scholarly journals The importance of effective registries in pulmonary diseases and how to optimize their output

2019 ◽  
Vol 16 ◽  
pp. 147997311988177 ◽  
Author(s):  
Joanna Chorostowska-Wynimko ◽  
Marion Wencker ◽  
Ildikó Horváth
Keyword(s):  
Health Care Policy ◽  
Clinical Decision Making ◽  
Clinical Decision ◽  
Outcome Data ◽  
The European Union ◽  
Patient Registries ◽  
General Data Protection Regulation ◽  
Disease Epidemiology ◽  
Alpha 1 Antitrypsin Deficiency ◽  
The Impact

Randomized controlled trials (RCTs) are essential for the approval of new therapies; however, because of their design, they provide little insight concerning disease epidemiology/etiology and current clinical practice. Particularly, in lung disease, rigid inclusion/exclusion criteria can limit the generalizability of pivotal trial data. Noninterventional studies (NIS), conducted through the well-established mechanism of patient registries, are undervalued as a means to close data gaps left by RCTs by providing essential data that can guide patient care at different levels from clinical decision-making to health-care policy. While NIS contribute valuable data in all disease areas, their importance in rare diseases cannot be underestimated. In respiratory disease, registries have been essential in understanding the natural history and different phenotypes of rare conditions, such as alpha 1 antitrypsin deficiency, cystic fibrosis, and idiopathic pulmonary fibrosis. Importantly, additional therapeutic outcome data were generated. While measures for enhancing data quality in RCTs have evolved significantly, the approach and effectiveness of registries is variable. Within this article, we review the contribution of registries to pulmonary disease and make recommendations for their effective management. Additionally, we assess limitations of registry data as well as challenges to registry operation, including the impact of the European Union General Data Protection Regulation.

Religion and Medicine

2020 ◽  
Author(s):  
Jeff Levin ◽  
Stephen G. Post
Keyword(s):  
Clinical Decision Making ◽  
Well Being ◽  
Clinical Decision ◽  
Religion And Medicine ◽  
Physical And Mental Health ◽  
Faith Based ◽  
Baylor University ◽  
Wide Range ◽  
History Of ◽  
The Impact

In Religion and Medicine, Dr. Jeff Levin, distinguished Baylor University epidemiologist, outlines the longstanding history of multifaceted interconnections between the institutions of religion and medicine. He traces the history of the encounter between these two institutions from antiquity through to the present day, highlighting a myriad of contemporary alliances between the faith-based and medical sectors. Religion and Medicine tells the story of: religious healers and religiously branded hospitals and healthcare institutions; pastoral professionals involved in medical missions, healthcare chaplaincy, and psychological counseling; congregational health promotion and disease prevention programs and global health initiatives; research studies on the impact of religious and spiritual beliefs and practices on physical and mental health, well-being, and healing; programs and centers for medical research and education within major universities and academic institutions; religiously informed bioethics and clinical decision-making; and faith-based health policy initiatives and advocacy for healthcare reform. Religion and Medicine is the first book to cover the full breadth of this subject. It documents religion-medicine alliances across religious traditions, throughout the world, and over the course of history. It summarizes a wide range of material of relevance to historians, medical professionals, pastors and theologians, bioethicists, scientists, public health educators, and policymakers. The product of decades of rigorous and focused research, Dr. Levin has produced the most comprehensive history of these developments and the finest introduction to this emerging field of scholarship.

Clinical Conundrums When Integrating the QbTest into a Standard ADHD Assessment of Children and Young People

2021 ◽  
Author(s):  
Carsten Vogt
Keyword(s):  
Clinical Practice ◽  
Clinical Decision Making ◽  
Ecological Validity ◽  
Neuropsychological Test ◽  
Real Life ◽  
Clinical Decision ◽  
Hyperactivity Disorder ◽  
Standard Clinical Practice ◽  
Novel Method ◽  
The Impact

AbstractThe uptake of the QbTest in clinical practice is increasing and has recently been supported by research evidence proposing its effectiveness in relation to clinical decision-making. However, the exact underlying process leading to this clinical benefit is currently not well established and requires further clarification. For the clinician, certain challenges arise when adding the QbTest as a novel method to standard clinical practice, such as having the skills required to interpret neuropsychological test information and assess for diagnostically relevant neurocognitive domains that are related to attention-deficit hyperactivity disorder (ADHD), or how neurocognitive domains express themselves within the behavioral classifications of ADHD and how the quantitative measurement of activity in a laboratory setting compares with real-life (ecological validity) situations as well as the impact of comorbidity on test results. This article aims to address these clinical conundrums in aid of developing a consistent approach and future guidelines in clinical practice.

