Pediatric Oncology Branch Behavioral Science Core

核心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的多名主要研究者，并领导他们自己的研究，如下所列。支持校内PI：- 在对接受脑肿瘤放射治疗的儿童进行的纵向研究中评估神经认知结果（PI：Kathy Warren）-评估两种新POB治疗方案的神经认知结局（CD 19 CAR和CD 22 CAR）用于复发性B细胞恶性肿瘤儿童（PI：Trey Lee，Terry Fry）-评估儿童和年轻成人非神经母细胞瘤GD 2+实体瘤POB治疗方案的神经认知结局（PI：Crystal Mackall）-在一项IL-13对流增强输送试验中评估患有进行性小儿弥漫性浸润性脑干胶质瘤和幕上高级别胶质瘤的儿童的QOL结局-在一项针对甲状腺髓样癌（MTC）儿童和年轻成人的纵向和自然史研究中评估心理社会和行为结局（PI：Brigitte Widemann）-评估Vandetanib在患有胃肠道间质瘤（GIST）的儿童和成人中的II期试验的心理社会和行为结局（PI：Brigitte Widemann）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以及结果和偶然发现的回报（PI：Javed Khan）-研究儿童、青少年和年轻成人NF 1患者的神经心理功能、QOL和疼痛的自然史（PI：Brigitte Widemann）-在NF 1成人患者中评估MEK抑制剂I期研究的依从性（PI：Brigitte Widemann）-设计和领导QOL和疼痛研究，作为几个国际联盟临床试验的一部分，并为NF 1儿童和成人制定POB治疗方案，对接受干细胞移植的青少年和成人镰状细胞性贫血患者的三种方案的神经认知功能调查（PI：Courtney Fitzhugh，John Tisdale）-评估全脑放射对脑肿瘤转移成人神经认知功能的影响（PI：Kevin Camphausen）-评估将KSADS-PL诊断访谈扩展到筛选和评估年轻人的可行性，年龄18-25岁患有癌症的精神疾病（PI：Joyce Chung）-在儿科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措施，以评估QOL，疼痛，GVHD症状，和痛苦-评估旨在改善NF 1患者疼痛和药物依从性的方法-评估青少年和年轻人的高级护理计划指南-进行一项随机对照试验，以评估一种新的身体活动干预措施，以改善接受脑部放射治疗的青少年的认知迟发效应肿瘤-评估干预措施，以提高干细胞供体的准备-进行一项协议，以调查一个互联网支持小组的父母与NF 1-制定干预措施，以支持失去亲人的父母-赞助一项多机构研究的特点和定义单亲-评估父母想知道什么尸检-评估方法，减少社会孤立的医学隔离儿科患者-探索如何/何时干预癌症轨迹期间的夫妻婚姻/伴侣关系-评估儿童截肢患者的截肢准备方法。- 评估预先护理规划指南《说出我的选择》的可行性和实用性，与AYA -评估PROMIS措施在儿科癌症护理人员中的可行性和实用性-制定一项方案，以评估参与靶向Ras/MAPK通路的MEK抑制剂药物研究的儿童和青少年的认知结果-接受FDA的药物开发工具资格认证计划并与之合作，以修改和验证当前患者-报道了用于NF 1临床试验的疼痛强度和疼痛干扰的结果测量。临床除了支持CCR研究，该中心为患者、家属和工作人员提供所需的临床服务，如下所述。- 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，身心健康和应对策略-住院和门诊工作人员的健康计划和丧亲支持-癌症患者的持续心理治疗，NF 1和镰状细胞病-全面的神经心理学评估，心理报告和建议，并继续随访，以帮助获得适当的教育，心理健康和康复服务-在需要时进行个性化干预，以促进应对医疗程序，减轻疼痛，改善药丸吞咽，并增加对药物治疗方案的依从性-在患者或同事死亡后，应要求向整个临床中心的工作人员提供丧亲报告

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: -Assessing neurocognitive outcomes in a longitudinal study of children undergoing radiation for brain tumors (PI: Kathy Warren) -Assessing neurocognitive outcomes in two new POB treatment protocols (CD19 CAR and CD22 CAR) for children with recurrent B-cell malignancies (PIs: Trey Lee, Terry Fry) -Assessing neurocognitive outcomes in a POB treatment protocol for children and young adults with non-neuroblastoma GD2+ solid tumors (PI: Crystal Mackall) -Assessing the QOL outcomes of children with progressive pediatric diffuse infiltrating brainstem gliomas and supratentorial high-grade gliomas in a trial of convection-enhanced delivery of IL-13 -Assessing psychosocial and behavioral outcomes in a longitudinal and natural history study of children and young adults with Medullary Thyroid Carcinoma (MTC) (PI: Brigitte Widemann) -Assessing psychosocial and behavioral outcomes in a Phase II trial of Vandetanib in children and adults with Gastrointestinal Stromal Tumor (GIST) (PI: Brigitte Widemann) 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) -Investigating the natural history of neuropsychological functioning, QOL, and pain in children, adolescents, and young adults with NF1 (PI: Brigitte Widemann) -Assessing adherence in a Phase I MEK inhibitor study for adults with NF1 (PI: Brigitte Widemann) -Designing and leading the QOL and pain studies as part of several international consortium clinical trials and POB treatment protocols for