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Pamela S. Hinds - Pediatric Oncology Nursing: Defining Care Through Science

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Pamela S. Hinds Pediatric Oncology Nursing: Defining Care Through Science

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This book presents the current state of the nursing science in topics relevant to the care of pediatric oncology patients and their families across the treatment trajectory and is framed within a precision health framework. The spectrum of topics covered is wide, including, for example, symptom management, self-care management, exercise and physical activity, family-centered care, palliative care, the role of the nurse in treatment decision making, patient and nurse resiliency, survivorship, and genetic counseling. Throughout, there is a focus on the implications of research for nursing practice, highlighting which elements of the available evidence are ready for translation into practice and which are not. In addition, careful attention is paid to the role that nursing can play in further advancing science through clinical research. The authors are leading experts from across the globe. The book will be of special interest for pediatric oncology nurses, including direct care nurses, research nurses, and nursing leaders, and will also be a stimulating source for researchers and non-oncology nurses.

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Pediatric Oncology Series Editors Gregory H Reaman Silver Spring MD USA - photo 1
Pediatric Oncology
Series Editors
Gregory H. Reaman
Silver Spring, MD, USA
Franklin O. Smith
Cincinnati, OH, USA

More information about this series at http://www.springer.com/series/5421

Editors
Pamela S. Hinds and Lauri Linder
Pediatric Oncology Nursing
Defining Care Through Science
Editors Pamela S Hinds Department of Nursing Science Professional Practice - photo 2
Editors
Pamela S. Hinds
Department of Nursing Science, Professional Practice, and Quality, Childrens National Hospital, Washington, DC, USA
Lauri Linder
College of Nursing, University of Utah, Salt Lake City, UT, USA
ISSN 1613-5318 e-ISSN 2191-0812
Pediatric Oncology
ISBN 978-3-030-25803-0 e-ISBN 978-3-030-25804-7
https://doi.org/10.1007/978-3-030-25804-7
Springer Nature Switzerland AG 2020
This work is subject to copyright. All rights are reserved by the Publisher, whether the whole or part of the material is concerned, specifically the rights of translation, reprinting, reuse of illustrations, recitation, broadcasting, reproduction on microfilms or in any other physical way, and transmission or information storage and retrieval, electronic adaptation, computer software, or by similar or dissimilar methodology now known or hereafter developed.
The use of general descriptive names, registered names, trademarks, service marks, etc. in this publication does not imply, even in the absence of a specific statement, that such names are exempt from the relevant protective laws and regulations and therefore free for general use.
The publisher, the authors, and the editors are safe to assume that the advice and information in this book are believed to be true and accurate at the date of publication. Neither the publisher nor the authors or the editors give a warranty, expressed or implied, with respect to the material contained herein or for any errors or omissions that may have been made. The publisher remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

This Springer imprint is published by the registered company Springer Nature Switzerland AG

The registered company address is: Gewerbestrasse 11, 6330 Cham, Switzerland

The authors dedicate this book to the visionary scientists and clinicians whose legacies continue in the personalized care of children, adolescents, and young adults who are in treatment or in survivorship from childhood cancer and their families. We dedicate this book additionally to the children and families that have participated in research; by their participation, they have contributed to excellence in nursing care. Finally, we dedicate this book to the nurses and other health care professionals who contributed to the knowledge and ideas in this text and to those who will use this knowledge to make the cancer care and the future better for pediatric oncology patients, their families, and the nurses who care for them.

Foreword by Gregory H. Reaman and Franklin O. Smith
Pediatric Oncology Nursing: Defining Care Through Science

This exceptional text has adopted a bold and timely concept to provide a contextual framework for its entire contents. Precision medicine in oncology and specifically in pediatric oncology best defines the evolving scientific paradigm for basic discovery and translational and clinical investigation. The concept spans the evaluation of genomic perturbations implicated in the etiology of specific cancers, their potential role in treatment response and resistance, and new drug development. As well, the use of gene defects and their expression as well as other biologic variables of tumors and hosts are increasingly employed for prognostication, risk stratification, and biomarker-directed enrichment of patient subpopulations for clinical trial design and conduct.

