Creating a Data Dictionary for Pediatric Autonomic Disorders

PURPOSE: Whether evaluating patients clinically, documenting care in the electronic health record, performing research, or communicating with administrative agencies, the use of a common set of terms and definitions is vital to ensure appropriate use of language. At a 2017 meeting of the Pediatric Section of the American Autonomic Society, it was determined that an autonomic data dictionary comprising aspects of evaluation and management of pediatric patients with autonomic disorders would be an important resource for multiple stakeholders. METHODS: Our group created the list of terms for the dictionary. Definitions were prioritized to be obtained from established sources with which to harmonize. Some definitions needed mild modification from original sources. The next tier of sources included published consensus statements, followed by Internet sources. In the absence of appropriate sources, we created a definition. RESULTS: A total of 589 terms were listed and defined in the dictionary. Terms were organized by Signs/Symptoms, Triggers, Co-morbid Disorders, Family History, Medications, Medical Devices, Physical Examination Findings, Testing, and Diagnoses. CONCLUSION: Creation of this data dictionary becomes the foundation of future clinical care and investigative research in pediatric autonomic disorders, and can be used as a building block for a subsequent adult autonomic data dictionary

Cyclic vomiting syndrome in adults

Peer Reviewedhttp://deepblue.lib.umich.edu/bitstream/2027.42/72300/1/j.1365-2982.2008.01113.x.pd

Not All Managers Are Managerial: A Self-Evaluation of Women Middle-Managers' Experiences in a UK University

The focus of this small-scale self-evaluation is the implementation of a new middle-management role in a post-92 UK university. A realist appreciative inquiry was undertaken with five women who had been promoted to a middle-management role 18 months prior to the inquiry. This evaluation for knowledge offered an opportunity to reflect on experiences in practice and sought to understand the experiences of the women in this role and how they cope with the challenges middle-management brings. Particular challenges (instability-generating) accorded with existing literature and included: lack of role clarity, lack of pre-preparation for management role, colleagues’ views of management, including perceptions of women in management roles and malicious intent of managed academics in rare cases. Supportive factors (provisional-stability-generating) included: personal resilience, informal peer support, external support and reflection. The co-evaluators offered reflections for the future from this co-evaluation. These suggest that training may contribute to provisional-stability in role and should be considered for new entrants to middle-management. The alternative construct of humanistic management is proposed as a way of understanding these women’s values-based decision-making practices in complex situations

Evaluation for what purpose? Findings from two stakeholder groups

A host of reasons exist for the pursuit of evidence in the public sector, including to support good governance and policy development. As the expectations for program evaluation from policymakers have evolved, so too has evaluation practice and a great deal of experimentalism has ensued. There is a risk that these developments and the complexity inherent in them, may lead to conflicting expectations about why program evaluation is done, or even a loss of purpose. This prompts the meso-level analysis of two types of stakeholders in a governance network, explored in this chapter. This chapter presents the findings of an ongoing study which explores the perceptions of program evaluators and policy implementers towards the purpose of evidence. The findings suggest that program evaluators and policy implementers have divergent expectations of why and how evaluation data might be used. The findings suggest that program evaluators aspire to support change and enhance the policy domains they serve, whereas policy implementers perceive program evaluation as serving a more governance-/management-orientated role. The chapter demonstrates the complexity of both program evaluation and policy and may have implications for the twin pillars of governance and responsibility at the heart of the book. If governance and responsibility are the twin pillars of sustainability then the complex networks of relationships, expectations, values, and outcomes may need to be considered. The findings also have implications for evaluation commissioners and practitioners, demonstrating the need for the purpose and expectations of program evaluation to be agreed early. The use of program evaluation as a symbolic, aesthetic or structural mechanism also emerges, prompting opportunity for further research, for instance, to explore legitimacy and program evaluation.N/

Beyond the “Toolkit Approach” : arts impact evaluation research and the realities of cultural policy‐making

This article presents a reflection on the possibility and potential advantages of the development of a humanities‐based approach to assessing the impact of the arts, which attempts to move away from a paradigm of evaluation based on a one‐size‐fits‐all model usually reliant on empirical methodologies borrowed from the social sciences. A “toolkit approach” to arts impact assessment, as the article argues, demands excessive simplifications, and its popularity is linked to its perceived advocacy potential rather than to any demonstrable contribution it may make to a genuine understanding of the nature and potential effects of artistic engagement. The article also explores the relationship between research, advocacy and the actual realities of policy‐making with a view to proposing a critical research agenda for impact evaluation based on Carol Weiss’s notion of the “enlightenment” function of policy‐oriented research. In particular, the article attempts to highlight the contribution that cultural policy scholars working within the humanities could make to this area of policy research

Autonomic nervous system testing may not distinguish multiple system atrophy from Parkinson's disease

Background: Formal laboratory testing of autonomic function is reported to distinguish between patients with Parkinson's disease and those with multiple system atrophy (MSA), but such studies segregate patients according to clinical criteria that select those with autonomic dysfunction for the MSA category. Objective: To characterise the profiles of autonomic disturbances in patients in whom the diagnosis of Parkinson's disease or MSA used criteria other than autonomic dysfunction. Methods: 47 patients with parkinsonism and autonomic symptoms who had undergone autonomic laboratory testing were identified and their case records reviewed for non-autonomic features. They were classified clinically into three diagnostic groups: Parkinson's disease (19), MSA (14), and uncertain (14). The performance of the patients with Parkinson's disease was compared with that of the MSA patients on five autonomic tests: RR variation on deep breathing, heart rate changes with the Valsalva manoeuvre, tilt table testing, the sudomotor axon reflex test, and thermoregulatory sweat testing. Results: None of the tests distinguished one group from the other with any statistical significance, alone or in combination. Parkinson's disease and MSA patients showed similar patterns of autonomic dysfunction on formal testing of cardiac sympathetic and parasympathetic, vasomotor, and central and peripheral sudomotor functions. Conclusions: This study supports the clinical observation that Parkinson's disease is often indistinguishable from MSA when it involves the autonomic nervous system. The clinical combination of parkinsonism and dysautonomia is as likely to be caused by Parkinson's disease as by MSA. Current clinical criteria for Parkinson's disease and MSA that direct patients with dysautonomia into the MSA group may be inappropriate

Near-infrared spectroscopy muscle oximetry of patients with postural orthostatic tachycardia syndrome

Postural orthostatic tachycardia syndrome (POTS) is a disabling condition characterized by orthostatic intolerance with tachycardia in the absence of drop-in blood pressure. A custom-built near-infrared spectroscopy device (NIRS) is applied to monitor the muscle oxygenation, noninvasively in patients undergoing incremental head-up tilt table (HUT). Subjects (6 POTS patients and 6 healthy controls) underwent 30mins of 70∘ on a HUT. The results showed a significant difference in deoxyhemoglobin (Hb), change-in-oxygenation (ΔOxy) and blood volume (ΔBV) between patients and healthy controls. However, oxyhemoglobin (HbO2) showed a significantly faster rate of change in the healthy controls during the first 10mins of the tilt and during the recovery. This NIRS muscle oximetry tool provides quantitative measurements of blood oxygenation monitoring in diseases such as POTS