Pediatric Psycho-oncology E-Book

• Herausgeber: John Wiley & Sons
• Kategorie: Fachliteratur
• Sprache: Englisch

Seitenzahl: 1012

Veröffentlichungsjahr: 2012

Beschreibung

Like the ground-breaking first edition, Pediatric Psycho-oncology, Second edition puts the child at the centre of medical and psychological care.  It broadens the focus beyond treatment and cure to consider the quality of life of the child and their family.  Written by an international group of pediatric oncologists and psychologists/psycho-oncologists brought together by an expert editorial team, it focuses on the real-life practical aspects of children undergoing treatment for cancer.

This edition has been restructured and opens with a major section on Active treatment, which includes chapters addressing quality of life, pain, psychosocial aspects of treatment and interventions, art therapy and different fantasy-based techniques, palliative care, communication and education, as well as a new chapter on psychopharmacology. Shorter sections then discuss survivorship and care of the dying child, including a new chapter on bereavement.  The final section comprises new chapters on ethical considerations and on addressing the emotional needs of children whose parents have cancer, as well as a case study on international collaboration.  An appendix provides a comprehensive overview of tools for evaluation and assessment in pediatric psychooncology.

This book is a highly practical resource that will be invaluable for all health care professionals looking after children and adolescents with cancer. 

Leseprobe

Contents

Cover

Title Page

Copyright

Dedication

List of Contributors

Foreword

Introduction: Embedding Psychosocial Care in Medicine: Pediatric Psycho-oncology as a Model

Preface

Part A: Active Treatment

Chapter 1: Cancer in Children: an Overview

Introduction

Chapter 2: Comprehensive and Family-Centered Psychosocial Care in Pediatric Oncology: Integration of Clinical Practice and Research

Introduction

Psychosocial Care

Integrating Clinical Care and Research

Examples of Integrated Clinical Care and Research

Types of Research Designs

Further Integration of Psychosocial Research

Caveats

Conclusion

Chapter 3: Quality of Life in Children with Cancer

Introduction

Definition of QOL

Assessing QOL: General Issues

Assessment Tools of Pediatric QOL

Representative Findings on the QOL of Children with Cancer

Some Non-medical Factors Affecting Pediatric QOL

Some Conclusions

Chapter 4: Pain in Pediatric Oncology

Introduction

Pain

History

Examination

Investigations

Pain Management

The WHO Pain Ladder

Patient- (or Nurse-)Controlled Analgesia

Practical Application

Non-Opioid and Adjuvant Therapy

Psychological Components to Pain

Neurolytic Procedures

Conclusion

Chapter 5: Psychiatric Impact of Childhood Cancer

Introduction

Diagnosis and TreatmentMain_Text

Long-Term Issues for Survivors

Families of Pediatric Patients and Survivors

Therapeutic Interventions

Conclusion

Chapter 6: Psychosocial Effects of Hematopoietic Cell Transplantation in Children

Introduction: Outlines of the Procedure

Isolation and Other Stressors

Effects on Quality of Life (QOL)

Quality of Life of BMT Survivors

Psychosocial Factors of Children's Adjustment

Psychosocial Effects on Disease Course and Outcome

Some Conclusions

Acknowledgements

Chapter 7: Psychosocial Aspects of Radiotherapy in Pediatric Cancer Patients

Introduction

Short-term and Immediate Psychological Effects of RT

Long-Term and or Delayed Psychological Effects of RT

Chapter 8: Communicating with Children: their Understanding, Information Needs, and Processes

Introduction

Literature Review

Practical Strategies in Speaking with Children

General Guidelines

Specific situations

Contextual Issues

Speaking with Children about Death

David's Story

When Parents Are Reluctant to Have a Child Told about the Diagnosis or Prognosis

When Adolescents Choose Not to Talk about Dying

Importance of Cultural and Spiritual Issues

Talking about Funerals

Conclusion

Acknowledgments

Chapter 9: Psychosocial Interventions: a Cognitive Behavioral Approach

Introduction

Cognition and Emotions

Appraisal by Children with Cancer and their Parents

Coping

Control Strategies

Application of Behavioral TherapeuticTechniques

The Psychosocial Intervention Model

Case Studies

Conclusion

Chapter 10: Education in Pediatric Oncology: Learning and Reintegration into School

Introduction: The Rationale for Preventive Intervention in the School

Survey of School Intervention Programs for Children with Cancer

Preventive Intervention in the School for Children with Cancer: The Perceived Personal Control (PPC) Crisis Model

Evaluation of Preventive Intervention in the School for Children with Cancer

Conclusion

Acknowledgments

Chapter 11: Psychopharmacology in Pediatric Oncology

Introduction

Medications with Adverse Psychiatric Effects

Decision to Use Psychoactive Medications

Commonly Used Psychoactive Medications in Pediatric Oncology by Indication

Interactions and Adverse Effects of Psychiatric Medications

Chapter 12: Complementary and Alternative Medicine Use in Children with Cancer

Introduction

What Is CAM?

