULTS: Of 336 studies, 20 included reviews and research papers represented diverse public views, situations and contexts. Studies found poor public knowledge of ACP and widespread perceptions of confusing or accessible information. Multiple reports described little personal relevance, perceived risks of emotional distress, fears, mistrust and misconceptions about the purpose and scope of ACP. Studies identified public concerns stemming from reluctance to discuss death and dying despite this being just one aspect of ACP. Research with minority communities and marginalised groups found intensified concerns. Some studies cited people who valued maintaining autonomy by expressing their goals and preferences. CONCLUSIONS: Studies reviewed found many members of the public had negative or unclear perceptions of ACP. Improved knowledge and understanding appeared to influence perceptions of ACP but were not considered sufficient to change behaviours. The research provided valuable insights from members of the public that could inform current professional and societal debates about the future of ACP. Findings point to a need for novel approaches to ACP public information and involvement whilst bearing in mind societal norms, diverse cultures and contexts.

Integrating lived experiences of out-of-hours health services for people with palliative and end-of-life care needs with national datasets for people dying in Scotland in 2016: A mixed methods, multi-stage design.

BACKGROUND: Unscheduled care is used increasingly during the last year of life by people known to have significant palliative care needs. AIM: To document the frequency and patterns of use of unscheduled healthcare by people in their last year of life and understand the experiences and perspectives of patients, families and professionals about accessing unscheduled care out-of-hours. DESIGN: A mixed methods, multi-stage study integrating a retrospective cohort analysis of unscheduled healthcare service use in the last year of life for all people dying in Scotland in 2016 with qualitative data from three regions involving service users, bereaved carers and general practitioners. SETTING: Three contrasting Scottish Health Board regions and national datasets for the whole of Scotland. RESULTS: People who died in Scotland in 2016 (n = 56,407) had 472,360 unscheduled contacts with one of five services: telephone advice, primary care, ambulance service, emergency department and emergency hospital admission. These formed 206,841 individual continuous unscheduled care pathways: 65% starting out-of-hours. When accessing healthcare out-of-hours, patients and carers prioritised safety and a timely response. Their choice of which service to contact was informed by perceptions and previous experiences of potential delays and whether the outcome might be hospital admission. Professionals found it difficult to practice palliative care in a crisis unless the patient had previously been identified. CONCLUSION: Strengthening unscheduled care in the community, together with patient and public information about how to access these services could prevent hospital admissions of low benefit and enhance community support for people living with advanced illness.

Core Outcome Measures for Palliative and End-of-Life Research After Severe Stroke: Mixed-Method Delphi Study.

Background and Purpose: Stroke is the second commonest cause of death worldwide and a leading cause of severe disability, yet there are no published trials of palliative care in stroke. To design and evaluate palliative care interventions for people with stroke, researchers need to know what measurable outcomes matter most to patients and families, stroke professionals, and other service providers. Methods: A multidisciplinary steering group of professionals and laypeople managed the study. We synthesized recommendations from respected United Kingdom and international consensus documents to generate a list of outcome domains and then performed a rapid scoping literature review to identify potential outcome measures for use in future trials of palliative care after stroke. We then completed a 3-round, online Delphi survey of professionals, and service users to build consensus about outcome domains and outcome measures. Finally, we held a stakeholder workshop to review and finalize this consensus. Results: We generated a list of 36 different outcome domains from 4 key policy documents. The rapid scoping review identified 43 potential outcome measures that were used to create a shortlist of 16 measures. The 36 outcome domains and 16 measures were presented to a Delphi panel of diverse healthcare professionals and lay service users. Of 48 panelists invited to take part, 28 completed all 3 rounds. Shared decision-making and quality of life were selected as the most important outcome domains for future trials of palliative care in stroke. Additional comments highlighted the need for outcomes to be feasible, measurable, and relevant beyond the initial, acute phase of stroke. The stakeholder workshop endorsed these results. Conclusions: Future trials of palliative care after stroke should include pragmatic outcome measures, applicable to the evolving patient and family experiences after stroke and be inclusive of shared decision-making and quality of life.

