Although the contributions made by the CCSS to the study of psychosocial outcomes of childhood cancer survivors have been significant, the ultimate goal for better understanding of these outcomes must be to develop interventions to improve them. An expressed goal of psychosocial oncology research and intervention is to facilitate patients' and family members' adjustment to the short- and long-term consequences of treatment, recovery, and survivorship.33
Studies of psychological outcomes in the CCSS cohort indicate that childhood cancer confers some increased risk of problems in psychosocial adaptation, even many years after completion of therapy. Although most individual survivors can expect to achieve positive psychosocial adjustment and life satisfaction in adulthood, many survivors will experience limitations in social and psychological well-being. Moreover, many survivors, even those apparently doing quite well on distress scales, may continue to have concerns related to their treatment—including concerns about their physical health, body image, or self-concept, access to life and health insurance, jobs and career options, and continued care from a skilled and attentive medical system.34–36
By reporting on the long-term psychosocial outcomes of childhood cancer survivors, reports from the CCSS can identify the significant areas of difficulty these survivors experience and can identify the groups of vulnerable survivors who are at greatest risk for poor outcomes.
Findings from the CCSS indicate that fatigue and psychological distress, including symptoms of depression and anxiety, are significant issues for a subgroup of adult survivors of childhood cancers, particularly among those who are women, are unemployed, have low income levels, and are struggling with late or delayed effects of cancer therapy. This finding is similar to that reported in studies of survivors of adult cancers, in which many adults are psychologically healthy but in which younger adults and those more heavily treated, such as those in a bone marrow transplant group, show the most pronounced psychological effects.37–39
These findings in both adult and childhood cancer survivors suggest that a subgroup of long-term survivors may benefit from psychological assessments and targeted interventions as part of long-term follow-up care. The caveat in the QOL and psychological outcome findings from the CCSS is the issue of clinical versus statistical significance. Clearly, studies that involve a large cohort may be overpowered to provide statistical significance in many domains. In the CCSS, siblings were used as a closer-matched control group than just normative data for comparisons. Although there are some areas in which siblings might indicate more problems than the general population, such survivor-sibling comparisons would make significant differences clinically meaningful and conservative. In this series of studies, normative data were also used for comparisons, when available, and risk estimates were made by using clinically significant cutoff scores, such as T ≥ 63 for the subscales of the BSI-18. The issue of clinical versus statistical significance in the assessment of QOL is discussed by Cella et al.40
Ideally, late psychological effects in survivors would be prevented best during childhood cancer treatment. Clinic-based family interventions have shown efficacy in the promotion of psychological adaptation and reduction of distress in pediatric cancer patients.41
Continued research of these interventions will lead to better understanding of their potential to affect long-term adjustment. In addition to interventions aimed at the prevention of long-term adjustment problems, research also needs to focus on addressing these concerns when they develop in childhood cancer survivors. Psychological interventions to help survivors of adult cancers cope with anxiety and depression have been developed,42–44
and adaptation of these programs for survivors of childhood cancers may be a promising strategy to pursue. Interventions to address fatigue in childhood cancer survivors may similarly benefit from research on adult survivors.45,46
Such interventions will need to address the potential contribution of medical factors (eg, endocrine, metabolic, cardiac, neurologic). Adaptation of existing exercise and other lifestyle interventions developed to reduce fatigue in other cancer populations should be a priority for research in the childhood cancer survivor population.
Survivors with medical morbidities and poor overall health were identified in several CCSS studies as having increased risk for poor psychosocial adaptation. These results indicate that intervention for these survivors will need to target several aspects of cancer therapy and aftercare. Pediatric oncology research continues to focus on decreasing toxicity of therapies, and these findings have the potential to succeed at primary prevention for these medical late-effects of treatment.47
Secondary and tertiary prevention of the psychosocial consequences of these morbidities may be realized by interventions that help survivors optimize their medical care for their conditions as well as interventions aimed at helping them cope more effectively with the burden of illness. Several programs for patient education, decision support, and positive coping have been developed for other aspects of cancer care48,49
and other diseases,50,51
and research should now focus on adapting these approaches to survivors of childhood cancer who face similar medical problems—including pain and limitations in daily living, such as limited mobility.
Results from the CCSS clearly identify brain tumor survivors as a particularly vulnerable group, whose members report more psychological distress, fatigue, cognitive problems, and diminished life satisfaction. Neuropsychological problems seen in these survivors, and, to a lesser extent in survivors of other diseases who also received cranial radiation, have been previously characterized,52,53
but CCSS findings demonstrate the ongoing difficulties faced by these survivors and the associated risk for psychological problems. Targets of intervention for these survivors should include ongoing efforts to reduce toxicities of therapy as well as interventions aimed at helping these survivors receive the specialized cognitive, educational, and vocational services they require. Several clinical programs that address these survivor needs have been developed,54,55
but more research is needed to evaluate their effectiveness. Intervention addressed at public policy–makers to ensure the availability of special education programs for patients who miss school or who have cognitive and emotional disabilities should be encouraged. Policies that ensure nondiscrimination in survivors' access to advanced educational opportunities and nondiscrimination in employment should be encouraged also. Cognitive remediation trials aimed at helping survivors improve their cognitive abilities have reported some positive results,56
and future research in this area is particularly promising. In several of the CCSS reports, limited educational achievement and lower income were associated with a variety of psychosocial problems, which highlights the need to make interventions that promote cognitive functioning and educational achievement priority areas.
In addition to identifying the priority areas for psychosocial intervention research with childhood cancer survivors, the CCSS itself can be used for development and evaluation of interventions for these survivors. Because of its large and representative cohort of survivors in whom treatment exposures and post-treatment outcomes have already been documented, the CCSS represents a valuable resource to support this work. Emmons et al57
successfully used the CCSS cohort to develop a clinically effective telephone intervention for smoking cessation, and other intervention trials are expected to be developed. Health interventions increasingly use telephone, internet, DVD, or other methods to make interventions deliverable to large groups of geographically dispersed participants,58,59
and these methods can be developed and tested quite efficiently by using the CCSS. Telephone interventions have already been developed for adult cancer survivors to reduce psychological distress and fatigue43–45
and to promote a variety of health behaviors,60,61
and these should be used as models for developing interventions for childhood cancer survivors. With more of these intervention studies in place, the CCSS will expand the current evidence-based interventions available for childhood cancer survivors and will demonstrate how they can be extended to the broader community and to a more diverse population of survivors. Ultimately, this research must answer the questions of where best to offer which supportive care interventions, and to whom, to definitively support implementation of and reimbursement for these intervention services.