Commentary: Psychologists in Pediatric Oncology: Kudos, Criticism, and Courses for the Future
Hackensack University Medical Center, University of Medicine and Dentistry of New Jersey, New Jersey Medical School
All correspondence should be sent to Gary A. Walco, Department of Pediatrics, Hackensack University Medical Center, 30 Prospect Avenue, Hackensack, New Jersey 07601. E-mail: gwalco{at}humed.com.
The unique contribution of psychologists in pediatric oncology settings arises from the application of theory-driven and empirically validated models to the psychological functioning of children and family members facing the challenges of cancer treatment and its aftermath. Over the past two decades, some of the most recognized names in our field, the true leaders of a generation of pediatric psychologists, have dedicated their efforts to providing clinical service to children with cancer and their families, as well as conducting research in the field and teaching others advanced clinical and academic skills. I think psychologists who have contributed to this field are to be congratulated for elucidating a number of key issues related to the neuropsychological and socioemotional aspects of pediatric cancer, exemplifying the scientist-practitioner model, and keeping the standards of our field quite high.
As pointed out by Armstrong and Reaman, there is no question that the Children’s Oncology Group (COG) and its prior constituent associations, the Pediatric Oncology Group, the Children’s Cancer Group, the National Wilm’s Tumor Study Group, and the Intergroup Rhabdomyosarcoma Study Group, conducted clinical trials that have led to impressive advances in survival among children with cancer. These cooperative groups derived the majority of their funding from the National Cancer Institute (NCI), which, as described at the National Institutes of Health’s website (www.nih.gov/icd), "leads a national effort to eliminate the suffering and death due to cancer." In short, since its inception in 1937, the NCI has had as its major focus the finding of a cure for the group of diseases collectively referred to as cancer. While this is an admirable goal, it became clear nearly half a century into the endeavor that immediate cures were not to be forthcoming, and the NCI started to invest funds in "cancer control," which encompasses areas of cancer prevention and treatment that do not focus directly on diagnosing or curing the illness. Psychological studies of the sequelae of disease and its treatment typically are considered cancer control studies. In its budget for 2005, the NCI has requested over $6.2 billion, $839 million (13.5%) of which is targeted for all aspects of cancer control (National Cancer Institute, 2004
). When one further considers the relatively small percentage of those funds that are dedicated specifically to pediatric diseases, it becomes clear that what dollars are available for research in pediatrics would flow in line with the original intent of the NCI—to find cures for the diseases.
Despite the relatively limited funding from the NCI for psychological studies within the context of pediatric cancer, a Medline search for the years 1966 to the present yielded some interesting findings. Entering the names of eight major psychologists—the former and current chairs of the various psychology sections of the clinical-trials cooperative groups (R. Mulhern, D. Copeland, B. Moore, F. D. Armstrong, R. Noll, and M. J. Kupst) and the two most recent editors of the Journal of Pediatric Psychology (A. Kazak and R. Brown)—yielded 490 citations. In a subsequent search, it was found that of the total of 440 citations for Pediatric Oncology Group, 5 included publications on which one of the above psychologists was a coauthor. Of the 330 citations for Children’s Cancer Group, another 5 were coauthored by one of the above, and none of the 24 articles for Children’s Oncology Group was cowritten by these prolific psychologists. In other words, there has been a great deal of productivity by these psychologists, virtually all of whom are full professors in their respective medical schools; yet very little research was generated within the cooperative-group mechanisms.
The relative success of medical research within the pediatric oncology clinical-trials cooperative groups stems from the fact that studies focusing on curative interventions receive much more funding and attention than do cancer control studies, and the system is designed around conducting treatment-related clinical trials. The clinical treatments rendered by oncologists and the data gathered for the collaborative trials are essentially the same activity, making it easier to pursue medical research as an ongoing part of clinical work, not as a separate activity, as is typically the case for psychologist-researchers. As pointed out by Armstrong and Reaman, oncologists generate clinical dollars for the services provided, including those rendered within the context of clinical trials. COG physician-investigators do not have to generate their own research grants to conduct trials, nor are they conducting research after their basic clinical responsibilities are fulfilled. Thus, time to conduct research and funds needed to do so are reasonably available for physician-researchers. This is not so for psychological research in pediatric oncology. The success of academic psychologists is measured by research productivity and thus there is an ongoing need to compete for independent extramural funding to pursue clinical research. Service-oriented clinical psychologists are employed principally to provide direct patient care, implying that any research activities are conducted in addition to, not instead or as part of, required clinical service. Given these relative obstacles, it is impressive that psychologists have been as prolific as the above numbers indicate.