Disrupted biographies and balancing identities: A qualitative study of cancer patients' communication with healthcare professionals about dependent children.

OBJECTIVE: About 14% of cancer patients live with dependent children. Healthcare professionals are well placed to help patients support their children as part of a patient-centred practice. Children tend to appreciate open communication during the course of illness, but patients often find this difficult. However, research is unclear about patients' preferences and their willingness to talk with healthcare professionals about their dependent children. METHODS: We conducted 15 in-depth interviews with patients from haematological (N = 11) and gynaecological oncology (N = 4). The interviews and subsequent analysis focused on patients' communicative preferences, taking the theoretical framework of "biographical disruption" as a starting point and using Jenkins' concept of identity as a social, relational and dynamic process. RESULTS: We identified two overall identities at stake for seriously ill patients with parental responsibility: "patient identity" and "parent identity." As "patients," patients were ambivalent about relating to their children, but as "parents" they wanted healthcare professionals to talk about their children. CONCLUSION: In order to be patient-centred, clinicians should, we suggest, acknowledge that patients have these conflicting perspectives and identities, which surface at various times and situations throughout their illness trajectories. Research is needed to further explore these findings in different illness groups and cultures.

Contribution of uncertainty in estimation of active drag using assisted towing method in front crawl swimming.

Active drag force in swimming can be calculated from a function of five different variables: swim velocity, tow velocity, belt force, power output and exponent of velocity. The accuracy of the drag force value is dependent on the accuracy of each variable, and on the contribution of each variable to drag estimation. To calculate uncertainty in drag value, first the derivatives of the active drag equation with respect to each variable were obtained. Second, these were multiplied by the uncertainty of that variable. Twelve national age and open level swimmers were recruited to complete four free swimming and five active drag trials. The uncertainties for the free and the tow swim velocities, and for the belt force, contributed approximately 5-6% and 2-3% error, respectively, in calculation of drag. The result of the uncertainty of the velocity exponent (1.8-2.6) indicated a contribution of about 6% error in active drag. The contribution of unequal power output showed that if a power changed 7.5% between conditions, it would lead to about 30% error in calculated drag. Consequently, if a swimmer did not maintain constant power output between conditions, there would be substantial errors in the calculation of active drag.

The Role of the Hand During Freestyle Swimming.

The connections between swimming technique and the fluid dynamical interactions they generate are important for assisting performance improvement. Computational fluid dynamics (CFD) modeling provides a controlled and unobtrusive way for understanding the fundamentals of swimming. A coupled biomechanical-smoothed particle hydrodynamics (SPH) fluid model is used to analyze the thrust and drag generation of a freestyle swimmer. The swimmer model was generated using a three-dimensional laser body scan of the athlete and digitization of multi-angle video footage. Two large distinct peaks in net streamwise thrust are found during the stroke, which coincide with the underwater arm strokes. The hand motions generate vortical structures that travel along the body toward the kicking legs and the hands are shown to produce thrust using both lift and drag. These findings advance understanding of the freestyle stroke and may be used to improve athlete technique.

Improving primary palliative care in Scotland: lessons from a mixed methods study.

