Under the direction of Dr. Stephen Sands, our psychosocial researchers are contributing to advances in supportive care for children with cancer and their families.
Behavioral science has long played a central role in pediatric oncology clinical service and research. Our early research focused on symptom relief related to side effects of chemotherapy and pain management related to invasive medical procedures. As survival rates improved, our focused shifted to the psychosocial, cognitive and emotional impacts, during and after treatment, on children and their families. We also expanded our research on survivorship, another critical area for psychosocial care.
Working with the Children’s Oncology Group, Dr. Sands and his colleagues created a blueprint for research in behavioral science (Pediatric Blood Cancer in 2013), noting five important goals for the next five years. These include expanding the use of standardized neurocognitive and behavior batteries, increasing assessments of neuro-cognition using technology; pursuing early identification of at-risk children/families; establishing standards for evidence-based psychosocial care; and translating study results into clinical practice. Our pioneering research in this field is described below.
Assessment Tools: Quality of Life and Family Resilience
The CCW team has incorporated interactive, rigorously tested, computerized tools to help children with cancer and their parents rate symptoms and any problems that arise during treatment. This computer-based assessment addresses important aspects of quality of life as well as family resilience and coping. By thoroughly documenting each child’s level of nausea, pain, fatigue, anxiety and sadness, as well as a family’s stress level and emotional challenges, and financial hardships at many points throughout treatment and survivorship, the CCW team can effectively assist families at every stage of the process.
Cognitive Behavioral Therapy for Transplant Patients and their Families
Our psychosocial researchers have recently completed a five-year randomized study investigating the effectiveness of Cognitive Behavioral Therapy (CBT) for parents of children who receive a stem cell or bone marrow transplant. (THIS WILL BE FINISHED IN JANUARY: update then.) Preliminary results show 54 percent of caregivers reporting symptoms of PTSD during and after their child’s transplant. (See Psychological distress and psychiatric diagnoses among primary caregivers of children undergoing hematopoietic stem cell transplant: an examination of prevalence, correlates, and racial/ethnic differences. http://www.ncbi.nlm.nih.gov/pubmed/25246347.
A second study underway will determine whether CBT can help adolescents and young adults adjust to a cancer diagnosis and to successfully manage the transition to survivorship.
Stem Cell Transplantation and Quality of Life
All of our medical protocols include the measurement of quality of life in children undergoing stem cell transplants. We will continue to gather this information for many years to identify patients who may be struggling emotionally, physically, socially, or having difficulties in school. Our goal is to provide targeted support and interventions for these young people and their families, during and after the transplantation.
Possible Cognitive Changes in Children with Brain Tumors and Acute Lymphoblastic Leukemia
Children with brain tumors and acute lymphoblastic leukemia (ALL) are at increased risk for cognitive changes affecting sustained attention-concentration, processing speed, learning and memory. Current studies are underway to investigate how to minimize cognitive problems early in the treatment process, enabling these young patients to keep pace academically and socially. Approaches include medical management (Ritalin, Provigil and other drugs), and computer-based training programs (such as CogMed) to improve cognitive and academic functioning.
Our investigators are also exploring neuropsychological functioning in children who previously received intrathecal chemotherapy and/or cranial irradiation. Specifically, two studies are underway to utilize advanced MRI procedures for brain tumor patients, along with genetic and biochemical information for ALL patients. This will help us better understand changes that these medical treatments may cause in the brain. Hopefully, this will lead to targeted medical and behavioral interventions that can be provided for sub-populations at higher risk for cognitive decline.
Care for the Caregivers
This study by Dr. Sands (Pediatric narrative oncology: interprofessional training to promote empathy, build teams, and prevent burnout.) tested the feasibility and effectiveness of providing narrative training to a mixed group of doctors, nurses, social workers, and child life therapists on a pediatric oncology service. Focus group reports indicated that teamwork and resilience improved in the 6 weeks of the seminar, showing that a narrative training approach aimed at an inter-disciplinary group of healthcare professionals has promise as a means to address some of the most difficult aspects of pediatric oncology care facing clinicians. Additional plans are underway at CCW for the continued use of narrative training to facilitate the communication between patients, families and caregivers. This represents a novel and exciting approach to improving the patient experience at all stages of treatment.