AAC Assessment and Clinical-Decision Making: The Impact of Experience

2012 ◽  
Vol 28 (3) ◽  
pp. 148-159 ◽  
Author(s):  
Aimee Dietz ◽  
Wendy Quach ◽  
Shelley K. Lund ◽  
Miechelle McKelvey
Keyword(s):  
Decision Making ◽  
Clinical Decision Making ◽  
Clinical Decision ◽  
The Impact

Standardized Synoptic Cancer Pathology Reports — So What and Who Cares?: A Population-Based Satisfaction Survey of 970 Pathologists, Surgeons, and Oncologists

2013 ◽  
Vol 137 (11) ◽  
pp. 1599-1602 ◽  
Author(s):  
Sara Lankshear ◽  
John Srigley ◽  
Thomas McGowan ◽  
Marta Yurcan ◽  
Carol Sawka
Keyword(s):  
Decision Making ◽  
Clinical Decision Making ◽  
Clinical Decision ◽  
Physician Satisfaction ◽  
Cross Sectional ◽  
Cancer Pathology ◽  
Report Turnaround Time ◽  
Significant Difference ◽  
Pathology Reporting ◽  
The Impact

Context.—Cancer Care Ontario implemented synoptic pathology reporting across Ontario, impacting the practice of pathologists, surgeons, and medical and radiation oncologists. The benefits of standardized synoptic pathology reporting include enhanced completeness and improved consistency in comparison with narrative reports, with reported challenges including increased workload and report turnaround time. Objective.—To determine the impact of synoptic pathology reporting on physician satisfaction specific to practice and process. Design.—A descriptive, cross-sectional design was utilized involving 970 clinicians across 27 hospitals. An 11-item survey was developed to obtain information regarding timeliness, completeness, clarity, and usability. Open-ended questions were also employed to obtain qualitative comments. Results.—A 51% response rate was obtained, with descriptive statistics reporting that physicians perceive synoptic reports as significantly better than narrative reports. Correlation analysis revealed a moderately strong, positive relationship between respondents' perceptions of overall satisfaction with the level of information provided and perceptions of completeness for clinical decision making (r = 0.750, P < .001) and ease of finding information for clinical decision making (r = 0.663, P < .001). Dependent t tests showed a statistically significant difference in the satisfaction scores of pathologists and oncologists (t169 = 3.044, P = .003). Qualitative comments revealed technology-related issues as the most frequently cited factor impacting timeliness of report completion. Conclusion.—This study provides evidence of strong physician satisfaction with synoptic cancer pathology reporting as a clinical decision support tool in the diagnosis, prognosis, and treatment of cancer patients.

scholarly journals Clinicians’ experiences of using and implementing a medical mobile phone app (QUiPP V2) designed to predict the risk of preterm birth and aid clinical decision making

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
N. Carlisle ◽  
H. A. Watson ◽  
J. Carter ◽  
K. Kuhrt ◽  
P. T. Seed ◽  
...  
Keyword(s):  
Decision Making ◽  
Preterm Birth ◽  
Cultural Context ◽  
Clinical Decision Making ◽  
Qualitative Interviews ◽  
Scale Up ◽  
Clinical Decision ◽  
Clinical Trial Registry ◽  
Support Tool ◽  
The Impact

Abstract Background As the vast majority of women who present in threatened preterm labour (TPTL) will not deliver early, clinicians need to balance the risks of over-medicalising the majority of women, against the potential risk of preterm delivery for those discharged home. The QUiPP app is a free, validated app which can support clinical decision-making as it produces individualised risks of delivery within relevant timeframes. Recent evidence has highlighted that clinicians would welcome a decision-support tool that accurately predicts preterm birth. Methods Qualitative interviews were undertaken as part of the EQUIPTT study (The Evaluation of the QUiPP app for Triage and Transfer) (REC: 17/LO/1802) which aimed to evaluate the impact of the QUiPP app on management of TPTL. Individual semi-structured telephone interviews were used to explore clinicians’ (obstetricians’ and midwives’) experiences of using the QUiPP app and how it was implemented at their hospital sites. Thematic analysis was chosen to explore the meaning of the data, through a framework approach. Results Nineteen participants from 10 hospital sites in England took part. Data analysis revealed three overarching themes which were: ‘experience of using the app’, ‘how QUiPP risk changes practice’ and ‘successfully adopting QUiPP: context is everything’. With these final themes we appeared to have achieved our aim of exploring the clinicians’ experiences of using and implementing the QUiPP app. Conclusion This study explored different clinician’s experiences of implementing the app. The organizational and cultural context at different sites appeared to have a large impact on how well the QUiPP app was implemented. Future work needs to be undertaken to understand how best to embed the intervention within different settings. This will inform scale up of QUiPP app use across the UK and ensure that clinicians have access to this free, easy-to-use tool which can positively aid clinical decision making when caring for women in TPTL. Clinical trial registry and registration number ISRCTN 17846337, registered 08th January 2018, https://doi.org/10.1186/ISRCTN17846337.

