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 neurotoxicity using computerized neurocognitive testing and a neurologic symptom checklist we developed in a POB treatment protocol (CD22 CAR) for children with recurrent B-cell malignancies (PI: Terry Fry), 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 (PI: Kathy Warren), 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), Assessing psychosocial and quality of life outcomes in a Phase II trial of DNA methyl transferase inhibitor, SGI-110, in children and adults wild type GIST, pheochromocytoma and paraganglioma associated with succinate dehydrogenase deficiency and HLRCC-associated kidney cancer (PI: John Glod), Assessing psychosocial factors, stressors and needs of children and adults with Gastrointestinal Stromal Tumor (GIST) that attend the NIH GIST clinic (PI: Fernanda Arnaldez), Assessing quality of life outcomes in a Phase II trial of the Mitogen Activated Protein Kinase Kinase (MEK1/2) inhibitor Selumetinib (AZD6244 hydrogen sulfate) in Patients with Neurofibromatosis Type 1 (NF1) related Gastrointestinal Stomal Tumors (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: Rosie Kaplan), Investigating the natural history of neuropsychological functioning, QOL, and pain in children, adolescents, and young adults with NF1 (PI: Brigitte Widemann), Assessing medication adherence in a Phase I MEK inhibitor study for adults with NF1 (PI: Brigitte Widemann), Assessing patient-reported outcomes of pain, physical function, and quality of life in a registration phase II clinical trial of selumetinib in children with NF1 and inoperable plexiform neurofibromas, Assessing patient-reported outcomes assessing pain, physical function, and quality of life in a phase II clinical trial of selumetinib in adults with NF1 and inoperable plexiform neurofibromas, Assessing medication adherence in a phase II clinical trial of selumetinib in children with NF1 and inoperable plexiform neurofibromas, 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, pain, and quality of life 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), Examining the effects of a six-week yoga-based stress reduction intervention on perceived stress in caregivers of allogeneic HSCT patients (PI: Margaret Bevans) , Assessing the feasibility and utility of PROMIS measures in pediatric cancer caregivers (PI: Margaret Bevans), Assessing psychosocial characteristics of children in a natural history study of clinical factors in children with chronic GVHD (PI: Steven Pavletic) -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 -Developing a communication tool for physicians on discussing 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 -Conducting a protocol to assess the cognitive outcomes of children and adolescents enrolled in studies of MEK inhibitor drugs which target the 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 through a two-phase research protocol -Determining what patient reported outcomes pediatric oncology providers find most useful and their preferences for obtaining results-Evaluating practice guidelines for the assessment and surveillance follow-up of pediatric hematopoetic stem cell donors-Determining integration of pediatric palliative care concepts into existing pediatric oncology programs -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 -Created and maintain a website for pediatric psycho-oncology professionals http://pediatrics.cancer.gov/psycho-oncology
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