Children's Oncology Group's 2013 blueprint for research: Behavioral science

For children and adolescents diagnosed with cancer, advancesin treatment have required intensive treatment regimens that havethe potential to challenge and disrupt the psychosocial develop-ment of the child and the family system. Family caregivers con-sistently report high levels of distress, particularly around theinitial diagnosis [1]. This distress may interfere with their abilityto fully understand and comply with the best-available therapies.While the majority of children and families adapt and cope well,and some even demonstrate psychological growth, vulnerablesub-groups remain. Notably, children with tumors of the centralnervous system (CNS); children with diseases that require thera-pies with a potential adverse impact on the CNS; and childrenwith pre-existing individual or familial risk factors are at risk forshort- and long-term psychosocial problems [2].Life Course Theory [3] suggests that each child/family bringsa complex array of factors [i.e., socioeconomic status (SES), race,ethnicity, family dynamics, personal attributes, trauma history,etc.] that are relevant to the trajectory of adaptation to a child’sdiagnosis with cancer from diagnosis to survivorship or bereave-ment. These pre-existing social and psychological factors play apowerful role in the psychosocial outcomes for children and theirfamilies. Additionally, there are undoubtedly times during thecourse of treatment that are particularly challenging (i.e., unantic-ipated treatment complications, relapse, and transitional points).For a number of decades, there have been ongoing efforts withinthe international community of researchers and clinicians in pe-diatric oncology to identify and understand issues related to psy-chosocial quality of life (QoL) and functioning of patients andtheir families. Many of these investigators have been workingwithin the structure of the Children’s Oncology Group (COG)and the Behavioral Science Committee (BSC).Based on previous accomplishments, the research agenda pro-posed here includes [1] utilization of psychometrically robustmeasures within the conceptual framework of Life Course Theoryto enhance understanding of psychosocial/behavioral risk andprotective factors related to disease and treatment, and functionaloutcomes [2]; to empirically evaluate and promote interventionsthat can be translated to routine clinical care; and [3] to establishevidence-based practice and guidelines to optimize the behavioralhealth and psychosocial QoL of children with cancer and theirfamilies.Medical advances have led to the successful development ofnew and more effective treatments for pediatric cancer. Withchanges in medical cancer treatment protocols, particularly thosethat intentionally aim to reduce toxicity, there exists a need toassess the costs and benefits on morbidities. COG includes multi-ple disciplines invested in establishing optimal treatments andprograms of supportive care for children diagnosed with cancerand their families. This organization creates the potential forcutting edge interdisciplinary research collaboration. With thisin mind, in 2006, the COG Psychology Discipline Committeewas renamed the BSC to intentionally broaden interdisciplinarymembership and collaboration, particularly from nursing, social