UCLA School of Medicine, Dept. of Pediatrics
10940 Wilshire Blvd., Los Angeles, CA 90024, USA
As a result of advances in diagnostic and treatment technologies and the coordination of childhood cancer treatment protocols via clinical trials, 3 of every 4 children and adolescents diagnosed and treated for cancer will attain complete remission and cure. In an era in which good health is not just the absence of disease but also the presence of psychological and social well-being, have these advances in pediatric oncology resulted in what van Eys called a "truly cured child?" Furthermore, what about the family? Do we really understand the full impact of having a child, brother or sister diagnosed and treated for cancer? Answers to these questions have the potential to define comprehensive and quality cancer care for this population in that the delivery of health care services must attend to the immediate and long-term health and well-being of childhood cancer survivors and their families.
In their seminal studies of the psychological and social implications of surviving childhood cancer, Gerald Koocher and John O'Malley suggested that a metaphorical sword hangs by a single horsehair over the head of cancer survivors and shadows their lives ever after. This image suggests that a childhood cancer survivor's life is forever tinged by the uncertainty of cancer reoccurring and perhaps again creating upheaval in the survivor's life. Since Koocher and O'Malley's work in the early 1980s, other studies of childhood cancer survivors have identified subsets of survivors who experience psychological and social difficulties years beyond the completion of therapy. Symptoms of posttraumatic stress, diminished self-esteem and body image, employment discrimination, difficulties obtaining health insurance, and limits on educational and employment opportunities due to treatment-induced cognitive deficits all have been identified in studies of childhood cancer survivors.
In contrast to studies and methodologies identifying pathological and problematic aspects of the childhood cancer survivor experience, other investigations indicate that life after cancer is not necessarily all negative. Recent studies suggest that for the most part childhood cancer survivors are psychologically well and in some cases more healthy, in psychosocial terms, than healthy controls and same aged peers without a cancer history. Indeed, existing studies document the extent to which survivors state that overcoming cancer has resulted in positive changes, deep personal growth and an enhanced outlook on life. Although some investigators dismiss these positive attributions to having had cancer as "denial" or "repression," there exists no empirical evidence to support those assertions. To the contrary, many survivors have been very clear about feeling more mature than their peers, as having improved relationships with family and friends, and as having a more clear focus and direction in life.
While the overall picture of childhood cancer survivors may appear ambiguous or contradictory, what is likely is that all these study findings are true to some extent, that survivors can and do experience both negative and positive outcomes. A reasonable summary argues that (1) some survivors of childhood cancer have managed to grow in positive ways as a result of their cancer experience, (2) most probably are relatively normal in psychosocial terms and on most psychosocial measures, and (3) an important minority experiences on-going psychological and/or social adjustment problems. Moreover, all survivors, even those apparently doing quite well, continue to be concerned about the physical, psychological and social quality of their current and future lives.
Indeed, the childhood cancer survivor experience has two faces: one of celebration and hope; the other of uncertainty and fear. Given the potentials for both positive and negative outcomes associated with having had cancer, pediatric cancer patients and their families need on-going supportive care that not only aims to prevent negative sequelae and health risk behaviors but also promotes positive outcomes and disease prevention practices. Responding to these needs requires a better understanding of the factors that increase the risk for negative sequelae in some survivors and promote positive outcomes and behaviors in others.
And what about the family? What about parents and siblings? While most resilient young survivors move on and do not dwell on worries or concerns and perhaps even create personal growth and motivation out of the experience, parents tend to worry for years after. Less is known about siblings, and given their exposure to the same domestic unrest experienced by other family members during treatment, the possibility of long-term psychological and social impact exists. A health care system and research industry that only focuses on an "identified patient" will miss the emotional fall-out, psychosocial needs and potentials for personal growth expressed by other family members.
In 1998, the American Cancer Society Task Force on Children and Cancer reported that "(T)he progress achieved in attaining 80% survival among children and adolescents and young adults with cancer can be justified only if their physical, emotional, and social quality of life also are protected." Thus, it is incumbent upon the providers of medical and psychosocial care to conceive of childhood cancer as more than just a disease that begins with diagnosis and ends when the treatment protocol ends. Instead, cancer initiates a life-long trajectory of survival (regardless of the length of that survival) having both positive and negative long-term implications for quality of life. Furthermore, since childhood cancer impacts families, the health and well-being of the childhood cancer survivor population is inextricably linked to the health and well-being of their own parents and siblings. Thus, support programs that focus on families are very important. Today's long-term survivor clinics, cancer survivor day celebrations, oncology camps, family retreats, and community-based parent self-help organizations (like those affiliated with the Candlelighters Childhood Cancer Foundation) have become invaluable sources of support to pediatric oncology families throughout an entire span of survivorship - from diagnosis, through treatment, and beyond.
Twenty years ago, Koocher and O'Malley's Sword of Damocles study provided us with entré into the world of childhood cancer survivors and emphasized an uncertainty about the future that accompanies survival. Recent research, however, indicates that survivors and their families do not wait passively for an ominous sword to come crashing down and shatter their lives. Instead, they adapt to extraordinary life changes and in most cases embrace their futures. As investigators, we can learn from those survivors who have come to wield the Sword of Damocles for their own personal growth. Our charge is to understand how these young people and their families survive, and then to assist in the development and testing of interventions that promote their quality for life!