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"Quality of Life" and "Health Outcomes" and other terms referring to the physical, mental and emotional effects experienced by people as they encounter health challenges are in wide use and misuse in the health care and health research community. Many of these terms are used interchangeably without recognizing that they have completely different meanings and, thus, require different measurement approaches and different types of interventions if they are to be optimized. The notion of creating a "dictionary" of these terms arose so that novices and experts, researchers and clinicians, can commonly address these health outcome challenges. The correct term for this collection of definitions is a "vocabulary for a vertical audience" as the definitions reflect the usage in QOL and health outcomes measurement rather than all usages and the definitions were written to have meaning for the novice while still being useful for the expert As a starting point for the vocabulary, terms were chosen based on the frequency of use in journal articles focussing on of quality of life research. The terms fall broadly into 8 concepts all of which have an identified need for consistent and correct terminology: research process, measurement properties, statistics for QOL research, designs for QOL research, patient reported outcomes (PROs), theories and models, knowledge translation, and personal factors. Rather than being "A malevolent literary device for cramping the growth of a language and making it hard and inelastic" (Ambrose Bierce, The Devil's Dictionary), "This dictionary, however, is a most useful work." (Ambrose Bierce, The Devil's Dictionary). To avoid the "devil," terms reflecting modern advances in outcomes research and design were included even they may not yet be in common usage in QOL research. For example, while designs like the stepped wedge or platform trials may not yet have penetrated the world of QOL research, they will not if no one knows about them. More than 20 people contributed definitions and following editing, the dictionary was opened up for review and comment from members of ISOQOL and their suggestions and modifications were included, adding a component of peer review to the process. Editor, Nancy E. Mayo, BSc(PT), MSc, PhD James McGill Professor Fellow of the Canadian Academy of Health Sciences Department of Medicine School of Physical and Occupational Therapy McGill University [email protected]
Patients often are asked to fill out questionnaires before or after going to the doctor's office or hospital. What is the point of these questionnaires? Why do the questions often seem irrelevant? Does it matter if patients fill them out or ignore them? This book addresses these questions while also providing historical context about how these questionnaires became so popular. These questionnaires, which philosopher Leah M. McClimans calls 'Patient-Centered Measures' have a fascinating history that combines the contemporary emphasis in medical ethics on patient-centered care with the contemporary preoccupation with evidence-based medicine (the idea that medical decisions should be based on empirical evidence). Patient-centered measures sit between these two concerns and thus serve as an excellent example of a medical technology for the twenty-first century.
Quality of life is an important outcome when treating a cancer patient. Research is vast on the role of quality of life on patients' general wellbeing, responsiveness to treatment, and even mortality. On the other hand, there are several methodological considerations when planning to measure and assess quality of life in cancer patients. This handbook – with authorship that is diverse in terms of perspectives, countries, and fields – aims to fill a gap in the available literature and responds to a number of questions in its 26 chapters: What is quality of life and health-related quality of life and why are they important? How is quality of life assessed? What are the theoretical and methodological considerations when using quality of life outcomes in cancer research? How is quality of life useful in routine clinical care? How is quality of life impacting different cancer populations in terms of site of the cancer, age, gender, and context? Handbook of Quality of Life in Cancer is a learning and consulting tool that can be used by a diverse audience. It is an essential resource for researchers who wish to use quality of life assessment tools in clinical trials or other types of studies; clinicians who want to develop their understanding of how they can utilize quality of life and how it is important for the patients they care for; and commissioners who wish to see why quality of life may impact population health and health system costs. Students in diverse fields of study (medicine, nursing, psychology, social work, medical sociology, population health, epidemiology, and medical statistics, among others) also would benefit from using the handbook for their studies and for their continuing professional development.