It should come as no surprise to pediatric oncologists that pediatric oncology nurses can do the field one better by extending Precision Medicine to Precision Health. Here they address the impact of cancer on the whole child and his/her universe: physical status, emotion, physical functionality and mobility, cognitive capacity and developmental potential, quality of life, family, and community. It is also evident from the broad contents of this text that the concept of precision is taken seriously and is continuously informed by science. In addition to core nursing tenets for optimizing care for seriously ill children, advocating for and defining family-centered care, initiating timely consideration of palliation, distinct from end of life care, rigorous research in areas of self-management, resiliency, symptom monitoring and reporting, including self-reporting, treatment compliance, treatment decision-making, informed consent for participation in clinical research, and coping with survivorship have emerged as additional scientific focus areas for nursing research. The research strategies, study considerations, results, and potential for translation to further improvements in the care of children with cancer are poignant and offer rich insights into the probability that optimal care of the child with cancer will continue to be refined by scientific precision.

The pivotal and oftentimes unsung contributions of nursing excellence to every success in pediatric oncology to date cannot be overstated. The emerging paradigm for nursing research that is thoughtfully described in this text continues to offer real promise for children with cancer and their families.

Gregory H. Reaman
Franklin O. Smith
Washington, DC Cincinnati, OH
Foreword by Ann OMara and Diane St. Germain

We are deeply humbled by Drs. Hinds and Linders invitation to write the Foreword forPediatric Oncology Nursing: Defining Care Through Science.Their combined expertise in the nursing care of children and their families diagnosed with cancer guarantees a valuable text for practicing nurses and graduate students.

Incorporating the childs voice in all aspects of care and research has been the hallmark of Drs. Hinds and Linders work. With Dr. Hinds, we see this in her successful efforts to validate the adult version of the Patient-Reported Outcomes Version of the Common Terminology Criteria for Adverse Events (PRO-CTCAE) in the pediatric population. This will be a game changer in the cancer clinical trials setting. For decades, the world of oncology clinical trialists has overlooked the importance of asking patients who are enrolled on cancer clinical trials about their symptomatic toxicities. However, a new generation of clinical trialists in the adult setting addressed this gap and with National Cancer Institute (NCI) support developed and validated PRO-CTCAE. As of this writing, it is being incorporated into an increasing number of phase 1, 2, and 3 NCI supported clinical trials. With NIH support, Dr. Hinds and her team took on the challenge and successfully validated these items in the pediatric setting. Knowing Dr. Hinds resilience and persistence, we are very confident that we will see the same level of enthusiasm to use them in pediatric cancer clinical trials. Data from these trials will be so informative to pediatric oncology nurses and scientists as they design and implement more targeted supportive care interventions for their patients and families. Employing the same level of passion and persistence as Dr. Hinds, Dr. Linders work in gaining a more comprehensive understanding of the symptom experience in the adolescent and young adult (AYA) population adds incredible depth to the textbook. Recognizing the importance of a national collaboration, Dr. Linder is a member of the Consortium to Study Symptoms in Adolescents and Young Adults with Cancer (CS2AYAC), a consortium of nurse researchers in the United States with a shared interest in studying symptoms in adolescents and young adults with cancer. With funding from the St. Baldricks Foundation, Dr. Linder and her team developed and demonstrated feasibility of an iPad application, the Computerized Symptom Capture Tool (C-SCAT) in the AYA setting. She has now taken this a step further by demonstrating the preliminary efficacy of C-SCAT as a resource to support symptom self-management among AYAs receiving chemotherapy. A common theme of both of these leaders is symptoms, ranging from developing valid and reliable assessment measures to developing and testing supportive care interventions. With these impressive backgrounds, who is better poised to convene experts and guide them in writing a very needed and most excellent textbook?

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