scholarly journals Analysis of Legal and Regulatory Frameworks in Digital Health: A Comparison of Guidelines and Approaches in the European Union and United States

2020 ◽  
Vol 8 ◽  
Author(s):  
Fara Aninha Fernandes ◽  
Georgi V Chaltikyan
Keyword(s):  
United States ◽  
European Union ◽  
Digital Health ◽  
Clinical Decision Support Systems ◽  
Clinical Decision ◽  
The European Union ◽  
Regulatory Pathways ◽  
Regulatory Frameworks ◽  
The Impact ◽  
Regulatory Landscape

The advent of digital technology in healthcare presents opportunities for the improvement of healthcare systems around the world and the move towards value-based treatment. However, this move must be accompanied by strong legal and regulatory frameworks that will not only facilitate but encourage the good use of technology. The goal of the study was to assess the amenability and furtherance of regulatory frameworks in digital health by evaluating and comparing the processes, effectiveness and outcomes of these frameworks in the European Union and United States. Methods: This study incorporated two research methodologies. The first was a research of current legal and regulatory frameworks in digital health in the European Union and United States. A comprehensive online search for publications was carried out which included laws, regulations, policies, green papers, guidelines and recommendations. This research was complemented with interviews of five purposively sampled key informants in the legal and regulatory landscape. Results: Mind-maps revealed key features and challenges of the digital health field in the topics of the current state of regulation of digital health in the EU, Germany and US, regulatory pathways for digital health devices, protection and privacy of health data, mobile health validation, risk-based classification of medical devices, regulation of clinical decision support systems, telemedicine, artificial intelligence and emerging technologies, reimbursement for digital health services and liability for digital health products. The experts expressed and explained key points where current regulation is deficient. The review of the legal frameworks revealed deficiencies which provide opportunities and recommendations to further develop and strengthen the regulatory landscape. Conclusions: A key element to a robust regulatory framework is the ability to ensure trust and confidence in using digital health technology. Technology must measure the impact on quality of life and burden of disease and not merely involve the collection of data.

scholarly journals Exploring the role of the Care and Health Information Exchange (CHIE) in clinical decision-making: a realist evaluation

2020 ◽  
Author(s):  
Philip Scott ◽  
Elisavet Andrikopoulou ◽  
Haythem Nakkas ◽  
Paul Roderick
Keyword(s):  
Decision Making ◽  
Health Information ◽  
Information Exchange ◽  
Healthcare Professionals ◽  
Clinical Decision Making ◽  
Social Care ◽  
Health Information Exchange ◽  
Clinical Decision ◽  
Health And Social Care ◽  
The Impact

