Pediatric Oncology Branch Behvioral Science Core

核心工作人员的科学家进行行为研究，作为合作医疗协议的一部分，以支持NCI的多位主要研究人员，并领导他们自己的研究，如下所列。支持校内pi：评估儿童接受脑肿瘤放射治疗的纵向研究中的神经认知结果（PI: Kathy Warren）2 .儿童和青少年甲状腺髓样癌的纵向和自然史研究评估心理社会和行为结果（PI: Brigitte Widemann）评估Vandetanib在儿童和成人胃肠道间质瘤（GIST）患者中的社会心理和行为结局的II期试验（PI: Brigitte Widemann）4 .确定患者和家长对使用下一代测序（NGS）诊断和管理癌症的态度，并返回结果和偶然发现（PI: Javed Khan）研究儿童、青少年和青年NF1患者的神经心理功能、生活质量和疼痛的自然历史（PI: Brigitte Widemann）评估成人NF1患者MEK抑制剂I期研究的依从性（PI: Brigitte Widemann）设计和领导生活质量和疼痛研究，作为儿童和成人nf18的几个国际联盟临床试验的一部分。研究青少年和成人镰状细胞性贫血接受干细胞移植的神经认知功能（PIs: Courtney Fitzhugh, John Tisdale） 9。全脑放疗对成人脑肿瘤转移患者神经认知功能的影响[j]。在儿童癌症和移植物抗宿主病的多中心治疗研究中设计方法，收集数据，并协助数据分析。核心发起的调查开发和验证新的或适应的方法来评估生活质量、疼痛、GVHD症状和窘迫。评估旨在改善NF1患者应对疼痛和药物依从性的方法13。创建和评估青少年和年轻人的提前护理计划指南开发一种新的身体活动干预，以改善因脑肿瘤接受放射治疗的青少年的认知功能。设计和评估干预措施，以加强干细胞供体的准备制定一项协议，调查nf17患儿父母之间的网络支持小组。开发一种干预措施来支持失去亲人的父母。赞助一项多机构研究，研究单亲父母的特征和定义。评估父母对尸检的了解。减少医学隔离儿科患者社会隔离的评价方法探索在癌症发展过程中如何/何时干预夫妻婚姻/伴侣关系B)临床除了支持CCR研究外，核心还为患者、家属和工作人员提供如下所述的必要临床服务。1. 每周两次患者和家庭教育/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。为住院和门诊工作人员提供健康计划和丧亲支持。癌症、NF1和镰状细胞病患者的持续心理治疗全面的神经心理学评估、附有建议的心理报告，以及持续的随访，以帮助获得适当的教育、心理健康和康复服务。在需要时进行个体化干预，以促进应对医疗程序，减轻疼痛，改善药丸吞咽，并增加对药物方案的依从性。C)专业活动CCR和专业社区内部的合作使核心能够将自己定位为如下所述的国家和国际资源。1. 核心培训项目，为博士后和行为科学研究生提供临床经验、研究机会和教学活动。在国际研究、临床和工作小组，如NF1联盟、神经纤维瘤病和神经鞘瘤病反应评估（REiNS）国际合作组织，以及美国心理肿瘤学会、国际心理肿瘤学会、儿科心理学学会和情境行为科学协会的儿科特殊兴趣小组中担任领导角色。开发资源和治疗工具，免费提供给世界各地的肿瘤中心。在众多专业期刊的编辑委员会任职，并担任临时审稿人。审核儿童肿瘤基金会的资助申请定期在国内和国际科学会议上发表演讲。曾在多家医疗机构和培训学院担任专题演讲嘉宾。在NF患者教育会议上担任特邀演讲嘉宾。在教科书中广泛出版，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10。儿童社会心理标准的发展：与Mattie奇迹基金会合作，由BSC组织，智囊团于2013年2月14日在加利福尼亚州亨廷顿海滩举行的第10届美国社会心理肿瘤学会年度会议上举行，开始制定儿童社会心理护理标准的过程。来自提供儿童心理肿瘤护理的专业领域的代表，包括社会工作、心理学、精神病学、护理，以及来自APOSW、SIOP、IPOS和APOS等组织的代表，以及家长代表都参与了这个项目。主要目标是制定可在所有儿科环境中使用的社会心理护理标准。这个项目正在进行中。11. 手卫生与隔离创新团队：2012年3月组建。主要目标是：1)推广新的手部卫生政策；2)设计实施工作人员、研究参与者和家庭隔离教育的流程。平衡计分卡成员主持了规划2013年第一次[心脏]清洁双手日的委员会，并担任患者和家庭手部卫生教育小组委员会主席。12. 为儿科心理肿瘤学专业人员创建并维护一个网站。http://pediatrics.cancer.gov/psycho-oncology外部资金2012年，沃尔特斯博士获得了儿童脑肿瘤基金会（Childhood Brain Tumor Foundation） 3.5万美元的资助，用于开发一种体育活动干预方法，以改善接受脑肿瘤治疗的儿童的认知晚期效应。2. Drs。Wolters和Martin从神经纤维瘤病治疗加速项目（2013）获得了为期2年（25万美元）的资助，用于开发和验证NF1患者报告的结果。3. 神经行为小组从NHLBI获得资金（15,000美元），以支持他们参与两项研究协议。

The Core staff scientists conduct behavioral research as part of collaborative medical protocols to support multiple principal investigators in the NCI and lead their own research studies as listed below. Support Intramural PIs: 1. Assessing neurocognitive outcomes in a longitudinal study of children undergoing radiation for brain tumors (PI: Kathy Warren) 2. Assessing psychosocial and behavioral outcomes in a longitudinal and natural history study of children and young adults with Medullary Thyroid Carcinoma (PI: Brigitte Widemann) 3. Assessing psychosocial and behavioral outcomes in a Phase II trial of Vandetanib in children and adults with Gastrointestinal Stromal Tumor (GIST) (PI: Brigitte Widemann) 4. Identifying patient and parent attitudes toward the use of next generation sequencing (NGS) for diagnosing and managing cancer and the return of results and incidental findings (PI: Javed Khan) 5. Investigating the natural history of neuropsychological functioning, QOL, and pain in children, adolescents, and young adults with NF1 (PI: Brigitte Widemann) 6. Assessing adherence in a Phase I MEK inhibitor study for adults with NF1 (PI: Brigitte Widemann) 7. Designing and leading the QOL and pain studies as part of several international consortium clinical trials for children and adults with NF1 8. Investigating neurocognitive functions in two protocols of adolescents and adults with sickle cell anemia undergoing stem cell transplant (PIs: Courtney Fitzhugh, John Tisdale) 9. Evaluating the effects of whole-brain radiation on the neurocognitive functioning of adults with brain tumor metastases (PI: Kevin Camphausen) 10. Designing the methodology, collecting data, and assisting with data analyses in multi-center treatment studies of pediatric cancer and graft-vs-host disease. Core-Initiated Investigations 1. Developing and validating new or adapted measures to assess QOL, pain, GVHD symptoms, and distress 2. Evaluating approaches designed to improve coping with pain and medication adherence in patients with NF1 3. Creating and evaluating an advance care planning guide for adolescents and young adults 4. Developing a novel physical activity intervention to improve cognitive function in youth who received radiation for a brain tumor 5. Designing and assessing interventions to enhance stem cell donor preparedness 6. Developing a protocol to investigate an internet support group among parents of children with NF1 7. Developing an intervention to support bereaved parents 8. Sponsoring a multi-institutional study on characterizing and defining lone parenting 9. Assessing what parents want to know about autopsy 10. Evaluating methods of reducing social isolation in medically isolated pediatric patients 11. Exploring how/when to intervene with couples marriages/partnerships during the cancer trajectory B) Clinical In addition to supporting CCR research, the Core provides needed clinical services to patients, families, and staff as noted below. 