Assessing health-related quality of life (HRQOL) of Children has been a popular topic in recent years worldwide. However, there are several issues/gaps in this research area which need to be addressed. For instance, previous studies on HRQOL of Children populations have normally used HRQOL instruments designed for adults. These measurements may not be suitable for children as they are in a series of cognitive developmental stages and have different perspectives towards the relative importance of HRQOL dimensions. In order to tackle this issue and to accurately measure children’s HRQOL, a set of dedicated HRQOL instruments should be first developed and validated. The validated instruments could then be applied to the population measuring their HRQOL. In addition, the HRQOL information collected could be translated into health utility score if it is measured by utility instruments (e.g., EQ-5D-Y) for the population. Moreover, the relevant studies on these issues is still lacking especially in non-western countries.
This is a comprehensive major reference work for our SpringerReference program covering clinical trials. Although the core of the Work will focus on the design, analysis, and interpretation of scientific data from clinical trials, a broad spectrum of clinical trial application areas will be covered in detail. This is an important time to develop such a Work, as drug safety and efficacy emphasizes the Clinical Trials process. Because of an immense and growing international disease burden, pharmaceutical and biotechnology companies continue to develop new drugs. Clinical trials have also become extremely globalized in the past 15 years, with over 225,000 international trials ongoing at this point in time. Principles in Practice of Clinical Trials is truly an interdisciplinary that will be divided into the following areas: 1) Clinical Trials Basic Perspectives 2) Regulation and Oversight 3) Basic Trial Designs 4) Advanced Trial Designs 5) Analysis 6) Trial Publication 7) Topics Related Specific Populations and Legal Aspects of Clinical Trials The Work is designed to be comprised of 175 chapters and approximately 2500 pages. The Work will be oriented like many of our SpringerReference Handbooks, presenting detailed and comprehensive expository chapters on broad subjects. The Editors are major figures in the field of clinical trials, and both have written textbooks on the topic. There will also be a slate of 7-8 renowned associate editors that will edit individual sections of the Reference.
Evaluation of health care is necessary if we are to understand the organisation of health services and to determine how health care interventions should be delivered. The second edition of this fully revised public health text introduces the various types of health care evaluations, and explores the ways in which scientifically robust studies can be used to assess health care interventions, with a focus on measuring their impact on patient outcomes. Throughout this book, the concepts and methods of evaluating health care interventions are considered in terms of four key dimensions: effectiveness, efficiency, humanity and equity. In order to fully equip the public health practitioner or student, this book: • Considers a broad range of evaluation methods including cross-sectional studies, quasi-experimental designs and qualitative methods • Gives an updated account of current theory, research and practice in the field • Features activities to help readers apply its content to their own practice Health Care Evaluation, 2nd edition is an essential textbook that outlines evaluation methods in an accessible way for public health students, public health practitioners and policy makers. Understanding Public Health is an innovative series published by Open University Press in collaboration with the London School of Hygiene & Tropical Medicine, where it is used as a key learning resource for postgraduate programmes. It provides self-directed learning covering the major issues in public health affecting low, middle and high income countries. "In ageing societies and developing country populations at risk of long term conditions, the impact of new health care interventions on health and wellbeing require robust evaluation. Tsang, Cromwell and colleagues set out a comprehensive framework for a breadth of simple evaluations, carefully laid out with thoughtful vignettes for readers to address and informative reference material. A book for experienced and fledgling evaluators to access, maximising the chances of decisions around innovations being based on sound science." Professor Charles Wolfe, Professor of Public Health, Guy’s & St Thomas’ NHS Foundation Trust, UK "Evaluation is an essential tool to support health services respond to ever more complex demands from an ageing population. This volume is strongly recommended as it provides outstanding guidance combining authority with clarity and ease of use." Ray Fitzpatrick, Professor of Public Health and Primary Care, University of Oxford, UK
In this thoroughly revised second edition of the frequently downloaded manual, The SAGES Manual of Quality, Outcomes, and Patient Safety. A panel of experts update and expand their survey of the many factors that influence quality in the world of surgery, surgical outcomes, and threats to patient safety. Among the highlights include a section devoted to threats to quality and outcomes and safety, such as surgeon wellness and burnout, disruptive behavior, second victims, the surgeon with declining skills, and maintaining quality in the setting of a crisis. Another all-new section focuses on surgical controversies, such as whether or not to use robotic surgical technology and whether or not it influences surgical outcomes; whether or not routine cholangiography reduces the common bile duct injury rate; whether or not having a consistent operating room team influences surgical outcomes, and whether a conflict of interest truly influences surgical quality. Further, this manual updates chapters on surgical simulation, teamwork and team training, teleproctoring, mentoring, and error analysis. State-of-the-art and readily accessible, The SAGES Manual of Quality, Outcomes, and Patient Safety, Second Edition will offer physicians strategies to maintain surgical quality in a rapidly changing practice environment the tools they require to succeed.
