An uncertain future, deep uncertainty, scenarios, robustness and adaptation: How do they fit together?

A highly uncertain future due to changes in climate, technology and socio-economics has led to the realisation that identification of “best-guess” future conditions might no longer be appropriate. Instead, multiple plausible futures need to be considered, which requires (i) uncertainties to be described with the aid of scenarios that represent coherent future pathways based on different sets of assumptions, (ii) system performance to be represented by metrics that measure insensitivity (i.e. robustness) to changes in future conditions, and (iii) adaptive strategies to be considered alongside their more commonly used static counterparts. However, while these factors have been considered in isolation previously, there has been a lack of discussion of the way they are connected. In order to address this shortcoming, this paper presents a multidisciplinary perspective on how the above factors fit together to facilitate the devel- opment of strategies that are best suited to dealing with a deeply uncertain future

Quantification of In-Hospital Patient Mobilization after Cardiac Surgery using Accelerometers: There is More than Meets the Eye

Purpose Patients after cardiac surgery infrequently mobilize during their surgical ward stay. Patients are unaware why mobilization is important, and patients’ progress of mobilization activities is not available. The aim of this study was to use accelerometers with artificial intelligence algorithms for quantification of in-hospital mobilization after cardiac surgery. Methods Six static and dynamic patient activities were defined to measure patient mobilization. An accelerometer (AX3, Axivity) was postoperatively placed on both the upper arm and upper leg. An artificial neural network algorithm classified lying in bed, sitting in a chair, standing, walking, cycling on an exercise bike, and walking the stairs. The primary endpoint was each activity duration performed between 7 a.m. and 11 p.m. Secondary endpoints were length of intensive care unit stay and surgical ward stay. A subgroup analysis was performed for male and female patients. Results In total, 29 patients were classified after cardiac surgery with an intensive care unit stay of 1 (1–2) night and surgical ward stay of 5 (3–6) nights. Patients spent 41 (20–62) min less time in bed for each following hospital day (p<0.001). Standing (p=0.004), walking (p<0.001), and walking the stairs (p=0.001) increased during hospital stay. No differences between men (n=22) and women (n=7) were observed for all endpoints. Conclusion The approach presented in this study is applicable for measuring all six activities and for monitoring postoperative recovery of cardiac surgery patients. A next step is to provide tailored feedback to patients and healthcare professionals, to speed up recovery

A good beginning:study protocol for a group-randomized trial to investigate the effects of sit-to-stand desks on academic performance and sedentary time in primary education

Background Sedentary behavior is associated with health risks and academic under-achievement in children. Still, children spend a large part of their waking hours sitting at a desk at school. Recent short-term studies demonstrated the potential of sit-to-stand desks to reduce sitting time in primary education. The program of "A Good Beginning" was conceived to assess the long-term effects of sit-to-stand desks on sitting time in primary education, and to examine how sit-to-stand desks versus regular desks relate to academic performance, and measures of executive functioning, health and wellbeing. The present paper describes the design of this group-randomized trial, which started in 2017 and will be completed in 2019. Methods Children of two grade-three groups (age 8-9) following regular primary education in Leiden, The Netherlands, were recruited. A coin toss determined which group is the experimental group; the other group is the control group. All children in the experimental group received sit-to-stand desks. They are invited and motivated to reduce sedentary time at school, however, it is their own choice to sit or stand. Children in the control group use regular desks. Otherwise, both groups receive regular treatment. Outcomes are assessed at baseline (T0) and at five follow-up sessions (T1-T5) alternately in winter and summer seasons over three academic years. Primary outcome measures are academic performance, and the proportion of sitting time at school, measured with a 3D accelerometer. Secondary outcome measures are a number of measures related to executive functioning (e.g., N-back task for working memory), health (e.g., height and weight for BMI), and wellbeing (e.g., KIDSCREEN-52 for Quality of Life). Discussion A Good Beginning is a two-and-a-half-year research program, which aims to provide a better understanding of the long-term effects of sit-to-stand desks on sedentary time at school and the relation between sitting time reduction and academic performance, executive functioning, health and wellbeing. The findings may serve as useful information for policy making and practical decision making for school and classroom environments

The social licence for data-intensive health research: towards co-creation, public value and trust