Pediatric CAM Use

CAM Use for Pediatric Cancer

CAM for Pediatric Cancer: The Evidence

Clinical Application: Hypnotherapy as an Example

Conclusion

Acknowledgments

Chapter 13: Fantasy, Art Therapies, and Other Expressive and Creative Psychosocial Interventions

Introduction

Fantasy Involvement

Guided Imagery Combined with Computerized Art Therapy

Visual Arts

Bibliotherapy

Writing

Play

Drama Therapy and Psychodrama

Cinema and Video Therapy

Clowning

Humor Therapy

Music Therapy

Dance and Movement Therapy

Animal-Assisted and Pet-Facilitated Therapies

Parties and Outdoor Entertainment

Conclusion

Acknowledgments

Chapter 14: Palliative Care for Children with Advanced Cancer

Introduction

Definition of Palliative Care

Extent of Need for Pediatric Palliative Care for Children with Cancer

Barriers to the Provision of Pediatric Palliative Care

Financial Barriers to PPC

Communication and Decision-Making

Resuscitation Status

Cancer-Directed Therapy

Pain and Symptom Management

Meaningfulness and Quality of Life at the End of Life

Conclusion

Acknowledgments

Part B: Survivorship

Chapter 15: Neuropsychological Sequelae of Childhood Cancer

Introduction

Treatment Regimens for ALL and CNS Tumors and Their Effect on the Central Nervous System

Neurocognitive Sequelae in Survivors of Childhood Acute Lymphoblastic Leukemia

Neurocognitive Sequelae in Survivors of Childhood CNS Tumors

Standards of Clinical Care for Survivors of Childhood ALL and CNS Tumors

Intervention Efforts

Future Directions

Chapter 16: Survivorship in Childhood Cancer

Introduction

Following Completion of Treatment

Physical Sequelae of Successful Therapy

Psychological Adjustment of Child and Adolescent Cancer Survivors and Impact on Social Skills

Survivors of Brain Tumors during Childhood

Post-Traumatic Stress Disorder

Current Strategies to Minimize Long-Term Medical and Cognitive Problems

Strategies to Cope with Long-Term Sequelae

Conclusion

Part C: Death and Bereavement

Chapter 17: Care of a Child Dying of Cancer

Introduction

Burden of Physical and Psychosocial Distress at the End of Life

DNR and DNAR Orders

Palliative Sedation in Pediatric Cancer Patients

Role of Nutrition and Hydration During the Terminal Phase

Place of Death

Conclusion

Chapter 18: Psychological Intervention with the Dying Child

Introduction: Psychological Intervention as a Component of Palliative Care

Death Awareness in Children

Pediatric Psychological Palliative Care (PPPC)

Concerns of the Dying Child and How to Deal with Them Psychologically

Being Told the Truth

Protecting One's Parents

Guilt in Regard to One's Parents

Loss of Respect for Authorities

Loss of Control

Sadness and Sorrow

Anger

Wish Fulfillments

Hope and Self-comforting

Search for Meaning

General Issues in Providing PPPC

Chapter 19: Providing Support for Families Experiencing the Death of a Child

Introduction

Anticipatory Grieving

Death Notification

The Needs of Siblings and Other Children

Funeral Attendance

Death and Secondary Losses

Complicated Mourning

The Importance of Self-care

Part D: Additional Considerations

Chapter 20: Ethical Considerations in Pediatric Oncology: a Case-Based Psychosocial Overview

Introduction: Social and Intellectual Foundations

Informed Consent, Shared Decision-Making, and Parental Authority

Informedness, Honesty

Case #1: Shared Decision Making and Allison's Heart

Surrogates, Best Interests, and Shared Decision-Making

Best Interests and Relationships in Stem Cell Donation

Case #2: The Limits of Parental Authority

Case #3: Stress, Research, and Consent

Complications in the Relationship between Research and Practice

Case #4: Children as Decision-Makers

Case #6: Grief, Futility, and the Process of Bioethics Mediation

Conclusion

Chapter 21: When a Parent has Cancer: Supporting Healthy Child Development During Challenging Times

Parenting At a Challenging Time (PACT)

PACT and Pediatric Oncology?

Background

History and Structure of the PACT Program

Two Birds with One Stone: Creating a New PACT Program at Your Institution

PACT: Guiding Principles

PACT: The Practical Approach

PACT: Common Challenges

High Conflict Families

Signs of Depression

Conclusion

Chapter 22: Collaborations in Psychosocial Care in Pediatric Oncology: the Middle East as a Case Example

Introduction

Pediatric Cancer in Developed Countries

Pediatric Cancer in Developing Countries

The Reality of Childhood Poverty in Developing Countries: An Impediment to Psycho-Oncological Care

Psychosocial Morbidity and Care for Pediatric Cancer Patients and Their Families

Pediatric Cancer Pain: A Significant Psychosocial Stressor in Both Developed and Developing Countries

The Middle East as a Case Example

International Collaborations and Partnerships: The Middle East Cancer Consortium (MECC)

The Middle East Cancer Consortium (MECC) and Palliative Care

Integrative Pediatric Oncology in the Middle East and the Role of MECC

Conclusion

Part E: Appendix

Appendix A: Assessment Tools in Pediatric Psycho-oncology

Appendix B: Additional Resources

Books

Websites for Professionals and Families

Index

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Library of Congress Cataloging-in-Publication Data

Pediatric psycho-oncology : psychosocial aspects and clinical interventions / editors, Shulamith Kreitler, Andres Martin, Myriam Weyl Ben Arush. – 2nd ed.

p. cm.

Includes bibliographical references and index.

ISBN 978-1-119-99883-9 (cloth)

1. Tumors in children–Psychological aspects. 2. Tumors in children–Social aspects. I. Kreitler, Shulamith. II. Martin, Andrés. III. Weyl Ben Arush, Myriam.

RC281.C4P445 2012

618.92'994–dc23

2012010170

A catalogue record for this book is available from the British Library.

Wiley also publishes its books in a variety of electronic formats. Some content that appears in print may not be available in electronic books.

Cover Image: © Sean Gladwell—fotolia.com

The book is dedicated to all the children and familieswe had the honor to take care of in the pastand who will benefit from it in the future.

