Future Patients (future + patient)

Distribution by Scientific Domains

Selected Abstracts

Research Ethics: Ethical Issues of Data Reporting and the Quest for Authenticity

Catherine A. Marco MD
Abstract. The search for truth and its unbiased reporting are ultimate goals of conducting scientific research. Ideally, the reporting of research data ought to be an objective task. In practice, however, it is fraught with numerous statistical and ethical pitfalls, seldom addressed in formal emergency medicine training. The lure of academic celebrity and related influences may persuade researchers to report results in ways that make data appear more interesting, or worthy of publication. Several examples of potentially misleading data reporting are illustrated, including using inappropriate statistical tests, neglecting negative results, omitting missing data points, failing to report actual numbers of eligible subjects, using inappropriate graph labels or terminology, data dredging, and others. Although potentially inaccurate or inflated methods of data reporting may not constitute overt scientific misconduct, the intentional misrepresentation of data is a form of fraud or deception. Publicly funded academic inquiry is a privilege and honor enjoyed by a trusted few. Regardless of outcome, every effort should be made to report data in the most scientifically accurate method. To this end, the Society for Academic Emergency Medicine Code of Conduct and American College of Emergency Physicians Code of Ethics provide important guidance toward the accurate, compassionate, competent, impartial, and honest conduct of scientific research. Accuracy and authenticity in data reporting are first and foremost a matter of individual integrity, and are crucial to the preservation of academic credibility, the protection of future patients, and the public's trust in the medical research enterprise. [source]

Optimal clinical trial design using value of information methods with imperfect implementation

Andrew R. Willan
Abstract Traditional sample size calculations for randomized clinical trials are based on the tests of hypotheses and depend on somewhat arbitrarily chosen factors, such as type I and II errors rates and the smallest clinically important difference. In response to this, many authors have proposed the use of methods based on the value of information as an alternative. Previous attempts have assumed perfect implementation, i.e. if current evidence favors the new intervention and no new information is sought or expected, all future patients will receive it. A framework is proposed to allow for this assumption to be relaxed. The profound effect that this can have on the optimal sample size and expected net gain is illustrated on two recent examples. In addition, a model for assessing the value of implementation strategies is proposed and illustrated. Copyright 2009 John Wiley & Sons, Ltd. [source]

Characteristics and survival of patients with non-Hodgkin's lymphoma with and without acquired immunodeficiency syndrome

Catherine Diamond
Abstract Our objective was to determine the characteristics and survival of patients with non-Hodgkin's lymphoma (NHL) with and without acquired immunodeficiency syndrome (AIDS). A cancer registry and AIDS registry linkage for San Diego County was performed in October 1998 as part of a national multicentre study. We performed Kaplan,Meier analysis to compare survival in NHL patients with and without AIDS, after matching for age, sex, and race/ethnicity. We performed logistic regression to determine which patient and tumour characteristics were significantly associated with 1-year survival. Of the 4361 cases of NHL, 324 (7%) had AIDS and 4037 (93%) were not known to have AIDS. Patients with AIDS were more likely to have extranodal, high-grade, and disseminated NHL diagnosed by non-histologic means and were less likely to have received chemotherapy. Patients with AIDS and NHL who survived at least 1 year had less advanced disease stage and received chemotherapy. The median survival in patients with AIDS was 4,months (95% confidence interval (CI): 4,5) and 95,months (95% CI: 58,157) in patients without AIDS (P<0.001). Although these patients with AIDS-related NHL were unlikely to survive, the highly active antiretroviral agents currently used may improve outcomes in future patients. Copyright 2002 John Wiley & Sons, Ltd. [source]

ICD: a qualitative study of patient experience the first year after implantation

Helen CM Kamphuis MSc
Background., The experiences of how patients live with an implantable cardioverter defibrillator are still poorly understood. Only a few qualitative studies have investigated this phenomenon. This paper was undertaken as part of a larger project to evaluate quality of life and psychological well-being in those survivors of cardiac arrest who have received an implantable cardioverter defibrillator. Aims and objectives., The aim of this qualitative study was to explore how implantable cardioverter defibrillator recipients perceive their lives during the first year after implantation of the device. Methods., A sample of 21 patients who received an implantable cardioverter defibrillator was interviewed during three consecutive periods: one, six and 12 months postdischarge from the hospital. The semi-structured interviews were based on insights gained from a literature review. The transcripts were subjected to content analysis. Results., Analysis of the data revealed seven major categories: physical deterioration, cognitive changes, perceived social support, dependency, contact with the doctor, confrontation with mortality and uncertainty surrounding having a shock. Anxiety, uncertainty, disappointment, frustration, unexpected barriers, acceptance of and dependency on the implantable cardioverter defibrillator played a major role in the lives of implantable cardioverter defibrillator recipients. Well-being improved throughout the year. During the first months after discharge from the hospital the focus was on regaining physical health. During the early postimplantation period both the implantable cardioverter defibrillator recipient and family members had adapted to the situation. Reflection on the impact and consequences of the cardiac arrest was reported more often in the late postimplantation period. Conclusions., Content analysis is a resourceful approach giving answers to questions that have hardly been addressed within the domain of cardiology. Implantable cardioverter defibrillator recipients face a complex first year, especially the first 6 months. Cognitive deterioration and confrontation with mortality are problems that need to be researched further. Relevance to clinical practice., Caregivers are able to explain to future patients what they can expect in the first year after implantation. Caregivers may become more receptive to physical, psychological and social limitations and to emotional and social problems that occur in implantable cardioverter defibrillator recipients, enabling them to act upon them. [source]