Pediatric Oncology Branch Behavioral Science Core

Division Of Basic Sciences - Nci

Investigators

Linked publications & trials

Abstract

Recommendations for patient-reported outcome measures assessing quality of life and social skills endpoints in NF clinical trials (2021). Impact of COVID-19 on the impact of COVID-19 on mental health and access to health care in adults with neurofibromatosis from an anonymous online survey (2022) Publication of the impact of COVID-19 on the moral distress of pediatric palliative care providers and social workers. First national outcome data on the use of Voicing My CHOiCES, an advance care planning guide for adolescents and young adult developed in the POB. Co-edited and published a Special Issue in the Journal Children on Psychosocial Considerations for Children and Adolescents Living with a Rare Disease. Developed an app, The Clinical Center Treasure Tour, preparing children coming to the NIH Clinical Center Support Intramural PIs: Assessing neurotoxicity using computerized neurocognitive testing and a neurologic symptom checklist that we developed in a phase I/II study of CD33 CAR T-cell infusions in pediatric and adolescent and young adult patients with relapsed/refractory acute myeloid leukemia (PI: Nirali Shah) Assessing neurotoxicity using computerized neurocognitive testing and a neurologic symptom checklist that we developed in a POB phase I CD22 CAR treatment protocol for children with recurrent B-cell malignancies including CNS disease (PI:Shah) Assessing neurotoxicity using computerized neurocognitive testing and a neurologic symptom checklist that we developed and revised based on the CD22 CAR results in the POB phase I CD19/22 CAR treatment protocol for children with recurrent B-cell malignancies (PI:Shah) Assessing neurotoxicity using computerized neurocognitive testing, neurologic symptom checklist, and patient-reported outcomes on a CD22 CAR trial in adults with Hairy Cell Leukemia (PI:Krietman) Developing a limited-site pilot study to investigate the cognitive aftereffects (subacute and long-term) of neurotoxicity in children and young adults with relapsed/refractory hematologic malignancies who receive CAR T-cell therapy including remote assessments (PI:Shalabi) Assessing patient reported outcomes in children undergoing CAR T therapy and their caregiver through self-report and qualitative interviews (PI: Haneen Shalabi; LAI: Lori Wiener) Collecting subject-reported symptom data prior to infusion of CD33 CAR T-cell infusions and weekly in the month following (PI:Shah) Assessing psychosocial and behavioral outcomes in a longitudinal and natural history study of children and young adults with Medullary Thyroid Carcinoma (MTC) (PI:Widemann) Assessing psychosocial and behavioral outcomes in a longitudinal and natural history study of children and adults with RUNX1 FPD (PI:Liu) Assessing psychosocial and behavioral outcomes in longitudinal and natural history study of children and adults with Adrenal Cortical Cancer (PI:Del Rivero) Assessing psychosocial factors, stressors and needs of children and adults with Gastrointestinal Stromal Tumor (GIST) that attend the NIH GIST clinic (PI:Glod) Assessing psychosocial factors, stressors and needs of children and adults with Medullary Thyroid Carcinoma (MTC) that attend the NIH MTC clinic (PI:Glod) Investigating the natural history of neuropsychological functioning, QOL, and pain in children, adolescents, and young adults with NF1 (PI:Widemann) Analyzing the long-term patient-reported outcome (PRO) data 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, which contributed to FDA approval of selumetib (koselugo) in April 2020 (PI:Widemann) Assessing patient-reported outcomes of 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 (PI:Widemann) Administering the patient-reported outcomes measures for a pilot study of the MEK1/2 inhibitor selumetinib (AZD6244 Hydrogen Sulfate) for adults with neurofibromatosis type 1 and cutaneous neurofibromas (PI:Gross) Assessing patient-reported outcomes measures for a phase I/II study to evaluate the Cyclin-Dependent Kinase (CDK)4/6 Inhibitor Abemaciclib for Neurofibromatosis Type I (NF1) Related Atypical Neurofibromas (PI:Gross) Planning the patient-reported outcomes and neurocognitive assessment for a new natural history study of individuals with NF1 and high risk tumors (PI:Gross) Investigating neurocognitive functions, pain, and quality of life in several protocols of children, adolescents, and adults with sickle cell anemia undergoing stem cell transplant (PIs: Courtney Fitzhugh, John Tisdale) 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) Evaluating the effects of whole-brain radiation on the neurocognitive functioning of adults with brain tumor metastases (PI: Kevin Camphausen) Assessing psychosocial characteristics of children in a natural history study of clinical factors in children with chronic GVHD (PI: Steven Pavletic) Assessing a core set of patient-reported outcomes to assess children, adolescents, and adults with rare solid tumors as part of the POB natural history rare tumor initiative (PI: Jaydira Del Rivero) Conducting two cognitive test batteries (low and high functioning) for a natural history study to examine the cognitive, social, and emotional development of children and young adults with RASopathies (PI: Doug Stewart) Conducted qualitative interviews on order of transplant in siblings undergoing transplant for DOCK8 Deficiency (PI: Nirali Shah) Assessing symptom burden and quality of life in patients undergoing related and unrelated donor Hematopoietic Stem Cell Transplant for Dock 8 Deficiency (PI: Corina Gonzalez) Conducting qualitative interviews pre and 1 year post Hematopoietic Stem Cell Transplant for Dock 8 Deficiency (PI: Corina Gonzalez) Conducting evaluations to investigate the feasibility of mobile sensor technologies using an Apple iPhone and Apple Watch to assess general symptomology (e.g., fatigue, pain) and cognitive function (e.g., cognitive flexibility, reaction time) of cancer patients (PI: James Gulley) Designing and implementing a behavioral health intervention and patient-reported outcomes in a protocol assessing the effect of diet and exercise on the gut microbiome and response to immune checkpoint inhibitor therapy in patients with melanoma (PI: James Gulley) Assessing quality of life in a natural history protocol for Myelodysplastic Syndromes (PI: Kathy L McGraw). Assessing patient report outcomes and quality of life in a study of Imatinib to increase RUNX1 activity in patients with germline RUNX1 deficiency (PI: Lea Cunningham) Core-Initiated Investigations Establishing and disseminating recommendations on working with patients with chronic pain during the COVID-19 pandemic Assessing the impact of COVID-19 on mental health and access to health care in adults with neurofibromatosis from an anonymous online survey Developed a study to assess the impact of COVID-19 on pediatric palliative care providers and programs within the US and a 2nd study to assess the impact globally Evaluating the psychosocial support needs of parents before and after the death of their child Assessing the barriers and facilitat *TRUNCATED*