Psychological Research in Childhood Cancer: The Children’s Oncology Group Perspective
1 University of Miami School of Medicine, and 2 George Washington University School of Medicine and Health Sciences
All correspondence should be sent to Daniel Armstrong, Department of Pediatrics (D-820), P.O. Box 016820, Miami, Florida 33101. E-mail: darmstrong{at}miami.edu.
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Abstract |
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Objective To review benefits and barriers to psychological research on childhood cancer in multidisciplinary, multicenter clinical-trial cooperative groups and identify opportunities for research activities in the coming decade. Methods Review of progress of cooperative-group research in the Children’s Oncology Group and legacy groups and the contribution of psychological research to this effort. Results Multidisciplinary, multicenter clinical-trial cooperative groups offer opportunities for psychological research that may be impossible at local institutions. Benefits include collaboration with other disciplines, access to adequate numbers of participants, shared research infrastructure, and access to longitudinal cohorts. Barriers include cost, standardization and quality control, competition for limited resources, and authorship and publication challenges. Conclusions The inclusion of psychological research as a task of the multidisciplinary cooperative group contributes to a transdisciplinary science focused on cure of childhood cancer followed by optimal quality of survivorship. The focus of this research for the next decade should be on the development of intervention studies that address acute problems, lessen the impact of late effects of treatment, and ultimately prevent these effects by better diagnostic classification and targeted treatment. This focus should ultimately lead to translation of intervention research findings to standard of care in the larger childhood cancer community.
Key words: childhood cancer; cooperative groups; psychological research; transdisciplinary models; intervention research.
Since the early 1980s, cooperative-group childhood cancer clinical-trial research in the United States has included a focus on psychological effects of treatment. In 2000, the four major childhood cancer clinical-trials cooperative groups (Children’s Cancer Group [CCG], Pediatric Oncology Group [POG], National Wilm’s Tumor Study Group, and Intergroup Rhabdomyosarcoma Study Group) merged to become the Children’s Oncology Group (COG) (2000)
. With this merger, a window of opportunity opened to advance the contribution of pediatric behavioral health research to a transdisciplinary knowledge base about childhood cancer (one that merges and synthesizes multidisciplinary perspectives into a common, comprehensive one) and to the lives of children with cancer and their families. Improvement in outcomes from controlled clinical trials and cooperative-group research represents the real "miracle cure" sought for many children with cancer. Clinical trials have advanced our knowledge and improved treatment by systematically evaluating the effectiveness and safety of our clinical interventions. We believe that innovative and sophisticated behavioral research methodology can be integrated with the clinical trials process, adding to accomplishments of improved survival by addressing improved treatment delivery and long-term quality of life. |
Psychosocial Research and Clinical-Trial Groups |
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The primary mission of the childhood cancer clinical-trial cooperative group is to conduct clinical treatment studies that lead to a cure for cancer in children. To accomplish this, the COG has established a network of centers and investigators from across the United States, Canada, and several other countries to develop treatment protocols that are used in a standardized fashion in every participating center. This has permitted rapid study accrual of children with similar diseases who are treated in similar ways. Within this clinical-trial framework, professionals from many disciplines, including psychology, have worked together to reduce the toxicity of treatment, understand late effects of treatment, and develop strategies to improve quality of life of survivors (COG, 2000
) While the primary focus of the COG is to conduct clinical cancer treatment studies, its network of institutions provides multiple opportunities for related research. It is within this framework that psychosocial research has existed for the past 20 years. Some psychosocial research has been fully supported by the clinical-trial cooperative groups. These studies historically involved measurement of psychological outcomes for children treated in specific clinical trials. The majority of these studies have focused on neuropsychological outcomes of children with brain tumors or leukemia. Other psychosocial research has been conducted by individual investigators at single institutions or in collaboration with investigators from a limited group of other institutions. Sometimes these studies occur outside the identified structure of the cooperative group, and sometimes they involve collaborations of a select group of institutions within the cooperative group. However, because most treatment of childhood cancer occurs through clinical-trial protocols at institutions that are part of the cooperative-group network, much of the infrastructure that has provided the patients, standardized treatment, and maintenance of cohorts for most psychosocial research of the past 20 years has been affiliated, formally or informally, with the clinical-trial cooperative groups. Clinical oncology treatment outcomes of clinical trials have influenced psychosocial questions; and psychosocial research findings, both within and outside the cooperative group, have influenced how new clinical trials are designed and conducted and how supportive care within trials is provided. While credit for a particular study may be assigned to COG or to an independent investigator, there is an important synergy between the clinical-trial cooperative group and the many important psychosocial research investigations that have been and are being conducted by investigators using the COG network and infrastructure, either completely or in part. The anticipated outcome of this synergy is better care for children with cancer.