This fully updated and revised new edition provides a comprehensive, state-of-the art review of this field, and will serve as a valuable resource for clinicians, surgeons and researchers with an interest in prostate cancer. The book reviews new data about molecular characteristics of the disease, profiles the new grading system for prostate cancer introduced in 2015, and provides new perspectives about imaging of prostate cancer, as well as the role of targeted biopsies. The text summarizes the role of biomarkers and MRI in patient selection and management and details the world wide results of active surveillance. Specific chapters address communication and ethical issues, QOL outcomes, economic aspects, and psycho-social aspects of surveillance. The role of focal therapy for low risk disease is summarized, and the data supporting preventive interventions during surveillance reviewed. This text will serve as a very useful resource for physicians and researchers dealing with, and interested in this common malignancy, as it provides a concise yet comprehensive summary of the current status of the field that will help guide patient management and stimulate investigative efforts.
This proceedings volume highlights the latest research and developments in psychometrics and statistics. It represents selected and peer reviewed presentations given at the 84th Annual International Meeting of the Psychometric Society (IMPS), organized by Pontificia Universidad Católica de Chile and held in Santiago, Chile during July 15th to 19th, 2019. The IMPS is one of the largest international meetings on quantitative measurement in education, psychology and the social sciences. It draws approximately 500 participants from around the world, featuring paper and poster presentations, symposiums, workshops, keynotes, and invited presentations. Leading experts and promising young researchers have written the included chapters. The chapters address a large variety of topics including but not limited to item response theory, multistage adaptive testing, and cognitive diagnostic models. This volume is the 8th in a series of recent volumes to cover research presented at the IMPS.
The second edition of Oncology Clinical Trials has been thoroughly revised and updated and now contains the latest designs and methods of conducting and analyzing cancer clinical trials in the era of precision medicine with biologic agents—including trials investigating the safety and efficacy of targeted therapies, immunotherapies, and combination therapies as well as novel radiation therapy modalities. Now divided into six sections this revamped book provides the necessary background and expert guidance from the principles governing oncology clinical trials to the innovative statistical design methods permeating the field; from conducting trials in a safe and effective manner, analyzing and interpreting the data, to a forward-looking assessment and discussion of regulatory issues impacting domestic, international, and global clinical trials. Considered by many as the gold standard reference on oncology clinical trials in the field, the second edition continues to provide examples of real-life flaws and real-world examples for how to successfully design, conduct and analyze quality clinical trials and interpret them. With chapters written by oncologists, researchers, biostatisticians, clinical research administrators, and industry and FDA representatives, this volume provides a comprehensive guide in the design, conduct, monitoring, analysis, and reporting of clinical trials in oncology. NEW TO THIS EDITION: Outlines how to design clinical trials with and without biomarker testing—including genomics-based “basket” trials, and adaptive trials for all phases during treatment and quality-of-life trials Includes new chapters on immunotherapy trials, radiation therapy trials, multi-arm trials, meta-analysis and adaptive design, use of genomics, dose modifications and use of ancillary treatments in investigational studies, establishing surrogate endpoints, practical issues with correlative studies, cost-effectiveness analysis, and more Comprehensively covers all regulatory aspects in the pursuit of global oncology trials Digital access to the ebook included