Written by Clifton Thornton
If it takes a village to raise a child, then raising a child who has cancer takes a small city.
Vast challenges arise when a child leaves the hospital setting. Dealing with multiple, long-term effects while transitioning back into a school environment—a virtual school environment during a global pandemic—and it might feel like a state-wide effort.
Treatment for childhood cancer has made impressive progress: nearly 90 percent of children will survive a cancer diagnosis and there are currently more than 500,000 childhood cancer survivors living in the United States. But the side effects of cancer treatment can be long-standing and many children, adolescents, and young adults who have been treated for cancer develop neurocognitive deficits that make education challenging, which ultimately impacts their quality of life, future occupational performance, and ability to live independently as adults. The physical symptoms and effects of cancer therapy are well-documented, but the neurocognitive impacts haven’t received as much attention in research. The SUCCESS (Supporting and Understanding Childhood Cancer: Education, Strategies, and Services) lab at Johns Hopkins is trying to change that.
The physical effects of cancer therapy are well-documented, but the neurocognitive deficits many survivors develop haven’t received as much attention in research.
SUCCESS works with families of children with cancer and pediatric oncology treatment teams to find better ways to help survivors thrive in school. It is funded by two PCORI engagement awards and the Lab’s interdisciplinary team is comprised of nurses, nurse practitioners, physicians, neuropsychologists, special education teachers, and researchers.
So what are some of the neurocognitive effects that survivors may experience after cancer therapy?
“The most common neurocognitive effects of cancer therapy include difficulties with sustaining attention, processing speed, and executive functions such as working memory and cognitive flexibility – all skills critical to succeeding in school.” says Dr. Lisa Jacobson, Director of Research and Neuropsychologist at the Kennedy Krieger Institute and Associate Professor at the Johns Hopkins School of Medicine. “Not all patients and families feel well-informed about these potential concerns, so new challenges can be an unpleasant surprise after a return to schooling.”
Dr. Kathy Ruble, Director of the Pediatric Oncology Survivorship Clinic and Assistant Professor at the Johns Hopkins School of Medicine and School of Nursing, continues: “We’ve found that parents do not have the information or support they need to advocate for their child in school and that oncology providers are unsure of their role in meeting these needs.”
So SUCCESS has taken up the responsibility of improving the transition back to school, as well as supporting performance in school for children who have been treated for cancer—which takes a lot of resources. “We use a stakeholder informed approach to identify gaps in support, and devise strategies for families and providers to fill these gaps,” says Dr. Ruble. To date, SUCCESS has conducted a number of investigations, including parent and stakeholder group studies and national surveys of pediatric oncology families and clinicians.
What resources is SUCCESS developing to support childhood cancer survivors’ education?
SUCCESS partnered with the Kennedy Krieger Institute and put together a set of resources to help children thrive in school after cancer therapy. Now the team is evaluating the resources’ efficacy and identifying how they best fit into clinical practice, and developing accredited continuing medical education (CME) materials to educate pediatric oncology clinicians about the neurocognitive impacts of therapies, family preferences for communicating these effects, and how to support pediatric patients’ transition back to school. SUCCESS is also working to integrate return-to-school roadmaps, resources for school, and communication tools into hospital electronic medical records (EMR) systems, and partnering with the Hospital Education and Liaison Program (HELP) at Kennedy Krieger to assist families with the transition.
Amid COVID-19, many children transitioned from in-person to virtual schooling, unmasking an entirely new set of challenges.
Children receiving cancer therapy often participate in Home & Hospital (or Homebound) Programs, which deliver part-time, modified instruction to children who cannot attend school for medical reasons. Our patients rely on accommodations—like speech therapy, one-on-one instruction, or test taking support— that cannot be delivered easily in a virtual format. Now that nearly every student is attending virtual school, schools’ existing special education resources are stretched very thin.
It’s now harder for oncology providers to enroll their patients into Home & Hospital programs (claims are rejected because school is already virtual). Schools must understand that our patients’ require accommodations beyond physical distance, and that logging into an eight hour school day via video chat just isn’t an accessible education. And as distance education becomes more mainstream, we must make sure accommodations are consistently available for our patients to thrive in this environment. This work also sets the foundation for other exciting endeavors, like helping childhood cancer survivors succeed in the university setting, making recommendations for online education programs, and ensuring that survivors can thrive in all aspects of their lives.
Educational attainment is a fundamental social determinant of health that impacts quality of life and overall health status. “I think we owe these amazing individuals every opportunity to succeed in school and we hope what we learn will help children at Johns Hopkins and beyond,” says Dr. Ruble. The interdisciplinary team at the SUCCESS lab is working hard to ensure that the needs of children with cancer are respected long after treatment ends.
Resources from the SUCCESS Lab
- Barriers to Schooling in Survivorship: The role of Neuropsychological Assessment
- Tools of the trade to address schooling related communication needs after childhood cancer: A mini-review with consideration of health disparity concerns
- Schooling in Survivorship: Understanding caregiver challenges when survivors return to school
- Educating Childhood Cancer Survivors: A qualitative analysis of parents mobilizing social and cultural capital
- Pediatric oncology provider perspectives and practices: Supporting patients and families in schooling after cancer diagnosis
- Beyond risk-based stratification: impacts of processing speed and executive function on adaptive skills in adolescent and young adult cancer survivors
- Parent perspectives on oncology team communication regarding neurocognitive impacts of cancer therapy and school reentry
- Assessment of online resources for returning to school during and after treatment of childhood cancer
- Returning to school: Parent preferences, perceptions, and preparedness
ABOUT THE AUTHOR: CLIFTON THORNTON
Clifton Thornton, PhD(c), MSN, RN, CPNP, is a pediatric hematology & oncology nurse practitioner, PhD candidate, and researcher. His clinical practice focuses on the care of children, adolescents, and young adults with cancers and blood disorders and his research focuses on improving the understanding of the experience of young persons with cancer as they undergo treatment including the biological and social factors that influence side effects of therapy. His work aims to improve the prevention and treatment of toxicities from therapy, improve the quality of life of children, adolescents, and young adults with cancer, and reduce therapy interruptions due to toxicities.
THE SUCCESS LAB TEAM
Clifton Thornton
Sydney Henegan, BS, MSN (Entry Into Nursing) and Research Honors Program student, Johns Hopkins School of Nursing
Kathy Ruble, PhD, MSN, RN, CPNP, Assistant Professor of Oncology and Director, Pediatric Oncology Survivorship Clinic, Johns Hopkins Medicine
Katrina Cork, MD, Pediatric Hematology/Oncology Fellow, Johns Hopkins Medicine/NIH
Lisa Jacobson, PhD, NCSP, ABPP, Director of Research, Neuropsychology; Co-Director Center for Innovation and Leadership in Special Education, Kennedy Krieger Institute & Associate Professor, Psychiatry & Behavioral Science, Johns Hopkins Medicine
Lisa Carey, EdD, Assistant Director, Center for Innovation and Leadership in Special Education, Kennedy Krieger Institute
Kimberly Milla, MS, SUCCESS Program Manager, Kennedy Krieger Institute
Juliana Paré-Blagoev, EdD, Assistant professor, Johns Hopkins School of Education