1. Twice weekly patient and family education/support groups on such topics as adherence, pain control, parenting, mind and body wellness, and coping strategies 2. Wellness program for the inpatient and outpatient staff members and bereavement support 3. Ongoing psychotherapy for patients with cancer, NF1, and sickle cell disease 4. Comprehensive neuropsychological assessments, psychological reports with recommendations, and continued follow-up to help obtain appropriate educational, mental health, and rehabilitation services 5. Individualized interventions are conducted when needed to promote coping with medical procedures, reduce pain, improve pill swallowing, and increase adherence to medication regimens C) Professional Activities Collaboration within the CCR and the professional community has allowed the Core to position itself as a national and international resource as described below. 1. Core training program that offers clinical experiences, research opportunities, and didactic activities for postdoctoral fellows and graduate students in the behavioral sciences 2. Leadership roles in international research, clinical, and working groups such as the NF1 Consortium, Response Evaluation in Neurofibromatosis and Schwannomatosis (REiNS) International Collaboration, and pediatric special interest groups for the American Psycho-oncology Society, the International Psycho-Oncology Society, the Society of Pediatric Psychology, and the Association for Contextual Behavioral Science. 3. Developing resources and therapeutic tools, made available, free of charge, to oncology centers throughout the world 4. Serving on editorial boards and as ad-hoc reviewers for numerous professional journals 5. Reviewing grant applications for the Children's Tumor Foundation 6. Presenting regularly at national and international scientific conferences 7. Serving as invited grand rounds speaker at several medical institutions and training academies 8. Serving as invited speaker at NF patient education conferences 9. Publishing widely in textbooks, and editing reference books for pediatric oncology clinicians on the psychiatric and psychological dimensions of pediatric cancer symptom management 10. Development of Pediatric Psychosocial Standards: In collaboration with The Mattie Miracle Foundation, and organized by the BSC, a think tank was held at the 10th annual American Psychosocial Oncology Society Conference held in Huntington Beach, CA, on February 14, 2013 to begin the process of developing pediatric psychosocial standards of care. Representatives from professional fields of practice that provide pediatric psycho-oncology care including social work, psychology, psychiatry, nursing, with representation from organizations including APOSW, SIOP, IPOS and APOS, as well as parent representatives are involved in this project. The primary goal is to develop standards of psychosocial care that can be utilized in all pediatric settings. This project is ongoing. 11. Hand Hygiene & Isolation Innovation Team: Developed in March 2012. The primary objectives are to 1) Promote new hand hygiene policy and 2) Design a process for implementing staff, research participant, and family isolation education. BSC member chaired the committee in planning I [heart] Clean Hands Day 2013, and is also chairing the Patient and Family Hand Hygiene Education subcommittee. 12. Created and maintain a website for Pediatric Psycho-oncology Professionals. http://pediatrics.cancer.gov/psycho-oncology External Funding 1. Dr. Wolters received a grant ($35,000) from the Childhood Brain Tumor Foundation (2012) to develop a physical activity intervention to improve cognitive late effects in children treated for brain tumors. 2. Drs. Wolters and Martin were awarded a 2-year grant ($250,000) from the Neurofibromatosis Therapeutics Acceleration Program (2013) to develop and validate patient-reported outcomes for individuals with NF1. 3. The Neurobehavioral Group receives funding ($15,000) from the NHLBI to support their involvement in two research protocols.