The purpose of the Psychology Discipline Committee of the COG is to promote psychosocial research consistent with the mission of the COG. This includes developing psychological questions as part of COG clinical-trial protocols and supporting the development of independent psychosocial research projects that are carried out within the COG. Some of these studies may involve every participating institution, and others may involve a limited subset of institutions. In addition, the Psychology Discipline Committee provides a mechanism for psychologists from across the United States and Canada, from large and small institutions, to develop research networks, interact with investigators from other disciplines, design and conduct studies, and present their findings. These studies may be substantial research projects supported by extramural grants, or they may be small pilot studies examining feasibility or evaluating promising innovative approaches to care. The ultimate goal of the Psychology Discipline Committee is to encourage and support important research—both formally within COG and informally using the COG network infrastructure—that contributes to the COG mission of cure and optimal quality of life for children with cancer.
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Historical Perspectives |
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The primary focus of psychological research within the childhood cancer cooperative groups over the past 25 years has been on neurocognitive consequences of treatment. A series of studies conducted primarily by independent investigators working with populations of children at a few selected institutions found significant intellectual impairment as a result of cranial radiation for brain tumors or acute leukemia (for a review, see Armstrong & Mulhern, 1999
). For a number of years, this literature described a known consequence but had little effect on treatment delivery, since the outcome for most children prior to the mid-1980s was death. Fortunately, new approaches to chemotherapy; precise neuroimaging of tumors, leading to improved surgical approaches; and refined radiation therapy techniques all resulted in overall childhood cancer survival reaching nearly 70% by the early 1990s (American Cancer Society, 2002). As more children survived, the scope of work began to include quality of life as a major outcome of a successful clinical trial. New clinical trials were designed to sustain or improve survival but at the same time reduce toxicity.
Some of these trials were substantially influenced by psychological research findings. POG studies in the 1980s used chemotherapy to delay cranial radiation therapy (CRT) in very young children with brain tumors, with a substantial reduction in developmental toxicity (Duffner et al., 1993). Because of significant endocrine and learning late effects associated with craniospinal radiation used as prophylactic treatment of the central nervous system (CNS) for acute lymphoblastic leukemia (ALL), POG initiated a series of studies using triple intrathecal chemotherapy (chemotherapy injected into the spinal fluid) instead of CRT, once again with no loss of success in treating the cancer, but with notable reductions in neurodevelopmental toxicity. A small group of investigators at POG institutions, using patients from a POG clinical trial, found that despite these advances, intrathecal and systemic chemotherapy continued to produce neurodevelopmental toxicity for some children with ALL (Brown et al., 1998), and this has resulted in careful monitoring of late effects in more recent ALL clinical trials. Other POG, and CCG, clinical trials included outcomes of psychological and neurologic components of clinical trials for children treated for medulloblastoma (Mulhern et al., 1998), infants with leukemia (Kaleita et al., 1999), and higher doses of specific chemotherapy in ALL trials (Mahoney et al., 1998). These have all reciprocally influenced the science and focus of treatment of children with cancer.
Notably missing in cooperative-group clinical trials has been psychological research on outcomes other than neurocognitive disabilities. Many individual investigators have contributed to knowledge that has lessened the aversiveness of treatment associated with painful procedures (Powers, 1999), and approaches to measurement of quality of life have been refined and evaluated (e.g., Eiser, Vance, Horne, Glaser, & Galvin, 2003). Longitudinal studies of coping in children with ALL (Kupst et al., 1995) and sociometric approaches to assessment of social functioning have expanded our knowledge of the psychosocial consequences of childhood cancer (Vannatta, Gartstein, Short, & Noll, 1998), not always pointing to unavoidable negative outcomes. None of this important research has taken place within the major cooperative-group context. Fortunately, findings of the Childhood Cancer Survivorship Study are beginning to be published (e.g., Nagarajan et al., 2003), filling a gaping hole that has not been directly addressed by the major clinical-trial cooperative groups.