Background: The overall evidence for the impact of electronic information systems on cost, quality and safety of healthcare remains contested. Whilst it seems intuitively obvious that having more data about a patient will improve care, the mechanisms by which information availability is translated into better decision-making are not well understood. Furthermore, there is the risk of data overload creating a negative outcome. There are situations where a key information summary can be more useful than a rich record. The Care and Health Information Exchange (CHIE) is a shared electronic health record for Hampshire and the Isle of Wight that combines key information from hospital, general practice, community care and social services. Its purpose is to provide clinical and care professionals with complete, accurate and up-to-date information when caring for patients. CHIE is used by GP out-of-hours services, acute hospital doctors, ambulance service, GPs and others in caring for patients. Research questions: The fundamental question was How does awareness of CHIE or usage of CHIE affect clinical decision-making? The secondary questions were What are the latent benefits of CHIE in frontline NHS operations? and What is the potential of CHIE to have an impact on major NHS cost pressures? The NHS funders decided to focus on acute medical inpatient admissions as the initial scope, given the high costs associated with hospital stays and the patient complexities (and therefore information requirements) often associated with unscheduled admissions. Methods: Semi-structured interviews with healthcare professionals to explore their experience about the utility of CHIE in their clinical scenario, whether and how it has affected their decision-making practices and the barriers and facilitators for their use of CHIE. The Framework Method was used for qualitative analysis, supported by the software tool Atlas.ti. Results: 21 healthcare professionals were interviewed. Three main functions were identified as useful: extensive medication prescribing history, information sharing between primary, secondary and social care and access to laboratory test results. We inferred two positive cognitive mechanisms: knowledge confidence and collaboration assurance, and three negative ones: consent anxiety, search anxiety and data mistrust. Conclusions: CHIE gives clinicians the bigger picture to understand the patient's health and social care history and circumstances so as to make confident and informed decisions. CHIE is very beneficial for medicines reconciliation on admission, especially for patients that are unable to speak or act for themselves or who cannot remember their precise medication or allergies. We found no clear evidence that CHIE has a significant impact on admission or discharge decisions. We propose the use of recommender systems to help clinicians navigate such large volumes of patient data, which will only grow as additional data is collected.

scholarly journals A New Monocyte Epigenetic Clock Reveals Effects of Alcohol Consumption on Epigenetic Aging in Three Independent Cohorts

2021 ◽  
Author(s):  
Xiaoyu Liang ◽  
Rajita Sinha ◽  
Amy C. Justice ◽  
Mardge H. Cohen ◽  
Bradley E. Aouizerat ◽  
...  
Keyword(s):  
Alcohol Consumption ◽  
Hiv Infection ◽  
Clinical Decision Making ◽  
Clinical Decision ◽  
Biological Age ◽  
Biological Aging ◽  
Epigenetic Clock ◽  
Excessive Alcohol Consumption ◽  
Epigenetic Age ◽  
The Impact

AbstractBackgroundExcessive alcohol consumption increases the risk of aging-related comorbidities and mortality. Assessing the impact of alcohol consumption on biological age is important for clinical decision-making and prevention. Evidence shows that alcohol alters monocyte function, and age is associated with DNA methylome and transcriptomic changes among monocytes. However, no monocyte-based epigenetic clock is currently available. In this study, we developed a new monocyte-based DNA methylation clock (MonoDNAmAge) by using elastic net regularization. The MonoDNAmAge was validated by benchmarking using epigenetic age acceleration (EAA) in HIV infection. Using MonoDNAmAge clock as well as four established clocks (i.e., HorvathDNAmAge, HannumDNAmAge, PhenoDNAmAge, GrimDNAmAge), we then evaluated the effect of alcohol consumption on biological aging in three independent cohorts (N=2,242).ResultsMonoDNAmAge, comprised of 186 CpG sites, was highly correlated with chronological age (rtraining=0.96, p<2.20E-16; rtesting=0.86, p=1.55E-141). The MonoDNAmAge clock predicted an approximately 10-year age acceleration from HIV infection in two cohorts. Quadratic regression analysis showed a nonlinear relationship between MonoDNAmAge and alcohol consumption in the Yale Stress Center Community Study (YSCCS, pmodel=4.55E-08, px2 =7.80E-08) and in the Veteran Aging Cohort Study (VACS, pmodel=1.85E-02, px2 =3.46E-02). MonoDNAmAge and light alcohol consumption showed a negative linear relationship in the Women’s Interagency HIV Study (WIHS, β=-2.63, px=2.82E-06). Heavy consumption increased EAAMonoDNAmAge up to 1.60 years in the VACS while light consumption decreased EAAMonoDNAmAge to 2.66 years in the WIHS. These results were corroborated by the four established epigenetic clocks.ConclusionsWe observed a nonlinear effect of alcohol consumption on epigenetic age that is estimated by a novel monocyte-based “clock” in three distinct cohorts, highlighting the complex effects of alcohol consumption on biological age.