List of Contributors

Annah N. Abrams, MD Child Psychiatrist, Department of Pediatric Hematology Oncology, Massachusetts General Hospital; Chief, Child Psychiatry Consultation Liaison Service, Massachusetts General Hospital; Assistant Professor of Psychiatry, Harvard Medical School, Boston, MA, USA

Melissa A. Alderfer, PhD Assistant Professor of Pediatrics, The Children's Hospital of Philadelphia and Perelman School of Medicine, The University of Pennsylvania, Philadelphia, PA, USA

Myriam Weyl Ben-Arush, MD Head, Department of Pediatric Hematology Oncology, Meyer Children's Hospital; Deputy Director, Meyer Children's Hospital, Rambam Health Care Campus, Technion Israel- Institute of Technology, the Bruce Rappaport Faculty of Medicine, Haifa, Israel

Matthew G. Biel, MD, MSc Chief, Section of Child and Adolescent Psychiatry; Assistant Professor, Departments of Psychiatry and Pediatrics, Georgetown University Hospital, Washington, DC, USA

Ryan W. Blum, AB Yale School of Medicine, Yale Child Study Center, Yale Pediatric Ethics Program, CT, USA

Laura Cousins, BA Pain and Palliative Care Program, Department of Pediatrics, David Geffen School of Medicine at University of California at Los Angeles, CA, USA

Ronit Elhasid, MD Head, Pediatric Hematology Oncology Department, Tel Aviv Sourasky Medical Center, Sackler Faculty of Medicine, Tel-Aviv University, Israel

Subhadra Evans, PhD Pain and Palliative Care Program, Department of Pediatrics, David Geffen School of Medicine at University of California at Los Angeles, CA, USA

Stefan J. Friedrichsdorf, MD Medical Director, Department of Pain Medicine, Palliative Care & Integrative Medicine. Children's Hospitals and Clinics of Minnesota. Minneapolis, MN, USA

Martha A. Grootenhuis, PhD, Professor of Pediatric Psychology, Emma Kinderziekenhuis, Academic Medical Centre, University of Amsterdam, Netherlands

Richard D. W. Hain, MBBS MSc MD MRCP(UK) FRCPCH Dip Pall Med FHEA PGCE Consultant and Lead Clinician, Wales Pediatric Palliative Medicine Managed Clinical Network, Children's Hospital for Wales, Cardiff, UK, Visiting Professor, University of Glamorgan, Wales, Honorary Senior Lecturer, Bangor University, Wales

Matthew C. Hocking, PhD Psychology Fellow, Division of Oncology, The Children's Hospital of Philadelphia, Philadelphia, PA, USA

Jimmie Holland, MD Wayne E. Chapman Chair in Psychiatric Oncology, Memorial Sloan-Kettering Cancer Center, New York, NY, USA

Shai Izraeli, MD Head, Functional Genomics and Childhood Cancer Research Section, Department of Pediatric Hemato-Oncology and the Cancer Research Center, Edmond and Lily Safra Children Hospital, Sheba Medical Center, Tel-Hashomer. Associate Professor, Sackler Faculty of Medicine, Tel-Aviv University, Israel

Meriel E.M. Jenney, MB ChB, MD, MRCP, FRCPCH Consultant Pediatric Oncologist, Children's Hospital for Wales, Cardiff, UK

Michal M. Kreitler, MA, School of Psychology, Tel-Aviv University, Israel; Psychooncology Research Center, and Pediatric Institute of Hemato-Oncology, Sheba Medical Center, Tel-Hashomer, Israel

Shulamith Kreitler, PhD, Professor, School of Psychological Sciences, Tel-Aviv University; Faculty of Social Welfare and Health Sciences, University of Haifa; Head, Psychooncology Research Center, Sheba Medical Center, Tel Hashomer, Israel

Elena Krivoy, MSc Senior Clinical and Medical Psychologist. Department of Pediatric Hematology Oncology, Meyer Children's Hospital, Rambam Health Care Campus, Technion Israel- Institute of Technology, The Bruce Rappaport Faculty of Medicine, Haifa, Israel

Gary Kupfer, MD Professor of Pediatrics and Pathology, Chief, Section of Pediatric Hematology-Oncology, Yale School of Medicine, New Haven, CT, USA

Bob F. Last, PhD Emeritus Professor of Pediatric Psychology, VU University, Amsterdam and Emma Kinderziekenhuis, Academic Medical Centre, Amsterdam, Netherlands

Amita Mahajan, MD Department of Pediatric Oncology, Children's Hospital for Wales, Heath Park, Cardiff, UK

Andrés S. Martin, MPH Riva Ariella Ritvo Professor of Pediatric Oncology Psychosocial Services, Child Study Center, Yale University School of Medicine; and Smilow Cancer Hospital at Yale-New Haven, New Haven, CT, USA

Maria E. McGee, MD, MS, MPH Child and Adolescent Psychiatry Fellow, Georgetown University Hospital, Washington, DC, USA

Daniel Oppenheim, MD, PhD Psychoanalyst, Paris, France. Former senior psychiatrist, Gustave Roussy Cancer Institute, Villejuif, France

Maryland Pao, MD Clinical Director, National Institute of Mental Health, National Institutes of Health, Department of Health and Human Services, Bethesda, MD, USA

Monique Peretz Nahum, MD, Director Long Term Follow Up Outpatient Clinic, Department of Pediatric Hematology Oncology, Meyer Children's Hospital, Rambam Health Care Campus, Haifa, Israel