Armstrong and Reaman argue that we should focus our energies on the COG structure to facilitate research. My concern is that, given the fiscal realities, the concepts presented are idealistic and impractical. Funds to COG from NCI continue to be tight, and the emphasis remains on clinical trials aimed at improving disease-free survival. Thus, until the priorities of the NCI (and by extension, COG) change dramatically, the COG mechanism has little funding to offer for psychology studies. In addition, to date, the process of instituting a psychology study through the collaborative-group mechanisms has been a challenge, because (a) quality control of research across a large number of institutions is difficult, (b) variability in available staff leads to much missing data, and (c) the tendency is to use outcomes that are simple and straightforward, potentially compromising methodology, in contrast to work that may be done by more specialized psychologists. Thus, to date, the majority of published studies in pediatric psycho-oncology have been conducted in single institutions or through collaboration among a group of colleagues with track records in the field. Ten of 490 publications is not a very impressive number—and it is not likely to increase unless there is much greater enticement for psychologists to work within the COG framework. It is unlikely that without fundamental shifts in priority, the majority of psychological studies of children with cancer will take place outside of the cooperative-group mechanism.
In the review paper by Last et al., after discussing a number of studies pertaining to the psychosocial adjustment of childhood cancer survivors, suggestions are made for future research. Included are issues such as the need for collaboration among sites in order to gain sufficient statistical power, while recognizing limitations in staffing and funding to do so. These investigators advocate for cross-cultural research, across international boundaries, with an eye toward understanding similarities and differences in various outcomes, including survival rates, by culture. They advocate for developmentally focused studies, including longitudinal designs, with the goal of understanding predictors of adjustment and maladjustment so that preventive and therapeutic interventions may be targeted.
While few would argue with these aspirations, once again it would seem that the fiscal and logistic impediments of pursuing this research are formidable. Especially when dealing with studies that span different countries, defining universal outcomes for psychological studies that are sensitive to language and cultural differences and that might accommodate radically different contextual settings would be a huge challenge. Unfortunately, these studies may well end up focusing on lowest common denominators, as previous studies have, including variables such as survival rates, without more in-depth attention to causal or mediating factors. Furthermore, while longitudinal studies make great sense conceptually, they are expensive and pragmatically difficult. In addition to issues of subject attrition, it may be quite difficult to articulate concise outcomes that can be reliably and usefully measured many years from the onset of the study.
While I do not mean to sound cold or indifferent, let us look at the situation from another perspective. There are limited funds to conduct medical research, whether in the United States or around the world. Childhood cancer remains a relatively low frequency disease. Much of the available data indicate that certainly there is some risk for long-term difficulties with psychological adjustment, but overall surviving children and their families do not demonstrate high levels of maladjustment or psychopathology (cf. Kupst, 1994; Kupst et al., 2002; Noll et al., 1999; Reiter-Purtill, Vannatta, Gerhardt, Correll, & Noll, 2003; Verrill, Schafer, Vannatta, & Noll, 2000). I was privileged to be at a recent meeting at which the state of the field was being reviewed and critiqued by many of the giants, and it was concluded that in fact a reasonable amount of the variance in factors predicting the psychological well-being of childhood cancer survivors and their families has been accounted for, leading to a suggestion that we consider specific research questions aimed at targeted clinical problems and populations.
