Behavioral Science Core

随着医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会带来更好的适应和生活质量，更好的服药依从性，更大的医疗队信任，更高的护理满意度，以及更少的工作人员压力。确定癌症及其治疗对认知和行为功能的影响有助于评估为减少神经毒性而开发的新制剂和交付机制，并促进干预措施，以改善学校表现、同伴和家庭关系、情绪调整和日常生活活动，从而减少神经行为缺陷和改善生活质量。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病对参与CCR临床试验的患者的心理社会和神经心理影响；2)提供和评估临床干预和教育服务，以帮助患者及其家人在NCI和几个合作的NIH研究所进行研究时，为癌症和其他相关疾病的影响做好准备和应对。中心由三名科学家(两名博士心理学家和一名博士社会工作者)、两名硕士级别的心理测量学家、一名博士后心理学研究生(校内研究培训奖)、一名协助数据分析的兼职心理学家以及几名志愿的研究生和本科生组成。该中心为协作方案开发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、深度定性访谈和其他评估以收集行为数据；执行统计分析；并为NCI的多个主要研究人员(包括POB、ROB、HAMB、ETIB和VB)领导的研究准备手稿，以及与NIAID、NHLBI、NHGRI、NIMH和临床中心生物伦理部的合作研究人员。核心工作人员科学家也进行他们自己的研究，包括开发新的措施来评估生活质量、疼痛和痛苦；评估旨在改善服药依从性的方法；创建和评估青少年和年轻人的高级护理计划指南；设计和评估干预措施以加强干细胞捐赠者的准备；以及赞助一项关于单亲育儿的特征和定义的多机构研究。核心科学家还设计并协调了生活质量评估，作为几个国际联盟针对1型神经纤维瘤病(NF1)儿童的临床试验的一部分。他们还积极参与了许多儿科癌症、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，该中心还为患者、家属和工作人员提供所需的临床服务。这类临床项目的例子包括每周两次的患者家庭教育/支持小组，主题包括坚持、疼痛控制、育儿、身心健康和应对策略，以及针对白班和夜班工作人员的健康计划。对于儿童和成人患者，提供全面的神经心理评估、带有建议的心理报告和持续跟踪，以帮助他们获得适当的教育、心理健康和康复服务。在临床上，在需要时进行个体化干预，以促进应对医疗程序，减少疼痛，学习吞下药片，并提高对药物治疗方案的依从性。CORE也有一个培训计划，为行为科学的博士后研究员和研究生提供临床经验、研究机会和教学活动。CCR和专业界之间的合作使核心成为国家和国际资源。核心员工科学家在国际研究组织中担任领导职务，如NF1联盟以及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。在儿科肿瘤科内开发的资源免费提供给世界各地的肿瘤学中心。为了履行教育使命，核心调查员担任众多专业期刊的编辑委员会成员和临时审查员，定期出席国际科学会议，在同行评议的科学期刊和教科书上广泛发表文章，最近编辑了一本供儿科肿瘤临床医生参考的关于儿科癌症症状管理的精神病学和心理学方面的参考书。

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, and facilitates interventions to improve school performance, peer and family relationships, emotional adjustment, and daily living activities, thus leading to reduction in 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 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 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. 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, learn pill swallowing, and improve 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 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, present regularly at international scientific conferences, publish widely in peer-reviewed scientific journals and textbooks, and recently edited a reference book for pediatric oncology clinicians on the psychiatric and psychological dimensions of pediatric cancer symptom management.