BACKGROUND: Since 2012, all GP practices across Scotland have been supported to take a systematic approach to end-of-life care, by helping them to identify more patients for palliative care through a Palliative Care Directed Enhanced Service (DES). We aimed to understand the impact of this initiative. METHODS: Routine quantitative data from the 2012/13, and 2013/14 DES were collected from regional health boards, analysed and discussed. Qualitative data were collected from a sample of 2012/13 DES returns and analysed using Thematic Analysis. RESULTS: Data were received from 512 practices in nine Scottish Health boards for the 2012-13 DES and 638 practices in 11 Health boards for 2013-14. A sample of 90 of the returns for 2012-13 was selected for qualitative analysis. In 2012-13, 72 % of patients who died of cancer were listed on the palliative care register (PCR) before death while 27 % of patients who died as a result of non-malignant conditions were listed on the PCR. In 2013-14, cancer identification remained the same but identification of people dying with other long-term conditions had improved to 32.5 %. We identified several key issues needed to improve palliative care in the community. The need for training to identify patients with palliative care needs (particularly non-cancer); communication skills training; improvements in sharing information across the NHS; under-resource of and lack of coordination with district nurses; improvements in information technology; and tools for working with enlarged palliative care registers. CONCLUSIONS: The DES helped more patients with long-term conditions (LTC) receive generalist palliative care. Approaching generalist palliative care as anticipatory care could facilitate communication between GPs and patients/families and remove some barriers to early identification of palliative care needs. Improvement of information technology and use of identification tools like the SPICT™ may improve professionals' communication with each other and help may make identification and management of patients easier.

Developing a computerised search to help UK General Practices identify more patients for palliative care planning: a feasibility study.

BACKGROUND: Approximately 600,000 people die in the UK annually, usually after months or years of increasing debility. Many patients with advanced conditions are not identified for appropriate support before they die because they are not seen as having "palliative" care needs. General practice information technology systems can improve care by identifying patients with deteriorating health so that their healthcare needs can be reviewed more systematically and effectively. The aim was to develop and test a computerised search of primary care records in routine clinical practice as a tool to improve patient identification for a palliative care approach. METHODS: An iterative process of search design and testing followed by implementation and extended testing of the search output in clinical practice. A three-phase feasibility study: developing a computerised search, determining its ability to identify patients with deteriorating health from any advanced condition, and assessing how primary care clinicians use the results to improve patient care. The setting was twelve primary care teams in two Health Boards in Scotland. RESULTS: The search identified 0.6-1.7 % of patients in each practice who were not already on the palliative care register. Primary care clinicians judged that 30-60 % of these patients were at risk of dying or deterioration over the next 6-12 months. The most common action taken by GPs was to start an electronic anticipatory care plan. CONCLUSIONS: It is possible to significantly improve the identification of patients for palliative care needs assessment using a computerised search however barriers remain to GPs' finding it acceptable. Time-efficient systems were important as was a generic tool for anticipatory care planning not linked to 'palliative' care.

Coordination of end-of-life care for patients with lung cancer and those with advanced COPD: are there transferable lessons? A longitudinal qualitative study.

BACKGROUND: Care coordination is defined as good communication between professionals to enable access to services based on need. AIMS: To explore patients' experience of care coordination in order to inform current debates on how best to coordinate care and deliver services in end-of-life for patients with lung cancer and those with chronic obstructive pulmonary disease (COPD). METHODS: A qualitative study involving serial interviews was performed in 18 patients recruited from three hospital outpatient clinics situated in a hospital. Interviews were transcribed verbatim and data were analysed thematically. RESULTS: Data comprised 38 interviews. Patients experiencing services related to lung cancer reported good access enabled by the involvement of a keyworker. This contrasted with COPD patients' experiences of services. The keyworker coordinated care between and within clinical settings, referred patients to community palliative care services, helped them with financial issues, and provided support. CONCLUSIONS: For patients with lung cancer, the keyworker's role augmented access to various services and enabled care based on their needs. The experiences of patients with COPD highlight the importance of providing a keyworker for this group of patients in both secondary and primary care.

Palliative care staff's perceptions of do not attempt cardiopulmonary resuscitation discussions.