Elizabeth G. Pinsky, MD Child and Adolescent Psychiatry Resident, Massachusetts General/McLean Hospital, MA, USA

Sergey Postovsky, MD Deputy Director, Department of Pediatric Oncology/Hematology, Meyer Children's Hospital, Rambam Health Care Campus. Assistant Professor in Pediatrics, Faculty of Medicine, Technion – Israel Institute of Technology, Haifa, Israel

Paula Rauch, MD Department of Psychiatry, Massachusetts General Hospital, Harvard Medical School, Boston, MA, USA

Gideon Rechavi, MD, PhD Director, Cancer Research Center, Sheba Medical Center, Tel-Hashomer. The Gregorio and Dora Shapiro professor for Hematology Malignancies, Sackler School of Medicine, Tel-Aviv University, Israel

Rivka Rosenkranz, MEd BA Educational Counselor, Department of Pediatric Hematology Oncology, Meyer Children's Hospital, Rambam Health Care Campus, Haifa, Israel

David J. Schonfeld, MD, FAAP Director of National Center for School Crisis and Bereavement and Director of the Division of Developmental and Behavioral Pediatrics, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, USA

Elsa Segev-Shoham, MA Pediatric Oncology Unit, Haemek Medical Center, Afula, Israel; Former member of the board of the Israeli Society for Psycho-Oncology; Inspector of Special Education for the Israeli Ministry of Education, Israel

Aziza T. Shad, MD Chief, Division of Pediatric Hematology/Oncology, Blood, and Marrow Transplantation, Amey Distinguished Professor of Neuro-Oncology and Childhood Cancer, Lombardi Comprehensive Cancer Center and Georgetown University Hospital, Washington, DC, USA

Dafna Munitz-Shenkar, R.N, M.A Research Coordinator Nurse, Pediatric Hemato-Oncology, Edmond and Lily Safra Children's Hospital, Sheba Medical Center, Tel Hashomer, Israel

Michael Silbermann, MD, PhD Executive Director, Middle East Cancer Consortium, Halifa, Israel

Jane E. Skeen, BSc, MBChB Pediatric Oncologist, Starship Blood and Cancer Centre, Starship Children's Hospital, Auckland, New Zealand

Margaret L. Stuber, MD Vice Chair for Education in Psychiatry, Daniel X. Freedman Professor, Psychiatry and Biobehavioral Sciences, David Geffen School of Medicine at UCLA, CA, USA

Susan D. Swick, MD, MPH Director, Parenting At a Challenging Time (PACT, Program at the Vernon Cancer Center, Newton Wellesley Hospital; Medical Director, Mental Health Services, Vernon Cancer Center at Newton Wellesley Hospital; Attending Psychiatrist, Massachusetts General Hospital, Division of Child Psychiatry; Instructor in Psychiatry Harvard Medical School; MA, USA

Ciporah S. Tadmor, PhD Hospital-Based Medical Psychologist, Department of Pediatric Hematology Oncology Specialist in Medical Psychology, Consultant in Primary Prevention, Meyer Children's Hospital, Rambam Health Care Campus, Haifa, Israel

Amos Toren, MD, PhD Head Pediatric Hemato-ocology Edmond and Lily Safra Children's Hospital, The Sheba Medical Center-Tel Hashomer affiliated to The Sackler School of Medicine, Tel-Aviv University, Tel-Aviv, Israel

M. Louise Webster, MBChB, FRACP, FRANZCP Child and Adolescent Psychiatrist, Department Psychological Medicine, University of Auckland, Pediatric Consultation Liaison Psychiatry Team, Starship Children's Hospital, Auckland, New Zealand

Lori Wiener, PhD Co-Director, Behavioral Science Core; Head, Psychosocial Support and Research, NCI, POB, Bethesda, MD, USA

Lonnie Zeltzer, MD Pain and Palliative Care Program, Department of Pediatrics, David Geffen School of Medicine at University of California at Los Angeles, CA, USA

Foreword

It is an honor and pleasure to write the Foreword for the second edition of this important textbook of pediatric psycho-oncology. By identifying the international leaders in the field, the editors present a remarkable view of the state of the art in pediatric psycho-oncology, as we know it today, of the management of symptoms and psychosocial care. I commend them for it and also I commend this book to the reader.

Since the first edition was published, several important studies have been carried out and the importance of the care of the total child, not just the tumor, has become more widely recognized. An acknowledgement of this is the fact that in 2010 the International Pediatric Oncology Society (SIOP) endorsed the statement of the International Psycho-Oncology Society and the International Union Against Cancer (UICC) that a new standard of quality cancer care has been established: quality cancer care today must integrate the psychosocial domain into routine cancer care. The SIOP Board, at its meeting in Boston, MA, in September, 2010, endorsed this statement as it applies to the care of children with cancer. These are landmark statements which will encourage the field to move forward more rapidly with this policy support from the major oncology international societies.

I dedicated the first edition to my grandson, Gabriel, who had just died of hepatoblastoma, aged 3. I continue to honor his memory, like other professionals in the field, who have shared a similar loss, to carry the work forward as a memorial to him and to the children whom many pediatric oncologists remember with equal love, sadness and yet joy for their short lives and the pleasure they brought us. The struggle goes on to reduce the numbers of children who do not survive, and also to continue making our own contribution to improve the quality of life of those children during their illness to be the best possible. This dedication of purpose is the least that we can do to remember those whom we have loved and lost. I am grateful to be a part of this important effort to make the most up-to-date research results available to pediatric oncology teams around the world.