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Cooperative-Group Psychological Research: Benefits and Barriers |
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Benefits
Participation in a cooperative group offers a number of benefits not available at individual institutional settings. These include, but are not limited to:
- Access to large numbers of children with similar diseases treated in similar ways. Most behavioral studies conducted at individual institutions are substantially underpowered and include children with a variety of types of cancer, all treated with different combinations of surgery, chemotherapy, and/or radiation. Outcomes in children treated for 6 weeks with three medications, none associated with toxicity to the CNS, are likely to be very different from those in children treated with neurosurgery followed by radiation therapy and CNS-targeted chemotherapy for 2 years (Armstrong & Mulhern, 1999). Unfortunately, much of the psychological literature on childhood cancer is affected by this limitation.
- Opportunities to examine psychological outcomes within the framework of a transdisciplinary context (Armstrong & Drotar, 2000). Large clinical trials offer tremendous access to biologic, genetic, and imaging data that may contribute to an enhanced understanding of psychological outcomes and may lead to associations that ultimately improve treatment effectiveness or reduce toxicity and improve quality of life.
- Access to a clinical research system that permits prospective enrollment and tracking of participants over many years. Behavioral medicine intervention research has had a significant and positive effect on pain and symptom management during acute cancer treatment (Powers, 1999). However, clinical-trial research has resulted in survival rates greater than 80% for many types of childhood cancer (American Cancer Society, 2002), leading to an emerging emphasis on the late effects of disease and treatment experienced by long-term survivors (e.g., Zebrack et al., 2002). While cross-sectional descriptive studies of these late effects can be conducted, an understanding of the mechanisms that lead to these late effects is essential if alterations in treatment to reduce or prevent toxicity are to occur. These mechanisms can be identified only by using prospective, longitudinal research designs. Maintaining parallel, independent cohorts for oncology clinical trials and psychological studies is both inefficient and costly, and attrition becomes a threat to the integrity of both types of research.
- Opportunities to contribute to the research effort by investigators with innovative ideas who are employed at small institutions with small participant populations. Without the cooperative group, only investigators who are fortunate enough to be employed at the handful of institutions with large numbers of children with cancer can obtain the support (institutional, bio-informatic, and extramural funding) to conduct meaningful research. The cooperative group allows investigators at smaller institutions to develop fresh ideas and innovative approaches that may contribute substantially to both oncologic and psychosocial treatment, generally enriching the total scope of scholarship related to childhood cancer. It also permits fellows and junior investigators to gain access to senior, successful mentors who might not be available at home institutions.
- Access to a sophisticated system of data capture, management, and analysis. Statistical centers are considered core facilities for cooperative groups and offer psychological investigators opportunities for complex analyses not generally available at the individual-investigator or institutional level.
Barriers
Despite these advantages, psychological research in the cooperative-group clinical-trial setting is not without its difficulties. These involve, but are not limited to:
- Cost. Clinical trials cooperative groups, even large ones like COG, are traditionally underfunded, and a substantial portion of the cost of the clinical-trial research is borne by health insurance coverage, foundation and philanthropic support, institutional largesse, and investigator commitment. Fortunately, many of the procedures and medications involved in oncologic treatment of childhood cancer are covered by health insurance, permitting lifesaving research to advance. This has not been the case for psychological studies. Psychological testing has traditionally been considered a function of the schools and has thus not been covered by many insurance programs. Likewise, clinical intervention has been inconsistently covered by health insurance, and then only under a mental health carve-out and with copayments that make it difficult for parents who may be already significantly burdened by medical and nonmedical costs of care. This cost and reimbursement issue has generally resulted in poor compliance for the psychological component of most cooperative-group clinical trials over the past 30 years.
- Prioritization of studies and resources. Given the restricted resources of the cooperative group, psychological studies must compete with oncologic studies for participant enrollment, data and statistical resources, and group support for investigator time. This places a limitation on which psychological research concepts are developed into active studies. However, it also sets a standard for design, methodologic rigor, and relevance that ensures the value of the approved psychological studies and enhances the stature of psychological research within the broader pediatric oncology scientific community.
