Kathy Ruble, Johns Hopkins nurse practitioner and leukemia survivorship program director, discusses neurocognitive impacts for pediatric patients with cancer. In this video, she provides a brief overview of her recent study and outlines plans for medical practitioners and patients’ families to prepare for this medical complication.
Hello. My name is Kathy ruble. I am a nurse practitioner and director of the survivorship program in pediatric oncology at johns Hopkins. Thank you for taking time to learn about our strategies to improve communication about neurocognitive impacts in pediatric oncology. The vast majority of Children diagnosed with cancer will be cured of their disease. But for up to 50% of these survivors, the disease and treatment will result in neurocognitive deficits. These deficits may develop or persist for years and decades after diagnosis and impact the survivors, academic achievement and quality of life. In our early work in this area we worked with family and provider stakeholders to learn about their experiences with neurocognitive impacts. We had two important findings. First families told us they felt uninformed about neurocognitive impacts and unprepared to advocate for their child in the school environment. In fact some parents told us that dealing with the learning issues and school issues was more difficult than dealing with cancer. From the oncology providers. We learned that most had minimal training about neurocognitive impacts and found it difficult to effectively communicate with families about these impacts. During busy clinical visits to address these findings, we again worked with our stakeholder parents and providers to develop and test strategies to improve knowledge of and communication about neurocognitive impacts of therapy. We began by developing patient educational materials called roadmaps. These roadmaps are designed to provide just in time information to families in an actionable format. At six critical time points starting at diagnosis and extending into long term survivorship. The road maps include information about the impacts of therapy and provide checklist of activities that can be used by the health care provider and in the school to help the parents support them their advocacy. This advocacy may include ensuring their child receives appropriate support in school, such as individual educational program or 504 plan are in the health care arena. Getting referrals for critical supports including neuropsychological assessments for our providers. We developed a one hour continuing medical education program to educate them about neurocognitive deficits conferred by therapy and the educational impacts of these deficits. Further, we provided strategies to effectively communicate with families and identify the potential referrals in the health care system. Finally, we designed a provider driven electronic medical record strategy to deliver roadmaps to families during follow up visits in the outpatient pediatric oncology clinic, we measured the effectiveness of our project in three ways. First we did pre imposed testing of our provider knowledge to evaluate the impact of the continuing medical education program. Second, we evaluated the communication aspects of clinical visits by reviewing patient records and the number of roadmaps delivered to families. And finally, we looked at the impact of our strategies on referral for neuropsychological assessments. Provincial scores for the continuing medical education program were on average 18% higher than the pretest and 8% of medical records reviewed revealed that providers were communicating with families about neurocognitive impacts during clinical visits and providing them with appropriate roadmaps. In addition, we saw a 42% increase in the number of referrals for neuropsychological assessments during this period. Overall a results show that by engaging family and provider stakeholders, you can develop effective strategies to improve communication and address challenging complications associated with the treatment of childhood cancer. Our work has been supported by the patient centered outcome research institute and to learn more about our project. You can read our publication in the journal Pediatric blood and Cancer. To participate in the continuing medical education program, you can access it as a massive online open course on Coursera. Thank you for your attention.