Jimmie Holland, MDWayne E. Chapman Chair in Psychiatric OncologyMemorial Sloan-Kettering Cancer CenterNew York, NYNovember 2011

Introduction: Embedding Psychosocial Care in Medicine: Pediatric Psycho-oncology as a Model

The history of pediatric oncology is a transcendent one. Until 1948, a patient with leukemia simply was provided with supportive care, itself most meager, and family and medical caregivers awaited the patient's death. Through the vision of many, including in no small part the pioneering Sidney Farber, clinical remissions were first achieved, and the modern age of chemotherapeutics in oncology began.

Concomitant with the provision of chemotherapeutics was the emergence of the modern age of supportive care. Blood-banking, so crucial to counteract the deleterious effects of chemotherapy, became more scientific in screening for antibodies and infection. Penicillin and the elaboration of multiple categories of antibiotics allowed aggressive infection-fighting efforts to combat rampant fever and neutropenia. A greater realization of the importance of treating pain allowed rational use of narcotics to combat the inevitable mucositis that accompanied dose intensification efforts that clearly resulted in improvements in overall survival.

In essence, knowledge culminating in the rise of rational cancer therapeutics was accompanied by the advancement of medical knowledge in the areas of hematological support and infectious diseases. The consistent rise in survival rates, as exemplified by steadily improving Kaplan-Meier curves in repeated acute lypmphoblastic leukemia clinical trials, could never have occurred without the remarkable progress in each of these areas.

The past 60 years also saw growing social awareness of mental health disorders and the (gradual) removal of the stigma of such disorders. Increasing acceptance of the importance of addressing mental health has led to present-day efforts to openly lead patients to mental health resources and to legally encode in practical terms access to such services.

Coincidentally, these efforts have strongly paralleled the diminishing negative connotations associated with those afflicted with cancer. Not so much time has elapsed since the diagnosis of cancer was sometimes hidden from the patient and certainly hidden from those around the patient, such as co-workers, for fear of ostracism or unemployment. The Western media today abounds with bold depictions of currently treated patients and survivors and with pink-shrouded football players raising cancer awareness.

The confluence of these factors makes it even starker that psychosocial challenges still abound for patients with cancer. First, there is a greater incidence of diagnosis of mental health disorders in cancer patients, whereby underlying or latent issues are enhanced or exposed by the anxieties of diagnosis, therapy, and disruption of activities of everyday living. Second, the stress of caring for and enduring the treatment of a child with cancer confers similarly increased risk of psychosocial disturbances upon both parents and siblings. Third, side effects of the therapy itself (chemotherapy, surgery, and radiation), especially in the developing child, can result in loss of cognition and coping skills, which imposes increased risk of disordered behavior. Of course, the challenges to our patients do not end with the final dose of chemotherapy, the pronouncement of cure, or a contrived 5-year window, but rather follow them through a lifetime as they grow, mature, go to school, and become job holders, spouses, and parents themselves.

In spite of the vast advantages of resources available in the developed countries, the provision of resources necessary for psychosocial care of patients and their families remains uneven. While more and more insurance plans cover some modicum of psychosocial services, reimbursements are often inadequate for the task. Even insurance that may be available does not guarantee that a given provider will accept that particular insurance, and examples abound of the most august institutions insisting that patients self-pay. In addition, when such services are obtained in the community and out of contiguity with the clinic experience, a disconnect occurs for both caregiver and patient.

We and others have found that the model of embedded psychosocial care, on an equal footing and integrated with chemotherapy, antibiotics, and blood products, has proved to be an especially effective manner of intervention. The typical pediatric oncology clinic has some combination of exam rooms and infusion space, often with therapy administered “in the round” with common areas for play for patient and siblings alike. A sense of community is created, as patients typically have recurring and regular days of the week for their visits, whereby patients and their families interact in an ongoing way with their caregivers: nurses, nursing assistants, nurse practitioners, and oncologists. It is within that community that the psychosocial team is able to introduce itself, becoming a seamless part of the caregiving team that encounters that particular patient and family during each visit.

The concept of the psychosocial team is one that can vary from program to program, depending on local custom and state regulatory agencies. A collaborative psychosocial team such as that we have constructed at Yale consists of such people as psychiatrists, psychologists, social workers, special education teachers, child life specialists, and volunteers. While very often overlapping in certain skill sets and abilities, each of these specialists brings a unique perspective that rounds out the entire team.

Ultimately, the greatest challenge in the embedded model is one of provision of resources. Hospitals and medical schools are under financial pressure due to decreasing reimbursements, increasing unfunded care, and increased regulatory environment. Psychosocial care, even in this age of enlightenment, in many circles is still viewed as a superfluous or unnecessary frill. The acquisition of resources to fund a full staff in order to run such a team requires the infusion of philanthropy and grant support in most centers. The challenge of funding is magnified by the fact that provision of services is never-ending; personnel are a constant cost center on the ledger sheet.

Fortunately, pediatric oncology is a specialty that attracts attention: bald-headed children on chemotherapy are head-turners on billboards, television, print media, and, of course, social media. Pediatric oncology also benefits from infrastructure in general pediatrics, in which focus on growth and development, school, and behavior figures prominently. Yet chronic disease or disease that requires long-term care abounds in pediatrics. Thus, the relationship between pediatrics and pediatric oncology has the chance to become symbiotic: pediatric oncology can gather resources and test the embedded model. Departments of Pediatrics, and as a result other subspecialties within it, can benefit from the ingathering of talent that is nucleated by such a paradigm.

The greatest barriers toward establishment of psychosocial services remain recognition and commitment at every level of a particular program from caregiver to hospital administrator. Pediatric oncology programs that understand that the concept of mental health care is as important as the chemotherapy and the antibiotics are well on their way to successful implementation and sustenance of a truly well-rounded program.