Blood enterovirus polymerase chain reaction testing in young febrile infants

2021 ◽  
pp. archdischild-2020-321077
Author(s):  
Carla Pintos ◽  
Santiago Mintegi ◽  
Javier Benito ◽  
Maitane Aranzamendi ◽  
Leire Bonilla ◽  
...  
Keyword(s):  
Antibiotic Treatment ◽  
Clinical Decision Making ◽  
Bacterial Pathogen ◽  
Length Of Hospital Stay ◽  
Clinical Decision ◽  
Dipstick Test ◽  
Urine Dipstick ◽  
Young Infants ◽  
Urine Dipstick Test ◽  
The Impact

ObjectiveTo analyse the impact of blood enterovirus and human parechovirus PCR (ev-PCR) testing in young infants with fever without a source (FWS).DesignObservational study, subanalysis of a prospective registry.SettingPaediatric emergency department.PatientsInfants ≤90 days of age with FWS seen between September 2015 and August 2019 with blood ev-PCR, blood and urine cultures and urine dipstick test performed.Main outcome measuresPrevalence of invasive bacterial infection (IBI: bacterial pathogen in blood or cerebrospinal fluid) in infants with positive or negative ev-PCR test results. Secondarily, we also compared length of stay and antibiotic treatment in hospitalised infants.ResultsOf 703 infants, 174 (24.7%) had a positive blood ev-PCR and none of them were diagnosed with an IBI (vs 2.6% (95% CI 1.3% to 4.0%) of those with a negative result, p=0.02). Prevalence of non-IBI (mainly urinary tract infection) was also lower among infants with a positive blood ev-PCR (2.3% (95% CI 0.1% to 4.5%) vs 17.6% (95% CI 14.3% to 20.8%), p<0.01).Overall, 258 infants were hospitalised (36.6%) and 193 (74.8%) of them received antibiotics. Length of hospital stay and antibiotic treatment were shorter in those with a positive blood ev-PCR (median: 3 days vs 5 days and 1 day vs 5 days, respectively; p<0.01). Differences remained statistically significant among well-appearing infants >21 days old with normal urine dipstick.ConclusionBlood ev-PCR identifies a group of infants under 90 days of age with FWS at very low risk of IBI. This test may help to guide clinical decision making in young febrile infants.

scholarly journals QOLP-03. MEASURING CHANGE IN HEALTH-RELATED QUALITY OF LIFE: THE ADDED VALUE OF ANALYSIS ON THE INDIVIDUAL PATIENT LEVEL IN GLIOMA PATIENTS IN CLINICAL DECISION MAKING

2019 ◽  
Vol 21 (Supplement_6) ◽  
pp. vi197-vi198 ◽  
Author(s):  
Marijke Coomans ◽  
Martin Taphoorn ◽  
Neil Aaronson ◽  
Brigitta Baumert ◽  
Martin van den Bent ◽  
...  
Keyword(s):  
Decision Making ◽  
Clinical Decision Making ◽  
Clinical Decision ◽  
Scale Item ◽  
Individual Patient Level ◽  
Patient Level ◽  
Related Quality ◽  
The Individual ◽  
The Impact ◽  
Over Time

Abstract BACKGROUND: Health-related quality of life (HRQoL) is an important outcome in glioma research, reflecting the impact of disease and treatment on a patient’s functioning and wellbeing. Data on changes in HRQoL scores provide important information for clinical decision-making, but different analytical methods may lead to different interpretations of the impact of treatment on HRQoL. This study aimed to study whether different methods to evaluate change in HRQoL result in different interpretations. Methods: HRQoL and sociodemographical/clinical data from 15 randomized clinical trials were combined. Change in HRQoL scores was analyzed: (1)at the group level, comparing mean changes in scale/item scores between treatment arms over time, (2)at the patient level per scale/item by calculating the percentage of patients that deteriorated, improved or remained stable on a scale/item per scale/item, and (3)at the individual patient level combining all scales/items. Results: Data were available for 3727 patients. At the group scale/item level (method 1), only the item ‘hair loss’ showed a significant and clinically relevant change (i.e. ≥10 points) over time, whereas change scores on the other scales/items showed a statistically significant change only (all p< .001, range in change score:0.1–6.2). Analyses on the patient level per scale (method 2) indicated that, while a large proportion of patients had stable HRQoL over time (range:27–84%), many patients deteriorated (range:6–43%) or improved (range:8–32%) on a specific scale/item. At the individual patient level (method 3), the majority of patients (86%) showed both deterioration and improvement, while only 1% of the patients remained stable on all scales. Conclusion: Different analytical methods of changes in HRQoL result in distinct interpretations of treatment effects, all of which may be relevant for clinical decision-making. Additional information about the joint impact of treatment on all outcomes may help patients and physicians to make the best treatment decision.

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