BACKGROUND: Do not attempt cardiopulmonary resuscitation (DNACPR) decisions aim to prevent unwanted and/or clinically inappropriate CPR attempts. As the NHS Scotland DNACPR policy has become embedded into clinical practice there has been greater awareness of the need to discuss DNACPR decisions with patients who would not benefit from CPR; however, little is known about how nursing and medical staff experience these discussions. AIM: This study aimed to explore clinician experiences of discussing DNACPR decisions with patients in a Scottish specialist palliative care inpatient and community setting. METHOD: Semi-structured face-to-face interviews were held with 11 specialist palliative care clinicians. These were transcribed and thematic analysis was undertaken. RESULTS: The clinicians found DNACPR discussions challenging and experienced anxiety before discussions took place. They found it most appropriate to discuss DNACPR in the context of wider end-of-life discussions and in response to patient triggers. Patient-clinician relationships were complex and could make the conversation easier or more difficult. Negative patient reactions were rare and discussions were thought to provide some patients with a sense of relief. CONCLUSION: The clinicians reported finding DNACPR discussions worthwhile and that they continue to discuss DNACPR decisions with patients despite the challenges. Recommendations for discussing DNACPR with patients are outlined.

A biomechanical review of the techniques used to estimate or measure resistive forces in swimming.

Resistive or drag forces encountered during free swimming greatly influence the swim performance of elite competitive swimmers. The benefits in understanding the factors which affect the drag encountered will enhance performance within the sport. However, the current techniques used to experimentally measure or estimate drag values are questioned for their consistency, therefore limiting investigations in these factors. This paper aims to further understand how the resistive forces in swimming are measured and calculated. All techniques outlined demonstrate both strengths and weaknesses in the overall assessment of free swimming. By reviewing all techniques in this area, the reader should be able to select which one is best depending on what researchers want to gain from the testing.

Pitching effects of buoyancy during four competitive swimming strokes.

The purpose of this study was to determine the pitching effects of buoyancy during all competitive swimming strokes--freestyle, backstroke, butterfly, and breaststroke. Laser body scans of national-level athletes and synchronized multiangle swimming footage were used in a novel markerless motion capture process to produce three-dimensional biomechanical models of the swimming athletes. The deforming surface meshes were then used to calculate swimmer center-of-mass (CoM) positions, center-of-buoyancy (CoB) positions, pitch buoyancy torques, and sagittal plane moments of inertia (MoI) throughout each stroke cycle. In all cases the mean buoyancy torque tended to raise the legs and lower the head; however, during part of the butterfly stroke the instantaneous buoyancy torque had the opposite effect. The swimming strokes that use opposing arm and leg strokes (freestyle and backstroke) had smaller variations in CoM positions, CoB positions, and buoyancy torques. Strokes with synchronized left-right arm and leg movement (butterfly and breaststroke) had larger variations in buoyancy torques, which impacts the swimmer's ability to maintain a horizontal body pitch for these strokes. The methodology outlined in this paper enables the rotational effects of buoyancy to be better understood by swimmers, allowing better control of streamlined horizontal body positioning during swimming to improve performance.

Perturbation of thermal unfolding and aggregation of human IgG1 Fc fragment by Hofmeister anions.

The thermal unfolding and subsequent aggregation of the unglycosylated Fc fragment of a human IgG1 antibody (Fc) were studied in the salt solutions of Na(2)SO(4), KF, KCl and KSCN at pH 4.8 and 7.2 below and at its pI of 7.2, respectively, using differential scanning calorimetry (DSC), far ultraviolet circular dichroism (far-UV CD), size exclusion chromatography (SE-HPLC) and light scattering. First, our experimental results demonstrated that the thermal unfolding of the C(H)2 domain of the Fc was sufficient to induce aggregation. Second, at both pH conditions, the anions (except F(-)) destabilized the C(H)2 domain where the effectiveness of SO(4)(2-) > SCN(-) > Cl(-) > F(-) was more apparent at pH 4.8. In addition, the thermal stability of the C(H)2 domain was less sensitive to the change in salt concentration at pH 7.2 than at pH 4.8. Third, at pH 4.8 when the Fc had a net positive charge, the anions accelerated the aggregation reaction with SO(4)(2-) > SCN(-) > Cl(-) > F(-) in effectiveness. But these anions slowed down the aggregation kinetics at pH 7.2 with similar effectiveness when the Fc was net charge neutral. We hypothesize that the effectiveness of the anion on destabilizing the C(H)2 domain could be attributed to its ability to perturb the free energy for both of the native and unfolded states. The effect of the anions on the kinetics of the aggregation reaction could be interpreted based on the modulation of the electrostatic protein-protein interactions by the anions.