Gary M. Kupfer, MDProfessor of Pediatrics and PathologyYale School of MedicineSection Chief, Pediatric Hematology-OncologyYale New Haven Children's Hospital and SmilowCancer Hospital New Haven, Connecticut

Preface

It has been eight years since the initial publication of Psychosocial Aspects of Pediatric Oncology. This second edition provides more than an update to the original volume: it reflects the expansion in the field of pediatric psycho-oncology and the growing incorporation of best practices in psychosocial care for children diagnosed with cancer. Pediatric oncology research and clinical practice have made remarkable strides toward improving recovery and survival of children with cancer. Psycho-oncology has enhanced awareness of the importance of considering the whole person in the course of the medical treatments designed to safeguard life and maximize the lifelong potential of the children. Enhancing the quality of life of the children and their families in all stages of diagnosis and treatment has become part of the goal of pediatric oncology at large. This book reflects an important step in the integration of psycho-oncology within the framework of pediatric oncology, by which we can strive to attain a complete cure.

This edition includes 22 chapters divided into four sections: Active Treatment, Survivorship, Death and Bereavement, and Additional Considerations. Sixteen chapters of the original edition have been thoroughly updated, and six new chapters address areas not previously covered, including psychopharmacology, bereavement, ethics, international collaborations, and addressing the emotional needs of children whose parents have cancer. In addition, a new appendix provides a comprehensive overview and description of research tools in pediatric psycho-oncology that we hope will help expand the field of evidence-based pediatric psycho-oncology.

As in the original edition, the volume's contributors are internationally recognized leaders in the field.

We are indebted to all contributors for their shared commitment to this work. We are especially thankful to Jimmie Holland for her heartfelt Foreword, and for her support of the volume from its original inception. We are grateful to Joan Marsh and Fiona Woods at Wiley-Blackwell for their guidance and high editorial standards.

It is our hope that these pages will contribute to improving the lives of children and families facing one of the hardest of conceivable challenges. Their strength and example inspire and energize us anew each day.

Shulamith Kreitler,Myriam Weyl Ben-Arush andAndrés Martin

Part A

Active Treatment

Chapter 1

Cancer in Children: an Overview

Shai Izraeli, Gideon Rechavi

Introduction

Approximately one in every 350 children will develop cancer by adulthood, and despite the remarkable cure rate, cancer is still the leading cause of non-accidental death in children in affluent countries after the neonatal period. In this Introduction we shall highlight some unique medical aspects of childhood cancer that are especially pertinent to pediatric psycho-oncology. For more details about specific diseases, the reader is referred to the available textbooks in pediatric oncology.

The characteristic cancers of children are different from those encountered in adults. Typically they arise in tissues and organs that develop most rapidly during embryogenesis and the postnatal period. Indeed, it is likely that most cancers in children result from unfortunate developmental “accidents,” often occurring in utero. In contrast, the typical “adult” malignancies arise in epithelial cells covering the surface of ducts and body cavities that are exposed for prolonged periods of time to a large variety of environmental carcinogens. Colon cancer, for example, is the end stage of a slow multistep transition from normal tissue through benign polyps to malignant invasive carcinomas. Colon cancer may be prevented by either modifying diet or by treatment with drugs such as aspirin, which affects the tumorogenic response of the colonic mucosa to carcinogens, or by removal of benign polyps. Unlike cancers in adults, most cancers in children cannot be prevented, are not preceded by obvious pre-malignant lesions and are not amenable to early diagnosis. Indeed, several international trials of massive screening for pre-malignant lesions or early stages of neuroblastoma, a childhood cancer of the sympathetic nervous system, have proved futile. These issues are relevant when dealing with the parents of a child with cancer, who are, naturally, overwhelmed by guilt and self-blame. It is important to explain to parents that to the best of our knowledge cancers in children are not caused by any wrongdoing of the child or his/her parents, nor could they have been diagnosed earlier (except, of course, in cases of clear medical neglect).

Most of the tumors arise spontaneously, although there are rare familial hereditary cancer syndromes. For example, retinoblastoma, a malignant tumor of the retina, is often hereditary. A child with hereditary retinoblastoma is likely to develop tumors in the other eye and later may also be diagnosed with osteosarcoma, a malignant bone tumor. Most of these children are cured and their chances of passing the hereditary trait are 50%. Families with hereditary cancer syndromes require therefore special lifelong attention and present the health care community with new challenges. One of these challenges is caused by modern genetic diagnostic techniques that enable identification of individuals carrying a cancer-predisposing mutation while they are still healthy. This medically helpful knowledge may also add a significant psychosocial burden to the patients and their families.

Another high-risk group is identical twins. An identical twin of a child with leukemia has a 25% risk of developing the same leukemia before the age of 10. This high risk of a non-genetic disease among identical twins has been puzzling. The mystery has been solved recently. As leukemia is commonly an “accident” during embryonic development, pre-leukemic cells can circulate from one embryonic twin to the other through their common vascular channels. Other than these examples, in most instances there is no substantial basis for the fear that other young members of the family will develop cancer as well. Moreover, the rate of cancer in offsprings of childhood cancer survivors is not significantly higher than in the normal population. Thus, in the majority of instances we can safely reassure the families that the cancer will not spread in the family.

The most common malignancy in children involves the lymphoid system, especially acute lymphoblastic leukemia (ALL). During embryonic development and early childhood the normal lymphoid system has to develop rapidly and acquire the capabilities to mount specific immune responses against an enormous variety of foreign antigens. For efficient diversification of the various immune receptors, lymphoid cells possess an unusual type of genetic instability that predisposes them to rare genetic accidents leading to acute leukemia. ALL is most common in young children but occurs throughout childhood.