- Standardization and quality of data across multiple centers. There are nearly 250 institutions across North America, Europe, Australia, and New Zealand that enroll children in COG clinical trials. Not all of these institutions have identified, dedicated pediatric psychologists available, and not all of the available psychologists have the expertise, training, and equipment to collect psychological data and administer intervention protocols in a standardized and replicable manner. Two strategies have emerged to deal with this problem. First, psychological protocols have been developed that use commonly available measures and acquire a limited data set. While this increases the accrual of participants and capture of data, the sophistication of the research questions may be limited by the measurement capacity of the network. Second, limited-institution studies (e.g., five or six participating institutions) involving committed investigators have focused on a subset of a clinical trial using more advanced methodology. This approach yields more rapid results, better study compliance, and overall better data and study integrity, but it may be limited by a participant selection bias.
- Authorship and productivity. Participation in cooperative-group clinical-trial research involves compromise, sharing of authorship, and limitations on the timing of publication of psychological study findings until oncology treatment endpoints are reached (Armstrong & Drotar, 2000).
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Priorities for Psychological Research |
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The relevance of research focusing on psychological aspects of childhood cancer was evident in clinical practice by 2003. Investigations by pediatric psychologists in the 1980s in the area of pain and coping with invasive procedures have led to changes in the way that children are prepared and supported throughout the cancer treatment process today. Professional organizations that deal with pain management (American Academy of Pediatrics and American Pain Society, 2001
) have moved this early research into the realm of policy and practice. Likewise, dissemination of the findings of 20 years of research on late effects of CRT and chemotherapy for children with ALL or tumors of the CNS has increased physician and parent awareness of the need for neurodevelopmental evaluation and tracking as part of standard of care (Armstrong & Mulhern, 1999), as well as development of treatment of and preventative measures for these late effects (National Cancer Policy Board, 2003). It is imperative that the questions addressed in future psychosocial studies of childhood cancer have the same level of relevance and translation to policy and widespread clinical practice. In general, the psychological aspects of childhood cancer provide numerous opportunities that advance our knowledge and understanding of psychological processes in humans, including stress and coping, brain development, contributions of family and health systems to children’s development, and psychological adaptation to trauma. An argument can be made that all of these priorities are applicable to psychosocial research conducted within the cooperative-group clinical-trial context. Available resources and the mission of the clinical-trial group may limit the scope of research in this setting. There are, however, three major areas of psychosocial research that are needed within the cooperative-group clinical-trial context, and these are defined as priorities because of their direct application to our understanding of how to prevent early psychological consequences of cancer treatment, improve cancer treatment delivery, and treat late psychological, social, and family effects of cancer treatment. These priorities are (1) neurodevelopmental outcomes (late effects) that result from different cancer treatment approaches, (2) social and behavioral factors that influence optimal treatment and social and behavioral outcomes associated with different cancer treatment approaches, and (3) interventions that prevent or alleviate adverse psychosocial experiences or consequences of different cancer treatment approaches. All of these are directly relevant to the mission of successfully treating childhood cancer and sustaining quality of life of survivors. Some of these priorities can be addressed at single institutions by independent investigators, but most require collaboration among investigators at multiple institutions. These types of investigations are challenging, and investigators may encounter barriers and frustrations, but perseverance and creativity may lead to eliminations of these barriers, along with advancement of methodology and scientific knowledge.
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Areas of Focus |
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Neurocognitive Studies
Despite the advances in our understanding of the effects of various treatments on learning and cognitive function, research on the neurodevelopmental late effects of various types of cancer and treatment modalities remains important. Current late-effects models associate cognitive deficits with specific types of treatment, age of the child at diagnosis and treatment, the type and intensity of treatment, and the interval between current assessment and age at diagnosis (Armstrong & Mulhern, 1999
). Understanding the specific effects of different treatments is an essential step in the development of interventions that lessen or prevent these late effects. For instance, several limited-institution intervention studies are being conducted by investigators at COG institutions (e.g., Butler & Copeland, 2002; Thompson et al., 2001) to evaluate the effectiveness of specific treatments for neurocognitive and learning late effects. These studies advance knowledge and open opportunities for larger, disease-specific trials in the future. Likewise, new medical approaches to treatment of childhood cancer are emerging (e.g., anti-angiogenesis drugs, biologic response modifiers, gene therapies), about whose short- or long-term cognitive effects nothing is known. Inclusion of neurocognitive outcomes as part of clinical trials is the only way that the safety and efficacy data from these trials can be fully evaluated. Transdisciplinary studies involving psychological function, genetic risk, biologic markers and mechanisms, and structural and physiologic development detected with advanced imaging techniques represent the next major scientific step in understanding the mechanisms leading to cognitive late effects. Not all children with a specific disease treated in the same manner experience the same outcome. Genetic-risk and protective factors, concurrent genetic learning-problem risks, environmental factors, family dysfunction, and unique physiologic and biologic responses to cancer therapies are likely contributors to cognitive, emotional, and behavioral outcomes. Models of complex interaction may ultimately identify specific risk factors for both cancer survivorship and consequences of survivorship, leading to better, more targeted, and less toxic cancer treatment. The cooperative-group mechanism provides the opportunity for further model development and analysis of diverse data, as well as for scientists from different disciplines to identify and communicate common observations.
