Measuring Health-Related Quality of Life in Children and Adolescents


Book Description

This volume's purpose is to describe concepts and methods concerning assessment of health-related quality of life (HRQOL) in children and adolescents with a special focus on chronic health conditions. The impetus for this book came from a recognition of the increasing importance of HRQOL assessments in the evaluation of treatment outcomes and the need to increase the utilization of HRQOL assessments in research and clinical applications with a range of pediatric populations. The need to develop a volume that describes new research and clinical applications concerning this topic stemmed from several recent developments. There is a continuing need for evaluations of the efficacy of medical treatments for children and adolescents, including those with chronic health conditions. To address these critical unmet needs in the field of HRQOL assessment, and to advance scientific methods and clinical applications in this field, a conference was held at Case Western Reserve University. The conference set out to summarize current information concerning the development and implementation of measures of HRQOL assessment, to identify and consider key conceptual and methodological issues in research concerning the measurement of HRQOL, and to recommend priorities to advance the state-of-the-art in research and clinical applications of QOL assessment in children and adolescents with chronic health conditions. This volume summarizes and synthesizes the information that was presented by the conference participants in a series of lively discussions and chapters that were based on the presentations.




Oral Health-related Quality of Life


Book Description

ABSTRACT: Helping patients achieve an optimal quality of life through patient-centered treatment planning should be the ultimate goal of all oral health care providers. However, this issue extends beyond the realm of the individual clinician's office. This text presents quality-of-life research from various fields, including psychology, public health, and general health care; discusses how a patient-centered approach can be applied to basic oral and craniofacial research, clinical dental practice, community dental health issues, and dental education; and addresses how oral health-related quality of life relates to treating and understanding different patient populations, such as children with special needs, medically compromised patients, patients with oral cancer, and patients with chronic facial pain. Also discussed is how factors such as race/ethnicity, gender, and age can affect oral health-related quality-of-life concerns and treatment strategies. Finally, the book offers an outlook on the role that oral health-related quality of life will play in future research and dental education.




Assessing Health-related Quality of Life of Children


Book Description

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.




Quality of Life Assessment: Key Issues in the 1990s


Book Description

This book reviews current methodology for assessing the health status of patients -- their 'quality of life' -- and shows how this methodology can be applied to specific diseases such as cancer, rheumatoid arthritis, angina and Parkinson's disease.




When Children Die


Book Description

The death of a child is a special sorrow. No matter the circumstances, a child's death is a life-altering experience. Except for the child who dies suddenly and without forewarning, physicians, nurses, and other medical personnel usually play a central role in the lives of children who die and their families. At best, these professionals will exemplify "medicine with a heart." At worst, families' encounters with the health care system will leave them with enduring painful memories, anger, and regrets. When Children Die examines what we know about the needs of these children and their families, the extent to which such needs areâ€"and are notâ€"being met, and what can be done to provide more competent, compassionate, and consistent care. The book offers recommendations for involving child patients in treatment decisions, communicating with parents, strengthening the organization and delivery of services, developing support programs for bereaved families, improving public and private insurance, training health professionals, and more. It argues that taking these steps will improve the care of children who survive as well as those who do notâ€"and will likewise help all families who suffer with their seriously ill or injured child. Featuring illustrative case histories, the book discusses patterns of childhood death and explores the basic elements of physical, emotional, spiritual, and practical care for children and families experiencing a child's life-threatening illness or injury.




Children with Developmental Coordination Disorder


Book Description

The term Developmental Coordination Disorder (DCD) is used to describe a group of children who have difficulty. with tasks involving movement such that it interferes with their daily living or academic progress. As with other developmental disorders such as autistic spectrum disorder, attention deficit disorder and dyslexia, DCD is now a prominent concern of both researchers and practitioners. This text is aimed at both researchers and professionals who work in a practical manner with the condition and includes professionals in health, occupational therapists, physiotherapists, health visitors, paediatricians, and - in the educational field - teachers and others who are in daily contact with the children - their parents. The essence of the text is that work with children should be guided by research evidence driving the clinical practice which in turn raisies more questions for research. The authors in this text have both experience in research and are engaged in the day-to-day clinical work with children and bring both of these to bear in the chapters they have written.




