Behavioral Science Core

随着医学治疗的进步和预期寿命的延长，人们越来越关注癌症儿童的生活质量（QOL）。关注儿童和家庭的心理和社会情感需求，可以改善适应和生活质量，增加药物依从性，提高医疗团队的信任度，提高对护理的满意度，减少工作人员的压力。确定癌症及其治疗对认知和行为功能的影响有助于评估减少神经毒性的新药物和递送机制。这些知识还有助于规划干预措施，以改善学习成绩、参与日常活动、同伴和家庭关系以及情绪调整，从而减少神经行为缺陷，改善生活质量。行为科学核心（Core）成立于2009年10月，旨在通过以下方式支持CCR的研究工作：1)进行系统研究，以确定癌症和其他慢性疾病对参与CCR临床试验的患者的社会心理和神经心理影响；2)提供和评估临床干预和教育服务，以帮助患者及其家属做好准备，应对癌症和其他相关医疗条件的影响，同时在NCI和NIH的几个合作研究所进行研究。核心团队由3名科研人员（2名心理学博士和1名社工博士）、2名心理测量学硕士、1名心理学博士后研究生（校内研究训练奖）、1名兼职心理学家协助数据分析，以及数名志愿心理学研究生和本科生组成。核心开发协作协议的行为研究目标和方法；进行全面的纵向神经心理学评估、生活质量评估、深度定性访谈等评估，收集行为数据；进行统计分析；并为包括POB， ROB， HAMB， ETIB和VB在内的NCI多位主要研究者以及NIAID， NHLBI， NHGRI， NIMH和临床中心生物伦理学部门的NIH IRP研究者领导的研究准备手稿。核心工作人员的科学家也进行自己的研究，包括开发新的措施来评估生活质量、疼痛和痛苦；评估旨在改善药物依从性的方法；为青少年和青壮年制定和评估预先护理规划指南；设计和评估干预措施，以加强干细胞供体的准备工作，并为患有NF1的青少年和成人以及失去亲人的父母提供支持；并赞助了一项多机构研究，研究单亲父母的特征和定义。核心科学家还设计并协调了生活质量评估，作为几项国际联合1型神经纤维瘤病（NF1）儿童临床试验的一部分。他们还积极参与了许多儿童癌症、移植物抗宿主病和NF1的多中心治疗研究。除了支持CCR研究外，核心还为患者、家属和工作人员提供所需的临床服务。此类临床项目的例子包括每周两次的患者和家庭教育/支持小组，主题包括坚持，疼痛控制，养育子女，身心健康和应对策略，以及白班和夜班工作人员的健康计划和丧亲支持。对于儿童和成人患者，提供全面的神经心理学评估、附有建议的心理报告和持续的随访，以帮助他们获得适当的教育、心理健康和康复服务。在诊所，个性化干预是在需要时进行的，以促进应对医疗程序，减轻疼痛，改善药丸吞咽，并增加对药物治疗方案的依从性。Core还有一个培训项目，为行为科学领域的博士后和研究生提供临床经验、研究机会和教学活动。CCR和专业社区内部的合作使核心能够将自己定位为国家和国际资源。核心工作人员科学家在国际研究小组中担任领导角色，如NF1联盟和美国心理肿瘤学会和国际心理肿瘤学会的儿科特殊兴趣小组。儿科肿瘤科开发的资源和治疗工具免费提供给世界各地的肿瘤中心。为了推进他们的教育使命，核心研究人员在许多专业期刊和放射治疗肿瘤学组担任编辑委员会和临时审稿人，定期出席国际科学会议，在同行评审的科学期刊和教科书上广泛发表文章，并为儿科肿瘤临床医生编辑关于儿科癌症症状管理的精神和心理层面的参考书。

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.