In the 21st century, most children and adolescents with cancer can be cured. This resounding success story has been written over the past several decades by visionary pediatric oncology care providers and researchers, together with courageous patients and families. Today, because more than three quarters of young people with cancer survive, the population of childhood and adolescent cancer survivors is large and growing, with about 270,000 survivors of child- hood cancer in the United States [1]. However, the sobering correlates of this success are the long-term consequences of therapy that can profoundly com- promise quality of life and even survival. As more children with cancer survive, the obligation grows for the critical assessment of the adverse effects of ther- apy on the physical, intellectual, psychological and social development of these patients. The complexity of these adverse consequences demands involvement of a multidisciplinary team, ideally consisting of nurse practitioners, pediatric oncologists, radiation oncologists, and psychosocial personnel. In addition, the expertise of sub-specialists from related disci- plines, such as cardiology, endocrinology, orthope- dics, and pulmonary medicine, is vital to the success of the adult healthcare provider.
In 1990, when the first edition of this book was conceived, recognition of the need for organized, on- going follow-up of cancer survivors was just emerg- ing. Those healthcare providers responsible for hands-on care of the early survivors had to review the scant available literature and make individual judg- ments as to screening approaches. This state of affairs prompted our decision to compile a compendium of knowledge from a variety of experts, a “how to”
guide, as it were, of assessment and management that
would allow for the delivery of expert care through- out the pediatric oncology community and facilitate the development of long-term follow-up programs.
Fortunately, since the publication of the first edi- tion, survivorship issues, both medical and psychoso- cial, have received increased attention. Three groups have played a major role in advancing the knowledge of the implications for child and adolescent survivor- ship over the past decade. The Office of Cancer Sur- vivorship (OCS) (http://dccps.nci.nih.gov/ocs/), es- tablished in 1996 at the National Cancer Institute (NCI), has disseminated knowledge, supported sur- vivorship research, and promoted the development of a cadre of young investigators dedicated to the needs of cancer survivors. The data that has emerged from the Childhood Cancer Survivor Study (CCSS) (http://www.cancer.umn.edu/ltfu) has recognized and substantiated the impact of cancer on the health and quality of life of approximately 15,000 childhood cancer survivors, mandating advocacy on their be- half. The Children’s Oncology Group (COG) has sim- ilarly embraced the effort to assess long-term out- comes in the context of the COG therapeutic trials, working with the NCI to ensure that the new CTC-AE criteria that report toxicities of cancer therapy now include a specific section related to the effects of ther- apy on growth and development [2]. The Children’s Oncology Group (COG) Long-Term Follow-Up Guide- lines for Survivors of Childhood, Adolescent, and Young Adult Cancers were developed in 2003 [3], based upon evidence in the literature that linked ex- posures to particular late effects. The guidelines are available at www.survivorshipguidelines.org. They provide screening recommendations determined by the collective clinical experience of an expert panel
Overview
Chapter 1 1
Cindy L. Schwartz · Wendy L. Hobbie · Louis S. Constine · Kathleen S. Ruccione
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Chapter 1
2 C. L. Schwartz et al.
and are critical to providing a uniform approach to long-term surveillance, particularly in the context of the COG clinical trials. An analysis of the status of childhood cancer survivors by the National Cancer Advisory Board resulted in the 2003 publication, Childhood Cancer Survivorship: Improving Care and Quality of Life. This report, disseminated by the Insti- tute of Medicine (IOM), was the result of a systemat- ic review of the policy implications of the changing landscape of survivorship after cancer in childhood and adolescence. It addresses the needs for evidence- based follow-up guidelines for care, systems of care responsive to survivors’ healthcare needs, survivor awareness of late effects, and professional education and training. It also focuses on strengthening public programs serving childhood cancer survivors, im- proving access to healthcare services, and increasing research on childhood cancer survivorship [4]. Two other recent publications also disseminate knowl- edge, define priorities and recommend strategies to ensure adequate resources for survivors [5, 6].