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Social and Behavioral Descriptive Studies |
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Most of the research focusing on factors other than cognitive effects of treatment has been conducted outside of the cooperative-group context because of cost, low priority within the cooperative group, and difficulty with quality control across multiple sites. Simple self- or parent-report measures that could be included in cooperative-group studies have been criticized for lack of validity, specificity, and reliability when administered outside the context of a normative sample (Noll, Gerhardt, & Vannatta, 2003
). Some investigators, working independently of the cooperative group, have overcome these barriers and made significant contributions to models of coping (e.g., Sorgen & Manne, 2002), social functioning (e.g., Vannatta et al., 1998), responses to trauma (e.g., Stuber, Kazak, Meeske, & Barakat, 1998), and impact on family members (e.g., Hoekstra-Weebers, Jaspers, Kamps, & Klip, 2001). The challenge remains to develop this type of relevant research within the clinical-trial context. This is not a challenge to be taken lightly, but neither is it one that should be avoided. Research involving direct observations in natural environments, collection of information from peers and teachers, and experimental manipulation in either laboratory or natural settings is demanding and expensive. It is unlikely that this kind of research can be conducted as part of a large multicenter clinical-trial group like COG, since the primary mission of COG is to treat and cure childhood cancer, and the cost and quality control concerns of advanced social and behavioral research exceed the resources available for this mission. However, smaller, limited-institution collaborations within the cooperative group may permit these types of studies to be conducted. This model exists in other areas of the COG, particularly where genetic or biologic studies are conducted at specialized laboratories using data acquired from selected institutions. Core support of the clinical-trial cooperative group (e.g., biostatistical, network, systematic data collection) combined with extramural support for specialized studies conducted in a limited group of institutions may be successfully applied to social and behavioral studies in childhood cancer, particularly when social and behavioral concerns involve children with specific diagnoses treated on specific protocols.
Within the COG, the most pressing and likely area for social and behavioral research is assessment of health-related quality of life (HRQOL). Since the mid-1980s, HRQOL outcomes have been considered an important area for clinical-trial cooperative groups and are an identified priority area for COG (2000). Progress has been limited by measurement problems, including unavailability of reliable and valid measures of child HRQOL, lack of developmental sensitivity of available measures, disagreement about what constitutes HRQOL, lack of agreement among reporting sources (e.g., parents, children, medical professionals), and lack of sensitivity of measures to detect meaningful differences among children receiving different types of treatment (Quittner, Davis, & Modi, 2003). A number of independent investigators have conducted research on HRQOL assessment in pediatric cancer (e.g., Armstrong et al., 1999; Varni, Burwinkle, Katz, Meeske, & Dickinson, 2002), but the results of these investigations have not yet led to meaningful HRQOL outcomes for cooperative-group clinical trials. The COG needs a meaningful HRQOL assessment strategy that will produce outcome data that can influence treatment protocol development in the way that neurocognitive outcome studies have influenced CNS-tumor and ALL treatment.