Handbook of Psychiatry in Palliative Medicine


Book Description

Psychiatric, or psychosocial, palliative care has transformed palliative medicine. Palliation that neglects psychosocial dimensions of patient and family experience fails to meet contemporary standards of comprehensive palliative care. While a focus on somatic issues has sometimes overshadowed attention to psychological, existential, and spiritual end-of-life challenges, the past decade has seen an all encompassing, multi-disciplinary approach to care for the dying take hold. Written by internationally known psychiatry and palliative care experts, the Handbook of Psychiatry in Palliative Medicine is an essential reference for all providers of palliative care, including psychiatrists, psychologists, mental health counselors, oncologists, hospice workers, and social workers.




Quality of Life


Book Description

Quality of life studies form an essential part of the evaluation of any treatment. Written by two authors who are well respected within this field, Quality of Life: The Assessment, Analysis and Interpretation of Patient-reported Outcomes, Second Edition lays down guidelines on assessing, analysing and interpreting quality of life data. The new edition of this standard book has been completely revised, updated and expanded to reflect many methodological developments emerged since the publication of the first edition. Covers the design of instruments, the practical aspects of implementing assessment, the analyses of the data, and the interpretation of the results Presents all essential information on Quality of Life Research in one comprehensive volume Explains the use of qualitative and quantitative methods, including the application of basic statistical methods Includes copious practical examples Fills a need in a rapidly growing area of interest New edition accommodates significant methodological developments, and includes chapters on computer adaptive testing and item banking, choosing an instrument, systematic reviews and meta analysis This book is of interest for everyone involved in quality of life research, and it is applicable to medical and non-medical, statistical and non-statistical readers. It is of particular relevance for clinical and biomedical researchers within both the pharmaceutical industry and practitioners in the fields of cancer and other chronic diseases. Reviews of the First Edition – Winner of the first prize in the Basis of Medicine Category of the BMA Medical Book Competition 2001: “This book is highly recommended to clinicians who are actively involved in the planning, analysis and publication of QoL research.” CLINICAL ONCOLOGY “This book is highly recommended reading.” QUALITY OF LIFE RESEARCH




Oxford Textbook of Palliative Nursing


Book Description

The Oxford Textbook of Palliative Nursing remains the most comprehensive treatise on the art and science of palliative care nursing available. Dr. Betty Rolling Ferrell and Dr. Judith A. Paice have invited 162 nursing experts to contribute 76 chapters addressing the physical, psychological, social, and spiritual needs pertinent to the successful palliative care team. Organized within 7 Sections, this new edition covers the gamut of principles of care: from the time of initial diagnosis of a serious illness to the end of a patient's life and beyond. This fifth edition features several new chapters, including chapters on advance care planning, organ donation, self-care, global palliative care, and the ethos of palliative nursing. Each chapter is rich with tables and figures, case examples for improved learning, and a strong evidence-based practice to support the highest quality of care. The book offers a valuable and practical resource for students and clinicians across all settings of care. The content is relevant for specialty hospice agencies and palliative care programs, as well as generalist knowledge for schools of nursing, oncology, critical care, and pediatric. Developed with the intention of emphasizing the need to extend palliative care beyond the specialty to be integrated in all settings and by all clinicians caring for the seriously ill, this new edition will continue to serve as the cornerstone of palliative care education.




Pediatric Inflammatory Bowel Disease


Book Description

Pediatric Inflammatory Bowel Disease, Second Edition provides an essential reference with an emphasis on the unique pediatric issues of IBD. Chapters focus on complications of IBD specific to children and adolescents. Treatment recommendations are based on the latest clinical research available. The textbook also presents sections dedicated to the aspects of participation in clinical research unique to children and adolescents and the complicated yet vital process of successfully transitioning a patient from a pediatric to adult specialist. Controversies in pediatric IBD care such as the off-label use of medications are also covered. The format incorporates multiple tables, graphs, and figures to improve readability and make for an efficient reference for clinicians to use. Thoroughly revised and updated from the first edition, the volumes includes new therapies that are currently being used or tested for treatment of IBD, important areas regarding incidence and prevalence, immunization and response to vaccine administration as well as advancements in our understanding of growth and development with particular to the use of growth hormone therapy. Other new areas covered include important topics of complementary and alternative medicine use in IBD, immunization, and liver disease in IBD. Pediatric Inflammatory Bowel Disease, Second Edition is a valuable resource for pediatric gastroenterologists as well as adult gastroenterologists.