With advances in medical treatments and longer life expectancies comes an increased focus on the quality of life (QOL) of children with cancer. Attention to the psychological and social-emotional needs of the child and family results in better adjustment and QOL, increased medication adherence, greater trust of the medical team, higher satisfaction with care, and less stress on the staff. Identification of the effects of the cancer and its treatment on cognitive and behavioral functioning contributes to the evaluation of new agents and delivery mechanisms developed to reduce neurotoxicity. This knowledge also facilitates planning interventions to improve school performance, participation in daily activities, peer and family relationships, and emotional adjustment, thus leading to fewer neurobehavioral deficits and improved QOL. The Behavioral Sciences Core (Core) was formed in October 2009 to support the research efforts of the CCR by 1) conducting systematic studies to identify the psychosocial and neuropsychological effects of cancer and other chronic illnesses in patients participating in CCR clinical trials;and 2) providing and evaluating clinical interventions and educational services developed to help patients and their families prepare for and cope with the effects of cancer and other related medical conditions while enrolled on research studies at the NCI and several collaborating NIH Institutes. The Core consists of three staff scientists (two PhD psychologists and one PhD social worker), two masters-level psychometricians, one postdoctoral psychology graduate student (Intramural Research Training Award), one part-time psychologist who assists in data analysis, and several volunteer graduate and undergraduate psychology students. The Core develops behavioral research objectives and methodologies for collaborative protocols;conducts comprehensive longitudinal neuropsychological evaluations, QOL assessments, in-depth qualitative interviews, and other assessments to gather behavioral data;performs statistical analyses;and prepares manuscripts for studies led by multiple principal investigators in the NCI including the POB, ROB, HAMB, ETIB and VB, as well as with collaborating NIH IRP investigators in the NIAID, NHLBI, NHGRI, NIMH and Clinical Center Bioethics Department. Core staff scientists also conduct their own research studies, including developing new measures to assess QOL, pain, and distress;evaluating approaches designed to improve medication adherence;creating and evaluating an advance care planning guide for adolescents and young adults;designing and assessing interventions to enhance stem cell donor preparedness and to provide support to adolescents and adults with NF1 as well as bereaved parents;and sponsoring a multi-institutional study on characterizing and defining lone parenting. Core scientists have also designed and are coordinating QOL assessments as part of several international consortium clinical trials for children with neurofibromatosis type 1 (NF1). They are also active participants in a number of multi-center treatment studies of pediatric cancer, graft-vs-host disease, and NF1. In addition to supporting CCR research, the Core provides needed clinical services to patients, families, and staff. Examples of such clinical projects include twice weekly patient and family education/support groups on such topics as adherence, pain control, parenting, mind and body wellness, and coping strategies, as well as a Wellness program for day and evening shift staff members and bereavement support. For both pediatric and adult patients, comprehensive neuropsychological assessments, psychological reports with recommendations, and continued follow-up are provided to help them obtain appropriate educational, mental health, and rehabilitation services. In the clinic, individualized interventions are conducted when needed to promote coping with medical procedures, reduce pain, improve pill swallowing, and increase adherence to medication regimens. The Core also has a training program that offers clinical experiences, research opportunities, and didactic activities for postdoctoral fellows and graduate students in the behavioral sciences. Collaboration within the CCR and the professional community has allowed the Core to position itself as a national and international resource. Core staff scientists serve in leadership roles in international research groups such as the NF1 consortium and pediatric special interest groups for the American Psycho-oncology Society and the International Psycho-Oncology Society. Resources and therapeutic tools developed within the Pediatric Oncology Branch are made available, free of charge, to oncology centers throughout the world. Advancing their educational mission, Core investigators serve on editorial boards and as ad-hoc reviewers for numerous professional journals and the Radiation Therapy Oncology Group, present regularly at international scientific conferences, publish widely in peer-reviewed scientific journals and textbooks, and edits reference books for pediatric oncology clinicians on the psychiatric and psychological dimensions of pediatric cancer symptom management.
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|Wiener, Lori; Battles, Haven; Mamalian, Cynthia et al. (2011) ShopTalk: a pilot study of the feasibility and utility of a therapeutic board game for youth living with cancer. Support Care Cancer 19:1049-54|
|Martin, Staci; Gillespie, Andrea; Wolters, Pamela L et al. (2011) Experiences of families with a child, adolescent, or young adult with neurofibromatosis type 1 and plexiform neurofibroma evaluated for clinical trials participation at the National Cancer Institute. Contemp Clin Trials 32:10-5|