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ICON Health Publications Official Health Sourcebooks |
The Official Parent's Sourcebook
on
CHILDHOOD SUPRATENTORIAL PRIMITIVE NEUROECTODERMAL AND PINEAL TUMORS
(Ewing's Family of Tumors; Primitive Neuroectodermal Tumors (PNET))
Revised and Updated for the Internet Age
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Pages | : | 112 |
Price | : | $28.95(USD) |
ISBN | : | 0497009528 |
Published | : | 2005 |
Synopsis | |
A comprehensive manual for anyone interested in self-directed research on . Fully referenced with ample Internet listings and glossary. |
Related Conditions/Synonyms | |
Ewing's Family of Tumors; Primitive Neuroectodermal Tumors (PNET) |
Description |
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This book has been created for parents who have decided to make education and research an integral part of the treatment process. Although it also gives information useful to doctors, caregivers and other health professionals, it tells parents where and how to look for information covering virtually all topics related to childhood supratentorial primitive neuroectodermal and pineal tumors (also Ewing's Family of Tumors; Primitive Neuroectodermal Tumors (PNET)), from the essentials to the most advanced areas of research. The title of this book includes the word official. This reflects the fact that the sourcebook draws from public, academic, government, and peer-reviewed research. Selected readings from various agencies are reproduced to give you some of the latest official information available to date on childhood supratentorial primitive neuroectodermal and pineal tumors. Given parents' increasing sophistication in using the Internet, abundant references to reliable Internet-based resources are provided throughout this sourcebook. Where possible, guidance is provided on how to obtain free-of-charge, primary research results as well as more detailed information via the Internet. E-book and electronic versions of this sourcebook are fully interactive with each of the Internet sites mentioned (clicking on a hyperlink automatically opens your browser to the site indicated). Hard-copy users of this sourcebook can type cited Web addresses directly into their browsers to obtain access to the corresponding sites. In addition to extensive references accessible via the Internet, chapters include glossaries of technical or uncommon terms. |
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Table of Contents |
Introduction Overview Organization Scope Moving Forward PART I: THE ESSENTIALS Chapter 1. The Essentials on Childhood Supratentorial Primitive Neuroectodermal and Pineal Tumors: Guidelines Overview What Are Childhood Supratentorial Primitive Neuroectodermal Tumors? Stage Information Risk Categories Treatment Option Overview Treatment Options for Childhood Supratentorial Primitive Neuroectodermal and Pineal Tumors To Learn More About PDQ More Guideline Sources Chapter 2. Seeking Guidance Overview Finding Associations Cancer Support Groups The Cancer Information Service Finding Cancer Resources in Your Community Finding Doctors Who Specialize in Cancer Care Selecting Your Child’s Doctor Working with Your Child’s Doctor Getting a Second Opinion Finding a Cancer Treatment Facility Questions and Answers about Children’s Cancer Centers Additional Cancer Support Information Vocabulary Builder PART II: ADDITIONAL RESOURCES AND ADVANCED MATERIAL Chapter 3. Physician Guidelines and Databases Overview NIH Guidelines Treatment Information Summary on Childhood Supratentorial Primitive Neuroectodermal Tumors Cellular Classification Stage Information Treatment Option Overview Untreated Childhood SPNET and Pineal Tumors Recurrent Childhood SPNET and Pineal Tumors For More Information NIH Databases Other Commercial Databases PART III. APPENDICES Appendix A. Finding Medical Libraries Overview Preparation Finding a Local Medical Library Medical Libraries in the U.S. and Canada Appendix B. Your Child’s Rights and Insurance Overview Your Child’s Rights as a Patient Parent Responsibilities Choosing an Insurance Plan Medicaid Financial Assistance for Cancer Care NORD’s Medication Assistance Programs Additional Resources Appendix C. Talking with Your Child about Cancer Overview Why Should I Tell My Child? Parent’s Questions What Should My Child Be Told? Questions Children May Ask Talking to Your Child with Late-Stage Cancer ONLINE GLOSSARIES Online Dictionary Directories CHILDHOOD SUPRATENTORIAL PRIMITIVE NEUROECTODERMAL AND PINEAL TUMORS GLOSSARY General Dictionaries and Glossaries INDEX |
Excerpt (Introduction) |
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Overview Dr. C. Everett Koop, former U.S. Surgeon General, once said, “The best prescription is knowledge.” The Agency for Healthcare Research and Quality (AHRQ) of the National Institutes of Health (NIH) echoes this view and recommends that all parents incorporate education into the treatment process. According to the AHRQ:
As the AHRQ mentions, finding the right information is not an obvious task. Though many physicians and public officials had thought that the emergence of the Internet would do much to assist parents in obtaining reliable information, in March 2001 the National Institutes of Health issued the following warning:
Since the late 1990s, physicians have seen a general increase in parent Internet usage rates. Parents frequently enter their children’s doctor’s offices with printed Web pages of home remedies in the guise of latest medical research. This scenario is so common that doctors often spend more time dispelling misleading information than guiding children through sound therapies. The Official Parent’s Sourcebook on Childhood Supratentorial Primitive Neuroectodermal and Pineal Tumors has been created for parents who have decided to make education and research an integral part of the treatment process. The pages that follow will tell you where and how to look for information covering virtually all topics related to childhood supratentorial primitive neuroectodermal and pineal tumors, from the essentials to the most advanced areas of research. The title of this book includes the word “official.” This reflects the fact that the sourcebook draws from public, academic, government, and peer-reviewed research. Selected readings from various agencies are reproduced to give you some of the latest official information available to date on childhood supratentorial primitive neuroectodermal and pineal tumors. Given parents’ increasing sophistication in using the Internet, abundant references to reliable Internet-based resources are provided throughout this sourcebook. Where possible, guidance is provided on how to obtain free-of-charge, primary research results as well as more detailed