While pediatric oncologists know medulloblastoma as a common cancerous brain tumor in children and know its paths for treatment, parents often have no roadmap for managing a cancer treatment’s potential, long-term side effects on children’s abilities or for transitioning back to school.
Years after navigating the challenges of the school system and treatment for her daughter, Gunshore became a parent partner on a Eugene Washington PCORI Engagement Award. The project explored post-treatment educational challenges and developed tools for parents like Gunshore to address their children’s educational needs.
Initially, Anna Marie had surgery and chemotherapy. Unfortunately, the cancer spread to her spine, so she required radiation, chemotherapy, and a stem-cell transplant. She completed treatment at three years old.
“She survived but lost her ability to walk, talk, and do everything,” Gunshore says.
Gunshore, using her knowledge, enrolled her daughter in a special education preschool class and obtained every service possible, including adaptive physical education.
Navigating a New Normal
Gunshore’s daughter is one of approximately 429,000 survivors of childhood and adolescent cancer in the United States. While the five-year survival rate for all childhood cancer is 84 percent, treatment effects on the brain can be long lasting. These include deficits in working memory, executive function, attention, and processing speed, all of which affect learning.
Anna Marie experienced significant cognitive impacts from her radiation. Radiation affects current and long-term production of healthy cells—a potential lifelong problem. As a result, it can also interrupt communication between brain regions, so children may possess or gain skills, but at a slower rate and become less efficient at applying them.
Gunshore knew Anna Marie needed an individualized education program (IEP) to learn. The program provides specialized services after experts evaluate children’s deficits.
In pediatric oncology so much research focuses on new drugs, so a place like PCORI that thinks about patient outcomes, especially with school which has previously been ignored, is so important. We need that parent-patient experience to inform us of what the needs are and how to best address them.
“I was a special educator for 16 years then, so I had attended hundreds of IEP meetings. I knew the terminology, the people, and their roles. But my first meeting for Anna Marie, where each person read their report of where she was functioning, was overwhelming,” Gunshore says. “I think about the parents who don’t know the terminology in these reports or the special education process.”
Despite the number of childhood cancer survivors, there is an inadequate number of school programs and school liaisons at pediatric hospitals nationwide. In fact, roles of school liaisons—official or unofficial—are not well defined and to date there’s little data available to determine the extent of the problem. Liaisons guide parents in hospital-school transitions, communicating with schools to establish services. Gunshore became her own liaison.
“When Anna Marie was turning five, the resident who had been working with her all this time said, ‘There is something called an IEP that you could get in school,’” Gunshore says. “If I had waited for him, Anna Marie would have lost two years of early intervention services.”
It’s why she stayed active in helping other families.
Educating the Educators
Gunshore became a founding member of Johns Hopkin’s Children’s Center Pediatric Advisory Council, later joining the PCORI project.
Project co-leaders, Lisa Jacobson, PhD, Juliana Paré-Blagoev, EdD, and Kathy Ruble, PhD, MS, combined experience in pediatric neuropsychology, developmental psychology and educational neuroscience, and pediatric cancer care and survivorship, respectively, to improve hospital-school transitions. To begin, they formed three stakeholder groups:
- Parents of childhood cancer survivors and young adult survivors
- Local public-school personnel and oncology-focused foundation personnel
- Healthcare practitioners
“A unique component of the project was including actual school staff in the conversation,” says Jacobson of the Kennedy Krieger Institute. “Kathy and I see pediatric cancer weekly, but in the real world it is very rare. Teachers, administrators, and even school psychologists may not understand a treatment’s impact on a child’s ability to learn and manage in a school setting.”
Two workshops provided opportunities to change this. One offered information on neurocognitive deficits; while another gathered school personnel, parents, and other stakeholders to learn about hospital-school partnerships and cancer-survivor school topics based on stakeholders’ requests.
At a series of meetings, stakeholders also generated ideas and reviewed existing patient and family resources.
Charting a New Course
Parents of survivors spearheaded this work, joining other stakeholders to review web-based educational, clinical, and neuropsychological resources to determine whether they were understandable and actionable.
Project co-leads interviewed parents about school reentry challenges, and the knowledge and communication gaps they found.
After, the team surveyed parents nationally and found that 48 percent of parents did not recall receiving information about potential neurocognitive deficits or educationally relevant deficits. Those who did typically received it at diagnosis, considered the least helpful time.
This will be transformative for families. The roadmap gives parents information and control, empowering them to advocate for their child.
Parents reported needing conversations throughout treatment, especially at school reentry, as 51 percent reported not feeling adequately prepared.
“There isn’t a good infrastructure or an obvious person playing the role of helping parents transition from their child’s cancer treatment through survivorship,” says Paré-Blagoev of Johns Hopkins School of Education.
Survey results and parent feedback led to creating the Parent Roadmap: Kids with Cancer Still Need School. It includes healthcare- and school-related checklists for diagnosis through survivorship, defines terminology, and offers links to highly rated materials.
“This will be transformative for families,” Gunshore says. “The roadmap gives parents information and control, empowering them to advocate for their child.”
Impact at the National and Clinical Level
Karen DeMairo, The Leukemia & Lymphoma Society’s Vice President of Education, Support, and Integration, reviewed materials as a stakeholder. The society’s Trish Greene Back to School Program for Children with Cancer offers informational booklets for parents and school personnel.
The project has been a driving force in making changes to society materials. This includes replacing booklets with workbooks, per stakeholders’ recommendation on needing note-taking space. DeMairo’s team is also specializing workbooks for parents, teachers, and adult and parent caregivers.
“Reading the roadmap, I realized how much we focus on patients and the need to continue our efforts to address the needs of parents, siblings, and teachers,” DeMairo says.
Another stakeholder, Stacy Cooper, MD, has seen school issues addressed reactively versus proactively. She believes roadmaps will make providers proactive.
“There are many things that can be set up ahead of time, so school won’t become a frustrating place for kids. Without these roadmaps, we are waiting for a problem to happen,” Cooper says. “In pediatric oncology so much research focuses on new drugs, so a place like PCORI that thinks about patient outcomes, especially with school which has previously been ignored, is so important. We need that parent-patient experience to inform us of what the needs are and how to best address them.”
Making a Difference
The project team plans to take the roadmap to the next level with a new PCORI Engagement Award focused on dissemination and implementation. It will support incorporating the roadmap into electronic medical records, alerting providers at key points during treatment to talk about school-related topics and provide roadmaps.
The team is also disseminating results through professional journals and will create a provider roadmap.
Gunshore’s efforts enabled Anna Marie to receive the services she needed throughout her education, one mainly spent in mainstream school with nondisabled peers. Their presence, Gunshore says, enhanced her daughter’s vocabulary and taught her social cues.
This project shined a unique light on the problem and really gives us those pearls of wisdom we need to move forward to be able to support families appropriately in the future.
Today, Anna Marie is at the University of Cincinnati’s Transition and Access Program for students with intellectual disabilities. She’s fearless, Gunshore says, as her daughter joined the running club and completed her first 5K race.
“Our therapy’s impact on school affects children’s quality of life for the rest of their lives,” says Ruble, Director of Life Clinic and Leukemia Survivorship program at Johns Hopkins. “This project shined a unique light on the problem and really gives us those pearls of wisdom we need to move forward to be able to support families appropriately in the future.”
Posted: May 20, 2019