Proactive cancer care in primary care: a mixed-methods study.

BACKGROUND: Current models of post-treatment cancer care are based on traditional practices and clinician preference rather than evidence of benefit. OBJECTIVES: To assess the feasibility of using a structured template to provide holistic follow-up of patients in primary care from cancer diagnosis onwards. METHODS: A two-phase mixed methods action research project. An electronic cancer ongoing review document (CORD) was first developed with patients and general practitioners, and used with patients with a new diagnosis of cancer. This was evaluated through documentary analysis of the CORDs, qualitative interviews with patients, family carers and health professionals and record reviews. RESULTS: The records of 107 patients from 13 primary care teams were examined and 45 interviews conducted. The document was started in 54% of people with newly diagnosed cancer, and prompted clear documentation of multidimension needs and understanding. General practitioners found using the document helped to structure consultations and cover psychosocial areas, but they reported it needed to be better integrated in their medical records with computerized prompts in place. Few clinicians discussed the review openly with patients, and the template was often completed afterwards. CONCLUSIONS: Anticipatory cancer care from diagnosis to cure or death, 'in primary care', is feasible in the U.K. and acceptable to patients, although there are barriers. The process promoted continuity of care and holism. A reliable system for proactive cancer care in general practice supported by hospital specialists may allow more survivorship care to be delivered in primary care, as in other long-term conditions.

A Practical Tool for Risk-Based In-use Compatibility Assessments.

In drug development, in-use compatibility studies are crucial steps to ensure that the critical quality attributes of the drug product are maintained when in contact with administration components. But once the drug is in clinical trials, unanticipated variations in these components can stretch limited resources and lengthen timelines to market, as these changes must be assessed and approved to ensure continued patient safety. It's desirable to use a science-based risk evaluation to determine the extent of data and testing needed in these situations, but there is no standard for how such evaluations are done. We have developed an Excel™-based semi-quantitative risk assessment tool to determine whether in-use testing is needed when drug delivery sites or components are changed during a clinical trial. We developed the tool based on our multi-company experience with compatibility studies for many types of drug products targeted for various geographic regions. We have employed the tool as a means to expedite decision-making and, if appropriate, reduce testing in low-risk situations. The tool can save significant time and effort (our estimate is approximately at least 6-9 months off the development cycle) and can minimize pitfalls in clinical administration. While we have designed the tool for our drug products and for use with parenteral dosing regimens, the tool can be adapted for other situations as needed. It will be especially useful for companies with more limited resources.

Online public information about advance care planning: An evaluation of UK and international websites.

Introduction: Healthcare information is increasingly internet-based. Standards require websites to be 'perceivable, operable, understandable and robust' with relevant content for citizens in appropriate language. This study examined UK and international websites offering public healthcare information on advance care planning (ACP) using current recommendations for website accessibility and content and informed by a public engagement exercise. Methods: Google searches identified websites in English from health service providers, governmental or third sector organisations based in the UK and internationally. Target keywords that would be used by a member of the public informed the search terms. Data extraction used criterion-based assessment and web content analysis of the first two pages of each search result. Public patient representatives as key members of the multidisciplinary research team guided the development of the evaluation criteria. Results: A total of 1158 online searches identified 89 websites, reduced to 29 by inclusion/exclusion criteria. Most sites met international recommendations for knowledge/understanding about ACP. Differences in terminology, lack of information about ACP limitations and non-adherence to recommended reading levels, accessibility standards and translation options were apparent. Sites targeting members of the public used more positive, non-technical language than those for both professional and lay users. Conclusions: Some websites met accepted standards required to facilitate understanding and public engagement in ACP. Others could be improved significantly. Website providers have important roles and responsibilities in increasing people's understanding of their health conditions, future care options and ability to take an active role in planning for their health and care.