information via the Internet. E-book and electronic versions of this sourcebook are fully interactive with each of the Internet sites mentioned (clicking on a hyperlink automatically opens your browser to the site indicated). Hard copy users of this sourcebook can type cited Web addresses directly into their browsers to obtain access to the corresponding sites. Since we are working with ICON Health Publications, hard copy Sourcebooks are frequently updated and printed on demand to ensure that the information provided is current. In addition to extensive references accessible via the Internet, every chapter presents a “Vocabulary Builder.” Many health guides offer glossaries of technical or uncommon terms in an appendix. In editing this sourcebook, we have decided to place a smaller glossary within each chapter that covers terms used in that chapter. Given the technical nature of some chapters, you may need to revisit many sections. Building one’s vocabulary of medical terms in such a gradual manner has been shown to improve the learning process. We must emphasize that no sourcebook on childhood supratentorial primitive neuroectodermal and pineal tumors should affirm that a specific diagnostic procedure or treatment discussed in a research study, patent, or doctoral dissertation is “correct” or your child’s best option. This sourcebook is no exception. Each child is unique. Deciding on appropriate options is always up to parents in consultation with their children’s physicians and healthcare providers. Organization This sourcebook is organized into three parts. Part I explores basic techniques to researching childhood supratentorial primitive neuroectodermal and pineal tumors (e.g. finding guidelines on diagnosis, treatments, and prognosis), followed by a number of topics, including information on how to get in touch with organizations, associations, or other parent networks dedicated to childhood supratentorial primitive neuroectodermal and pineal tumors. It also gives you sources of information that can help you find a doctor in your local area specializing in treating childhood supratentorial primitive neuroectodermal and pineal tumors. Collectively, the material presented in Part I is a complete primer on basic research topics for childhood supratentorial primitive neuroectodermal and pineal tumors. Part II moves on to advanced research dedicated to childhood supratentorial primitive neuroectodermal and pineal tumors. Part II is intended for those willing to invest many hours of hard work and study. It is here that we direct you to the latest scientific and applied research on childhood supratentorial primitive neuroectodermal and pineal tumors. When possible, contact names, links via the Internet, and summaries are provided. It is in Part II where the vocabulary process becomes important as authors publishing advanced research frequently use highly specialized language. In general, every attempt is made to recommend “free-to-use” options. Part III provides appendices of useful background reading covering childhood supratentorial primitive neuroectodermal and pineal tumors or related disorders. The appendices are dedicated to more pragmatic issues facing parents. Accessing materials via medical libraries may be the only option for some parents, so a guide is provided for finding local medical libraries which are open to the public. Part III, therefore, focuses on advice that goes beyond the biological and scientific issues facing children with childhood supratentorial primitive neuroectodermal and pineal tumors and their families. Scope While this sourcebook covers childhood supratentorial primitive neuroectodermal and pineal tumors, doctors, research publications, and specialists may refer to your child’s condition using a variety of terms. Therefore, you should understand that childhood supratentorial primitive neuroectodermal and pineal tumors is often considered a synonym or a condition closely related to the following:
For the purposes of this sourcebook, we have attempted to be as inclusive as possible, looking for official information for all of the synonyms relevant to childhood supratentorial primitive neuroectodermal and pineal tumors. You may find it useful to refer to synonyms when accessing databases or interacting with healthcare professionals and medical librarians. Moving Forward Since the 1980s, the world has seen a proliferation of healthcare guides covering most illnesses. Some are written by parents, patients, or their family members. These generally take a layperson’s approach to understanding and coping with an illness or disorder. They can be uplifting, encouraging, and highly supportive. Other guides are authored by physicians or other healthcare providers who have a more clinical outlook. Each of these two styles of guide has its purpose and can be quite useful. As editors, we have chosen a third route. We have chosen to expose you to as many sources of official and peer-reviewed information as practical, for the purpose of educating you about basic and advanced knowledge as recognized by medical science today. You can think of this sourcebook as your personal Internet age reference librarian. Why “Internet age”? When their child has been diagnosed with childhood supratentorial primitive neuroectodermal and pineal tumors, parents will often log on to the Internet, type words into a search engine, and receive several Web site listings which are mostly irrelevant or redundant. Parents are left to wonder where the relevant information is, and how to obtain it. Since only the smallest fraction of information dealing with childhood supratentorial primitive neuroectodermal and pineal tumors is even indexed in search engines, a non-systematic approach often leads to frustration and disappointment. With this sourcebook, we hope to direct you to the information you need that you would not likely find using popular Web directories. Beyond Web listings, in many cases we will reproduce brief summaries or abstracts of available reference materials. These abstracts often contain distilled information on topics of discussion. While we focus on the more scientific aspects of childhood supratentorial primitive neuroectodermal and pineal tumors, there is, of course, the emotional side to consider. Later in the sourcebook, we provide a chapter dedicated to helping you find parent groups and associations that can provide additional support beyond research produced by medical science. We hope that the choices we have made give you and your child the most options in moving forward. In this way, we wish you the best in your efforts to incorporate this educational approach into your child’s treatment plan. |
Words Defined in the Vocabulary Builders |
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