The nervous system is another rapidly developing organ that also involves substantial fine-tuned diversification and differentiation during embryogenesis and early childhood. The frequency of tumors of the nervous system is almost equal to ALL and together these malignancies are responsible for more than half of the cancers in children. Many of these tumors are relatively slow-growing gliomas, often implying living through childhood with slowly progressing brain tumors. A large fraction of childhood brain tumors have an embryonic and more aggressive phenotype. These include medulloblastoma, a cancer of the cerebellum, retinoblastoma, and neuroblastoma, a malignant tumor of the peripheral sympathetic nervous system. Embryonic tumors outside the nervous system such as Wilm's tumor of the kidney, hepatoblastoma and various tumors of the gonads are also typical of children.

The third most common type of malignancy of children is a diverse group of tumors of the musculoskeletal and the soft tissues. These sarcomas can arise at any age and have specific molecular, pathological and clinical characteristics. Many of those occur more frequently during adolescence, a period of robust musculoskeletal development.

Pediatric oncology is one of the greatest medical success stories of the past four decades. The cure rate of childhood cancer has increased from about 25% in the 1960s to more than 75% in the 1990s. This remarkable progress has occurred in almost all types of childhood malignancies and is due to the exquisite sensitivity of these malignancies to chemotherapy and to the series of carefully conducted collaborative empirical clinical trials in Europe and the USA.

The paradigm to this success is childhood ALL, a uniformly fatal disease in the 1960s that has become curable in almost 80% of children today. The treatment “protocol” of childhood ALL consists of 2–3 years of therapy utilizing up to ten chemotherapeutic drugs given in various combinations. Intensive remission induction and consolidation therapies, lasting up to half a year, are followed by prolonged and less intensive maintenance therapy. During the first half year, the child requires frequent hospitalizations for administration of drugs or for combating infectious complications of chemotherapy. The child can attend kindergarten or school and function almost normally during the rest of the therapy.

A specific problem associated with ALL and relevant to the topic of this textbook is the need for prevention therapy to the central nervous system (CNS). Early trials with chemotherapy have failed because of the recurrence of the leukemia in the CNS. Apparently due to the poor penetration of most chemotherapeutic drugs into the CNS it serves as a “sanctuary” haven for leukemic cells. Cure of ALL became a reality only when routine irradiation of the brain was added to systemic chemotherapy. This success has proven to be a mixed blessing as the exposure of the brain of young children to a hefty dose of radiation resulted in severe long-term intellectual, behavioral and other neurological impairments. In most modern treatment protocols of ALL, cranial irradiation has been replaced by a combination of systemic high dose methotrexate and intrathecal chemotherapy. While this approach has been proven to be less toxic than irradiation, its long-term neurological implications still need to be studied.

The treatment of solid tumors combines usually at least two modalities. Local control is achieved through surgery or radiotherapy. Because of the severe long-term toxicities of radiating growing tissues, surgery is preferred when possible. Modern pediatric surgical oncology has become much less mutilating. Thus, in most instances, bone and soft tissue sarcomas can be removed by limb-sparing surgery. Still, in many instances, such as brain tumors, Hodgkin's disease and inoperable sarcomas, radiation is unavoidable. It is critically important that radiation will be delivered in centers specializing in treatment of children because of many specific considerations unique to these patients that are required to minimize the long-term side effects and encourage conservation of symmetric growth and development.

The most significant progress in the treatment of childhood solid tumors occurred when the concept of “adjuvant chemotherapy” was introduced, initially for treatment of Wilm's tumor and osteosarcoma. In the case of osteosarcoma, even when the tumor was localized to the limb, and the limb was amputated, the long-term survival was no more than 20%. Since all deaths were caused by distant metastases, the unavoidable conclusion was that micro-metastases were present in most of the patients with localized tumors at the time of diagnosis. The administration of “adjuvant chemotherapy”—chemotherapy that is delivered with the intention to destroy those unseen micro-metastases, has led to the current 70% survival rates. Typically these patients today are treated first with chemotherapy, followed by surgical removal of the tumor with sparing of the limb, and another period of intensive chemotherapy. The concept of adjuvant chemotherapy has been also adopted by the adult oncologists for chemotherapy-sensitive tumors such as breast cancer.

The recent decade has witnessed remarkable development in molecular biology and diagnostics. Techniques allowing the visualization and quantifications of genes and gene products have enabled molecular classification of tumors and personalized adjustment of therapy to the biological tumor subtype. Again, pediatric oncology has shown the way. Thus, for example, the identification of the BCR-ABL fusion gene in a child with leukemia or the detection of multiple copies of the NMYC oncogene in a child with neuroblastoma led to their classification as high risk patients and to assignment to especially intensive treatments that included bone marrow transplantation. The molecular determination of minimal residual disease has allowed tailoring of therapy to the molecular response to therapy. The identification of specific molecular abnormalities has also raised hopes for development of cancer-specific, less toxic therapies. In the recent years since the first edition of this book, several novel targeted therapies have been finally introduced for children with cancer, and others are in clinical trials. For example, the addition of inhibitors of BCR-ABL to chemotherapy has caused such a dramatic improvement to survival that the presence of this abnormality no longer constitutes an automatic indicator of stem cell transplantation. These novel therapies are not “magic bullets” free of side effects. Indeed, many of these novel drugs target pathways important for childhood growth and development and hence have a multitude of newer side effects different from those caused by chemotherapy.