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Intervention Research |
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Results of previous intervention studies in pediatric psychology have contributed to improvements in the way that children with cancer are treated, primarily in the areas of management of pain and distress associated with invasive procedures and symptom management. Today, the challenge for psychological research on childhood cancer is threefold: to (a) improve intervention that reduces or prevents psychological toxicity of the disease and/or its treatment, (b) prevent cancer associated with specific behaviors in children already treated for cancer (e.g., skin cancer associated with childhood sun exposure, lung cancer associated with adolescent tobacco use), and (c) identify interventions that promote self-advocacy, participation in regular screening for late effects (e.g., second malignancies, cardiotoxicity), and prevention, early intervention, and/or effective treatment of long-term adult and family psychological and social consequences of cancer treatment during childhood (National Cancer Policy Board, 2003
). While it is beyond the scope of the cooperative group to undertake population-based prevention studies, such studies with children who have already been treated for cancer are within the purview of the cooperative group, since these children already carry an elevated risk for cancer and other late health effects related to these health behaviors. Intervention studies focused on improving long-term psychosocial outcome are consistent with the overall COG mission. Again, the barriers noted in previous sections of this paper have resulted in most of these studies occurring outside the cooperative-group structure. Unfortunately, the possible scope of impact of intervention studies has been limited by the amount of time needed to accrue adequate study samples of children with similar concerns for intervention studies.
The Psychology Discipline Committee of the COG has developed a new strategy to address this issue within the cooperative-group context. Starting with a rapid pilot intervention study, issues of cost, feasibility, and potential effectiveness are evaluated in intensive studies involving 10–12 participants recruited from three or four separate institutions. This model allows rapid recruitment, limited research burden for any single investigator, and opportunities for investigators with theoretically good but unproven ideas to test their models. Rapid pilot intervention studies are designed to be completed within 1 year. If the data from these studies support further investigation, a second type of study, the limited-institution study, is then initiated. This type of study involves participation by several institutions capable of enrolling enough children to adequately power an intervention trial, an approach that has already been successful outside of the formal cooperative group in several areas, including treatment of cognitive late effects using stimulant medications (Thompson et al., 2001) and maternal problem-solving training (Sahler et al., 2002). Preliminary data from the rapid intervention pilot study are used to support applications for extramural support for the limited-institution study. The limited-institution study is simultaneously reviewed by COG for designation as an approved COG protocol, with accompanying biostatistical and data management support, and its investigators are provided access to clinical and biologic data that may be crucial to the interpretation of intervention study results. Collaboration with investigators from other disciplines (e.g., nursing, pediatric oncology, diagnostic imaging) is a central feature of the limited-institution study. In general, the limited-institution study is typically the most methodologically rigorous in the cooperative group, since it must determine the optimal intervention components and implementation procedures.
Once the effectiveness and feasibility of a psychological intervention has been demonstrated in the limited-institution study, the groupwide trial becomes possible, involving all 230+ COG institutions. At this level, modifications in the intervention model are necessary to address the practical implementation of the psychological protocol across multiple settings with varying levels of professional skill and training. The groupwide study usually requires a sacrifice in specificity and control over implementation but has as its primary focus evaluation of widespread implementation of the intervention in general pediatric oncology settings. In this respect, the groupwide study can be viewed as translation research, moving the intervention from the experimental clinical setting of the limited-institution trial to the community setting of standard care.
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Conclusions |
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Childhood cancer and pediatric psychology have been intimately linked since the time pediatric psychology first defined itself as a field. The collaborations between pediatric oncologists and psychologists have led to positive changes in the ways that children with cancer are treated and their symptoms managed, and behavioral science has been improved by expansion of the context and environment in which research is conducted. Despite the many difficulties associated with conducting psychological research in a multicenter, cooperative-group clinical-trial context, this mechanism offers many potentially rewarding opportunities to expand the collaboration to further benefit children with cancer and their families. The major challenge for pediatric psychologists is to overcome these barriers, design intervention studies that demonstrate benefits to the cancer treatment process and clinical outcomes, and then use the cooperative-group mechanism to translate the effective interventions so that they are widely available and become part of the standard of care in every institution for every child and family that might benefit.
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Acknowledgments |
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Preparation of this article was supported in part by grant funding from the National Cancer Institute for the Children’s Oncology Group (U10-CA30969), the Maternal and Child Health Bureau for the Leadership Education in Neurodevelopmental Disabilities program (MCJ-129147–05–05), and the Administration on Developmental Disabilities for the University Center of Excellence in Developmental Disabilities Education, Research, and Service (90DD0408).
Received June 11, 2003; revision received February 9, 2004; accepted June 8, 2004
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