children and adults with NF1 -Investigating neurocognitive functions in three protocols of adolescents and adults with sickle cell anemia undergoing stem cell transplant (PIs: Courtney Fitzhugh, John Tisdale) -Evaluating the effects of whole-brain radiation on the neurocognitive functioning of adults with brain tumor metastases (PI: Kevin Camphausen) -Evaluating the feasibility of extending the KSADS-PL diagnostic interview to screen and evaluate young adults, ages 18-25 with cancer for psychiatric disorders (PI: Joyce Chung) -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: -Developing and validating new or adapted measures to assess QOL, pain, GVHD symptoms, and distress -Evaluating approaches designed to improve coping with pain and medication adherence in patients with NF1 -Evaluating an advance care planning guide for adolescents and young adults -Conducting a randomized controlled trial to evaluate a novel physical activity intervention to improve cognitive late effects in youth who received radiation for a brain tumor -Assessing interventions to enhance stem cell donor preparedness -Conducting a protocol to investigate an internet support group among parents of children with NF1 -Developing an intervention to support bereaved parents -Sponsoring a multi-institutional study on characterizing and defining lone parenting -Assessing what parents want to know about autopsy -Evaluating methods of reducing social isolation in medically isolated pediatric patients -Exploring how/when to intervene with couples marriages/partnerships during the cancer trajectory -Evaluating methods of preparation for amputation in individuals who underwent an amputation as a child. -Evaluating the feasibility and utility of an advance care planning guide, Voicing My Choices, with AYA -Assessing the feasibility and utility of PROMIS measures in pediatric cancer caregivers -Developing a protocol to assess the cognitive outcomes of children and adolescents enrolled in studies of MEK inhibitor drugs which targetthe Ras/MAPK pathway -Accepted into and working with the FDA's Drug Development Tool Qualification Program to modify and validate current patient-reported outcome measures of pain intensity and pain interference for use in NF1 clinical trials Clinical In addition to supporting CCR research, the Core provides needed clinical services to patients, families, and staff as noted below. -Twice weekly patient and family education/support groups on such topics as adherence, pain control, parenting, mind and body wellness, and coping strategies -Wellness program for the inpatient and outpatient staff members and bereavement support -Ongoing psychotherapy for patients with cancer, NF1, and sickle cell disease -Comprehensive neuropsychological assessments, psychological reports with recommendations, and continued follow-up to help obtain appropriate educational, mental health, and rehabilitation services -Individualized interventions are conducted when needed to promote coping with medical procedures, reduce pain, improve pill swallowing, and increase adherence to medication regimens -Bereavement debriefings are provided as requested to staff throughout the Clinical Center in response to a patient or colleague death