"Selecting the right tool for the job" a narrative overview of experimental methods used to measure or estimate active and passive drag in competitive swimming.

Free-swimming performance depends strongly on the ability to develop propulsive force and minimise resistive drag. Therefore, estimating resistive drag (passive or active) may be important to understand how free-swimming performance can be improved. The purpose of this narrative overview was to describe and discuss experimental methods of measuring or estimating active and passive drag relevant to competitive swimming. Studies were identified using a mixed-model approach comprising a search of SCOPUS and Web of Science data bases, follow-up of relevant studies cited in manuscripts from the primary search, and additional studies identified by the co-authors based on their specific areas of fluid dynamics expertise. The utility and limitations of active and passive drag methods were critically discussed with reference to primary research domains in this field, 'swimmer morphology' and 'technique analysis'. This overview and the subsequent discussions provide implications for researchers when selecting an appropriate method to measure resistive forces (active or passive) relevant to improving performance in free-swimming.

The role of the biomechanics analyst in swimming training and competition analysis.

Swimming analysts aid coaches and athletes in the decision-making by providing evidence-based recommendations. The aim of this narrative review was to report the best practices of swimming analysts that have been supporting high-performance athletes. It also aims to share how swimming analysts can translate applied research into practice. The role of the swimming analyst, as part of a holistic team supporting high-performance athletes, has been expanding and is needed to be distinguished from the job scope of a swimming researcher. As testing can be time-consuming, analysts must decide what to test and when to conduct the evaluation sessions. Swimming analysts engage in the modelling and forecast of the performance, that in short- and mid-term can help set races target-times, and in the long-term provide insights on talent and career development. Races can be analysed by manual, semi-automatic or fully automatic video analysis with single or multi-cameras set-ups. The qualitative and quantitative analyses of the swim strokes, start, turns, and finish are also part of the analyst job scope and associated with race performance goals. Land-based training is another task that can be assigned to analysts and aims to enhance the performance, prevent musculoskeletal injuries and monitor its risk factors.

Effect of pH and light on aggregation and conformation of an IgG1 mAb.

During the purification process, monoclonal antibodies may be exposed to parts of UV-C (200 to 290 nm), UV-B (290 to 320 nm) and visible light (400 to 760 nm) under a variety of buffer and pH conditions. Together, these conditions can promote both chemical and physical degradation which may result in conformational changes. To examine this possibility, an IgG1 mAb at pH 3.5, 5, and 8 was exposed to UV light at multiple protein concentrations. Exposure to 302 nm light resulted in a pH-dependent formation of high molecular weight species where the degree of oligomerization increased with increasing pH. Characterization by SDS-PAGE under reducing and nonreducing conditions and size exclusion MALS revealed that the predominant species were nonreducible dimeric, trimeric and higher order oligomeric species which occurred through processes other than intermolecular disulfide bond formation. Biophysical characterization by differential scanning calorimetry demonstrated an overall loss of heat capacity suggesting a loss of conformational integrity with light exposure. A decrease in tryptophan fluorescence was paralleled by a significant decrease in the transition temperature measured during heat-induced unfolding following light exposure, also suggesting a significant change in conformational integrity. The observations by fluorescence spectroscopy coincided with pH-dependent changes in the alterations of secondary structure characterized by Fourier transform infrared spectroscopy and far-UV circular dichroism with the most acidic pH showing the greatest degree of change in the ß-sheet structure. Exposure to UV light resulted in aggregation with pH-dependent yields decreasing in the order 8.0 > 5.0 > 3.5, while the opposite trend was observed for conformational changes, with pH-dependent extents decreasing in the following order 3.5 > 5.0 > 8.0. These pH-dependent trends suggest that different strategies will be required to stabilize the protein against these modifications during processing.