The purpose of our current book, Survivors of Childhood and Adolescent Cancer: A Multi-discipli- nary Approach, is to update our understanding of the long-term consequences of cancer therapy and ad- dress issues related to pathophysiology, clinical man- ifestations, detection, screening and interventions.
Providing this information necessary to assist in achieving recommendations of the IOM report.
Chapter 2 provides a compilation of algorithms specific for each of the common pediatric malignan- cies. Common treatments are noted, as well as late effects and screening methodologies.
Chapter 3, details the chronic effects by organ sys- tem, outlining suitable evaluations and management options. The chapter also lists the late effects, causative treatments, signs and symptoms, screening and diagnostic tests, and the management and inter- vention techniques. Our goal was to provide a con- cise yet comprehensive approach that facilitates care in the clinical setting.
Chapters 4–16 cover the side-effects of the treat- ment of specific organs and organ systems. A com- prehensive approach is taken in each chapter, which addresses normal physiology, pathophysiology, treat- ment-specific effects, clinical manifestations and de-
tection and screening, as well as the management of established problems.
Chapter 19, “Methodological Approach to Sur- vivorship,” describes the scientific approaches neces- sary to facilitate high-quality outcomes research.
Chapter 21 covers stem cell transplantation while chapter 18 reviews secondary malignance.
The provisions of psychosocial care and support for navigating the legal implications of cancer sur- vivorship are essential components of any program and are addressed in Chapters 19 and 20. These chap- ters have been dramatically expanded based on the growing body of knowledge in this area over the past decade.
Chapter 22,“Transition Issues,” was added in view of the fact that, a decade after our original book was published, many long-term survivors of childhood cancer are now adults and must obtain healthcare in the adult medical community. Healthcare models in various settings are examined, with an analysis of the benefits and difficulties involved in providing com- prehensive care.
Survivorship care is a young science. Major progress has been made over the past decade, but much remains unknown about the future of the ever- enlarging, vulnerable and aging population of child- hood cancer survivors. Although this book cannot describe every possible complication that may arise, we hope that the information we present will enable healthcare providers to better understand the etiolo- gy of late effects and to recognize the impact of childhood and adolescent cancer therapy. We hope to encourage systematic, thoughtful and risk-based approaches to treatment for both individuals and cohorts of survivors. Our goal, like that of Dr.
D’Angio, is that “the children of today don’t become the chronically ill adults of tomorrow” [7]. We look forward to the day when our understanding of the long-term consequences of therapy allows for mitigation in those already affected by therapy and prevention of injury in children who require treat- ment.
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Chapter 1 3 Overview
References
1. Ries LA, Eisner M, Kosary C et al (eds) (2002) SEER cancer statistics review, 1973–1999. National Cancer Institute, Bethesda MD
2. National Cancer Institute (2003) Cancer therapy evalua- tion program, common terminology criteria for adverse events v3.0 (CTCAE),accessed from the internet (http://ctep).
cancer.gov/reporting/ctc.html), 1 July 2004
3. Landier W, Bhatia S, Eshelman D et al (2004) Development of risk-based guidelines for childhood cancer survivors:
the children’s oncology group long-term follow-up guide- lines. J Clin Oncol (in press)
4. Institute of Medicine, National Research Council of the Na- tional Academies (2003) Childhood Cancer Survivorship:
Improving Care and Quality of Life. The National Acade- mies Press, Washington DC
5. Reuben SH for The President’s Cancer Panel (2004) Living beyond cancer: finding a new balance, 2003–2004 annual report. National Cancer Institute, National Institutes of Health, Washington DC
6. Centers for Disease Control and Prevention and Lance Armstrong Foundation (2004) A national action plan for cancer survivorship: advancing public health strategies, Atlanta
7. D’Angio G (1975) Pediatric cancer in perspective: cure is not enough. Cancer Suppl 35:867–870
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