The progression of research in the field has led to an interesting reality. Thirty years ago, children diagnosed with leukemia faced extremely high risk of death, even with state-of-the-art treatment at that time. Research has led to wonderful improvements in disease-free survival rates, and toxicity of treatment has been minimized or controlled. In addition, pediatric oncologists have begun to pay more attention to pain and symptom management, quality of life, and palliative care, and more programs have utilized services of child life specialists and others who help children and families cope with the demands of illness and treatment. Taking all of these together, the psychological context of coping with pediatric cancer has a very different complexion than it might have had even a few years ago, and the available data indicate that the majority of children are likely to be reasonably well adjusted. Clearly the roles of psychologists need to be flexible as these changes continue to emerge.
I do not mean to minimize the scientific contributions of psychologists in this area or to advocate that we cease our efforts to understand the psychological sequelae of pediatric cancer—in fact, quite the opposite. Please refer to the introductory paragraph of this paper, where I point out the brilliant contributions that have been made to date. Many of the advances in reducing neurotoxicity, for example, may be traced to the early work of pediatric psychologists documenting the devastating effects of central nervous system treatments (Mulhern, 1994). Given these accomplishments, it seems reasonable for us to focus on our strengths and to continue building on them, rather than contritely explaining failure to perform within the cooperative-group mechanism. On the positive side, the semiannual meetings of the COG Psychology Discipline Committee have provided a forum in which the growing network of psychologists has had the opportunity to meet, develop methodologies, share data, and assist one another with interpretation of results. The collaborations forged through COG networking have contributed to the development of many research endeavors and have been an important factor in our having far more data on psychological outcomes in this population than virtually any other pediatric disease.
At this juncture, I believe our work should go in two major directions. First, there remain areas of concern in the field of pediatric psycho-oncology. Research focusing on specific neurocognitive and socioemotional problems and related preventive or remedial interventions continues to be important. Butler’s work on social cognition and remediation of neurocognitive deficits related to cancer treatment is exemplary of such an effort (Butler & Copeland, 2002). The same may be said for Kazak’s programmatic research on the role of stress and trauma in the lives of children and families with cancer (Best, Streisand, Catania, & Kazak, 2001; Hobbie et al., 2000; Kazak et al., 2004).
Second, perhaps we can apply many of the refined research strategies and lessons learned from pediatric cancer to other clinical populations. For example, many other childhood illnesses appear to have neurocognitive sequelae associated with disease processes and treatment. In addition, the socioemotional status of children with cancer may be viewed in the context of broader models of adjustment to chronic, life-threatening illness that encompass other health conditions. While one could debate the virtues of generic versus disease-specific models of chronic illness, the flow of information among researchers conducting studies among children with an array of chronic conditions can be helpful in model building and validation, study design, identification of outcomes, and targeting interventions. From a scientific as well as a fiscal perspective, such innovation is necessary.
Finally, it is time for pediatric psychologists to be recognized—not just by ourselves, but by the larger medical community—for scientific contributions to medical care. Acceptance of the medical value of psychological research is implied by the facts that (a) many publications of our work appear in "medical" rather than "psychology" journals and (b) many of our colleagues continue to move up the academic university or medical school administrative ladders to positions previously reserved for our physician colleagues (deans, vice chairmen of pediatrics departments, directors of research institutes, directors of major clinical programs). As these processes continue, the integration of psychological elements into mainstream medicine will be facilitated. Key advocacy organizations, such as the National Childhood Cancer Foundation, the Alliance for Childhood Cancer, and the Coalition for Cancer Survivorship, view the role of psychologists as pivotal to long-term adjustment. Funding agencies and local foundations have shown an interest in what we have to contribute to the field, and such relationships need to be cultivated even more.
In sum, it appears that the contributions of pediatric psychologists to understanding the neurocognitive and socioemotional aspects of childhood cancer have been quite strong. Many valuable collaborative efforts have emerged, both across institutions in the United States and Canada facilitated by membership in COG and as the result of endeavors unfolding in Europe. Given current fiscal constraints and pragmatic limitations in pursuing this work, now is not the time for grand or sweeping changes in approach. It is the time to continue along the paths we have pursued to date, looking for opportunities to take our work to a higher level, including efforts to gain seamless integration into the mainstream of pediatric oncology practice.
Received May 27, 2004; revision received June 3, 2004; accepted June 8, 2004
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