BACKGROUND: The rise of Big Data-driven health research challenges the assumed contribution of medical research to the public good, raising questions about whether the status of such research as a common good should be taken for granted, and how public trust can be preserved. Scandals arising out of sharing data during medical research have pointed out that going beyond the requirements of law may be necessary for sustaining trust in data-intensive health research. We propose building upon the use of a social licence for achieving such ethical governance. MAIN TEXT: We performed a narrative review of the social licence as presented in the biomedical literature. We used a systematic search and selection process, followed by a critical conceptual analysis. The systematic search resulted in nine publications. Our conceptual analysis aims to clarify how societal permission can be granted to health research projects which rely upon the reuse and/or linkage of health data. These activities may be morally demanding. For these types of activities, a moral legitimation, beyond the limits of law, may need to be sought in order to preserve trust. Our analysis indicates that a social licence encourages us to recognise a broad range of stakeholder interests and perspectives in data-intensive health research. This is especially true for patients contributing data. Incorporating such a practice paves the way towards an ethical governance, based upon trust. Public engagement that involves patients from the start is called for to strengthen this social licence. CONCLUSIONS: There are several merits to using the concept of social licence as a guideline for ethical governance. Firstly, it fits the novel scale of data-related risks; secondly, it focuses attention on trustworthiness; and finally, it offers co-creation as a way forward. Greater trust can be achieved in the governance of data-intensive health research by highlighting strategic dialogue with both patients contributing the data, and the public in general. This should ultimately contribute to a more ethical practice of governance

Physicians' experiences with euthanasia: a cross-sectional survey amongst a random sample of Dutch physicians to explore their concerns, feelings and pressure

BACKGROUND: Physicians who receive a request for euthanasia or assisted suicide may experience a conflict of duties: the duty to preserve life on the one hand and the duty to relieve suffering on the other hand. Little is known about experiences of physicians with receiving and granting a request for euthanasia or assisted suicide. This study, therefore, aimed to explore the concerns, feelings and pressure experienced by physicians who receive requests for euthanasia or assisted suicide. METHODS: In 2016, a cross-sectional study was conducted. Questionnaires were sent to a random sample of 3000 Dutch physicians. Physicians who had been working in adult patient care in the Netherlands for the last year were included in the sample (n = 2657). Half of the physicians were asked about the most recent case in which they refused a request for euthanasia or assisted suicide, and half about the most recent case in which they granted a request for euthanasia or assisted suicide. RESULTS: Of the 2657 eligible physicians, 1374 (52%) responded. The most reported reason not to participate was lack of time. Of the respondents, 248 answered questions about a refused euthanasia or assisted suicide request and 245 about a granted EAS request. Concerns about specific aspects of the euthanasia and assisted suicide process, such as the emotional burden of preparing and performing euthanasia or assisted suicide were commonly reported by physicians who refused and who granted a request. Pressure to grant a request was mostly experienced by physicians who refused a request, especial

Successful Pulmonary Endarterectomy in a Patient with Klinefelter Syndrome

Klinefelter syndrome (KS) is a frequent genetic disorder due to one or more supernumerary X chromosomes. KS is associated with an increased risk for venous thromboembolic events like deep venous thrombosis and pulmonary embolism. This paper describes a 37-year-old male patient with KS referred to our tertiary center with chronic thromboembolic pulmonary hypertension, and who was successfully treated by pulmonary endarterectomy

Barriers and facilitators for healthcare professionals to the implementation of Multidisciplinary Timely Undertaken Advance Care Planning conversations at the outpatient clinic (the MUTUAL intervention): a sequential exploratory mixed-methods study

BACKGROUND: Advance Care Planning (ACP) enables patients to define and discuss their goals and preferences for future medical treatment and care. However, the structural implementation of ACP interventions remains challenging. The Multidisciplinary Timely Undertaken Advance Care Planning (MUTUAL) intervention has recently been developed which takes into account existing barriers and facilitators. We aimed to evaluate the MUTUAL intervention and identify the barriers and facilitators healthcare professionals experience in the implementation of the MUTUAL intervention and also to identify suggestions for improvement. METHODS: We performed a sequential exploratory mixed-methods study at five outpatient clinics of one, 300-bed, non-academic hospital. Firstly, semi-structured interviews were performed with a purposive sample of healthcare professionals. The content of these interviews was used to specify the Measurement Instrument for Determinants of Innovations (MIDI). The MIDI was sent to all healthcare professionals. The interviews and questionnaires were used to clarify the results. RESULTS: Eleven healthcare professionals participated in the interviews and 37 responded to the questionnaire. Eight barriers and 20 facilitators were identified. Healthcare professionals agreed that the elements of the MUTUAL intervention are clear, correct, complete, and simple - and the intervention is relevant for patients and their proxies. The main barriers are found within the user and the organisational domain. Barriers related to the organisation include: inadequate replacement of staff, insufficient staff, and insufficient time to introduce and invite patients. Several suggestions for improvement were made. CONCLUSION: Our results show that healthcare professionals positively evaluate the MUTUAL intervention and are very receptive to implementing the MUTUAL intervention. Taking into account the suggestions for improvement may enhance further implementation