While childhood cancer is a relatively rare disease, its high cure rate is having a significant impact in developed societies. Currently, one in every 900 young (less than 45-year-old) Americans has been cured of childhood cancer. It is estimated that within 20 years this rate will increase to more than one in every 400. Unlike adult cancer, occurring mostly in the post-retirement age, children cured from cancer are expected to live many more productive years. Thus the quality of life of childhood cancer survivors and late effects of the cancer and its treatment have become a major focus of modern pediatric oncology and are particularly relevant for the field of psycho-oncology.

Although children tolerate the acute toxicities of chemotherapy better than adults, growing children are more vulnerable to the delayed effects of cancer therapy such as effects on growth, the endocrine system, fertility, the myocardium, neuropsychological function, and the occurrence of secondary cancers. Moreover, because children tolerate chemotherapy better than adults, they often receive far greater dose-intensity and are therefore more likely to develop late sequelae. Of the different therapeutic modalities, radiation is associated with the highest rates of late effects in children.

Most relevant for this textbook are the late neuropsychological sequelae of childhood cancer therapy. Long-term neurological impairments are associated with leukemia and brain tumors, the two most common malignancies of children. Learning difficulties have been most commonly attributed to cranial irradiation and are related to the dose and the age at the time of irradiation. For example, cranial irradiation with 3,600 cGy of children with brain tumors who are younger than 36m is universally associated with marked decreases in I.Q. Newer therapeutic protocols are attempting to delay radiation and lower the dose in young children.

Although radiation doses in children with ALL are significantly lower than those used for children with brain tumors, they are still likely to have long-term neuropsychological sequelae. These effects are mainly in attention capacities and other nonverbal cognitive processing skills and not in the global IQ. These deficits correlate with focal findings in magnetic resonance imaging (MRI) of the brain and neurophysiological studies. As with brain tumors, the extent and timing of the deficits are related to the radiation dose and the age at the time of radiation. Girls less than 5 years old are most vulnerable. At the extreme end of the spectrum of neurological toxicity is progressive necrotizing leukoencephalopathy, a rare and devastating complication, occurring mainly in patients who have received a combination of higher dose radiotherapy and intrathecal methotrexate. Although significantly less neurological impairment is seen in children with ALL treated with intrathecal therapy only, it is premature to conclude that no neuropsychological deficits are expected. Indeed, minor abnormalities in brain imaging are commonly detected and the long-term significance of these changes is presently unknown.

It is impossible to write an introduction to a book on psychology of children without relating to adolescence. Surviving normal adolescence is a challenge to children, their parents and educators and provides the livelihood of pediatric psychologists. Cancer in this life period is extraordinarily more challenging. Adolescents tend to delay bringing medical problems to attention and are less compliant with therapy. For example, it has been clearly shown that adolescents with ALL tend to be less adherent to the oral chemotherapy regimen during the maintenance period and that their prognosis directly correlates with their degree of compliance. There are also some unique medical issues such as preservation of fertility, and a large list of psychosocial issues. Because of these issues, the need of a specific discipline for adolescent and young adults oncology is being considered now in the USA and Europe.

The final issue relates to the topic we all try to avoid. Despite the enormous success, one in every five children with cancer will die from the disease. The grim outlook of a particular child is often known soon after diagnosis. Yet studies have repeatedly shown that the prospect of dying is usually, if at all, addressed only very shortly before death. Even in the most hopeless cases, treatment is usually characterized by intensive attempts to cure and by ignoring the option of palliative care. This is one area where we, who deal with childhood cancer, can learn from our colleagues in the adult oncology field. Hospice and palliative care are new and much needed concepts in pediatric oncology that, naturally, combine medical and psychosocial approaches. And after the death, there are bereaved parents, siblings, and friends. They often cling to the pediatric oncology department and look for comfort and help. The “end of life” issue is a chapter in pediatric oncology waiting to be defined and written.

Pediatric oncology meets childhood psychology at the time of the diagnosis of these devastating diseases, during the difficulties associated with the toxicities of intensive chemotherapy, the rehabilitation period, during the follow-up of the majority who are long-term survivors, and the bereavement of those who lost the most precious of all. Although the child is the one with the cancer, the pediatric oncology team interacts intensively with the siblings, parents, grandparents, friends, schoolteachers and more. It becomes a community affair in which the pediatric oncology team is at the center.

Chapter 2

Comprehensive and Family-Centered Psychosocial Care in Pediatric Oncology: Integration of Clinical Practice and Research

Lori Wiener, Maryland Pao

Introduction

Pediatric oncology programs aspire to provide comprehensive clinical care to patients and their family members. Patient and family-centered care is an approach to health care that is grounded in mutually beneficial partnerships among health care providers, patients, and families, and where the vital role that families play in ensuring the health and well-being of infants, children, and adolescents is recognized [1]. Within a family-centered care environment, emotional, social, and developmental support is an integral component of health care. Attending to the child's and family's emotional distress and psychosocial needs due to a cancer diagnosis requires many experts, in addition to the oncologist, such as social workers, psychologists, child life workers, rehabilitation therapists, child psychiatrists and many others. To incorporate this practice of psychosocial care within a pediatric oncology setting means that the health care providers listen to and honor patient and family perspectives, choices, values, beliefs and cultural differences. Providers also shape policies, programs and facility design, and facilitate day-to-day staff interactions through ongoing discussions and feedback with patients and families. In addition to seeking patient's and family's points of view, conducting clinical research is another excellent mechanism to assure that the developed programs and provided interventions are based on what patients and families experience and need and in fact are improving outcomes.