Children with Cancer and Other Special Needs Deserve Support During Online Learning


Kathy Ruble
Kathy Ruble, Ph.D., M.S.N., R.N., C.R.N.P. Credit: Johns Hopkins Kimmel Cancer Center

Thousands of schools transitioned to online learning in 2020 due to the COVID-19 pandemic, during which time many children with cancer and other chronic health needs, as well as those with special education needs, faced significant challenges to learning online. An opinion paper by Johns Hopkins experts, published Jan. 4 in the journal JAMA Pediatrics, highlights some of the issues faced by families and offers suggestions to move forward.

Children undergoing cancer treatment may have symptoms such as fatigue, pain, motor impairments or vision/hearing loss that make learning more challenging, says co-author Kathy Ruble, Ph.D., M.S.N., R.N., C.R.N.P., director of the pediatric oncology survivorship clinic at the Johns Hopkins Kimmel Cancer Center and an associate professor at the Johns Hopkins University School of Medicine and School of Nursing. Additionally, therapy frequently induces deficits in attention, executive function, processing speed, behavior regulation and overall IQ.

Although clinicians in pediatric oncology or other subspecialties are the ones who spend the most time with families, they’re often the least well-equipped to handle these types of issues, Ruble says.

“If somebody is having difficulty walking, we don’t have any problem sending them to physical therapy,” she says. “But if someone can’t hold their pen, or employ fine motor skills to use the computer, we’re much less likely to pick that up in a clinical visit and send them to occupational therapy. There are many departments within the health care system that can help with disease-acquired or treatment-acquired disabilities that I think we underutilize because we don’t think about it enough.”

Patients and family caregivers should bring up concerns to every clinician they encounter and ask for assistance, she advises. Meanwhile, she says, during examinations clinicians should ask about school performance, look for signs and symptoms that might make learning challenging, and learn what resources are available within their institutions or communities. Pediatric neuropsychology teams, social workers and disease-specific organizations may also be helpful.

In addition, Ruble and her team developed a continuing medical education course to help oncology health care providers navigate the challenges associated with the neurocognitive impacts of therapy. It is available as a Massive Open Online Course (MOOC), free online courses open to anyone, on the Coursera platform Kids with Cancer Still Need School: The Providers Role.

Ruble is co-founder of the SUCCESS (Supporting and Understanding Childhood Cancer: Education, Strategies, and Services) lab at Johns Hopkins, which works with families of children with cancer and pediatric oncology teams to find better ways to help survivors thrive in school. It has received funding through three engagement awards from the Patient-Centered Outcomes Research Institute. For more information, see Childhood Cancer Survivors May Face Neurocognitive Challenges. Johns Hopkins’ SUCCESS Lab Works to Ensure They Receive a Quality Education.