Pediatric cancer and its treatment can confer significant risks for schooling challenges, and parents report feeling unprepared to effectively support their child. Importantly, providers and parents can have very different perceptions regarding when and how the medical team has communicated about those risks. In this module, you'll explore parent perceptions about the challenges of schooling after their child's cancer diagnosis. You'll also consider how misconceptions about parent provider communication may contribute to the schooling related difficulties parents report. Understanding the need, uncovering the misconceptions. It may have occurred to you that talking about the importance of school is not the typical topic discussed in a CME for Pediatric Oncology providers. So why are we talking about this? Of all the things we could possibly be talking about for our families. Why are we interested in this topic? Well, we know that Leukemia and Brain tumor survivors make up more than 50 percent of all childhood cancer survivors. Because both of these diseases require central nervous system directed therapy, they put survivors at increased risk for neurocognitive deficits. In fact, studies have shown that at least 50 percent of leukemia survivors and as many as 90 percent of brain tumor survivors will have long-lasting neurocognitive deficits and these deficits are known to lead to reductions in overall health-related quality of life, reduced educational attainment, increased risks for unemployment, and a greater risk for dependent living as an adult. We hope that we have your attention and will give us the opportunity to convince you that this is a topic you want to learn more about. In 2016, my colleagues and I received an Engagement Award from the Patient-Centered Outcomes Research Institute to do a deep dive look of the experience of patients and families as they navigate the school environment after the diagnosis of cancer. We began by doing interviews with families, reaching out to community stakeholders, and conducting national surveys of parents and physician providers. From the information we gathered, we developed a model to depict these challenges around school after diagnosis. A full description of our analysis and models are available at the reference in the bottom of this slide. Later, we use this information and worked with stakeholders to create a series of road maps to support parents. For the purposes of this CME, We're going to focus on challenges in the domains of communication and knowledge related to schooling after cancer. By the end of this CME, you will know how to improve patient-provider communication and understand how the return to school road maps can support parents. I want to begin at looking at the highlights of what we've learned about parents' perceptions from our interviews and surveys. Again, the full description of our methods and findings are available at the reference on this slide. First, I would like to share this quote from a parent we interviewed. "You know, honestly, I'm glad you reached out for me for this engagement project because I think the educational component was more stressful than dealing with cancer." As an oncology provider for more than two decades, this quote came as quite a surprise. I certainly knew that there were children and families who struggled with neurocognitive impacts of therapy. But it never occurred to me that this was this stressful. In my mind. I thought the return to school was a welcome experience that was in celebration of getting back to familiar childhood experiences. Furthermore, when we asked parents in our national survey, we found that it was not only the children and families who had CNS directed therapy that found the school experience stressful. In fact, statistically, there was no difference between the CNS and non-CNS groups when it came to reporting stress around schooling after diagnosis. This bandage remind us as providers, that is important for us to remember to ask about school stressors with all of our families. Another unexpected finding from our national survey was that nearly half of the parents did not recall receiving information about treatment-related cognitive or school problems. Even more surprising, this number was not better for parents whose childhood had CNS directed therapy. As a Pediatric Oncology provider, we strive to keep families informed of risks and side effects of treatment we prescribe. Whether these are acute toxicities or late effects. The informed consent process is a pillar of good clinical care and ongoing assessments of toxicity is a standard of care in our field. So why do so many families not recall getting this information from us? Some of the clues come from these findings from our next parent and provider surveys. Perhaps our timing is off. Both parents and providers reported that information about neurocognitive and school-related issues is most often shared a diagnosis. From a coalition standpoint, this makes a lot of sense. We're trying to prepare families for what is ahead in treatment and getting their informed consent. Of course, this is when we share this critical information. The only problem is that when we ask parents when during the treatment trajectory, it is helpful to get this information, they told us at diagnosis was the least useful time. We also asked parents about their satisfaction with the amount of information they received at five time points that correspond with treatment and schooling milestones. The time points included diagnosis, when receiving home and hospital teaching, returning to school part-time during treatment, returning to school full time after-treatment and transition to long-term survivorship. Again, less than half of the parents reported they received the information they needed at any of these five time points. As providers, the message here is that we need to review information with parents regularly, and thoroughly at these important milestone periods. The Children's Oncology Group recommends in standards of care exist steadying all children who receive CNS directed therapy, should undergo neuropsychological testing. The oncology provider is typically responsible for introducing the process of evaluating a child for neurocognitive changes. Yet, just over a third of the parents surveyed, reported receiving this information. Again, we were surprised that this number was not different between the CNS and non-CNS treated patients, despite these national recommendations. The neuropsychological assessment goes well beyond identified deficits. It is a critical component of care that introduces the child and family to the professionals that can help them understand your child's needs, and steer them through the complicated maze of getting appropriate support at school. A message here is, we're missing out on an important component of care if we are not getting our families information on neuropsychological testing. For many clinicians, the responsibility falls to you to make referrals for the neuropsychological testing to be done. This is an important duty. In our survey, for those families who reported getting a referral for neuropsychological testing, more than half went on to get the testing completed. This finding leads us to make two recommendations for clinicians. First, make referrals for all at-risk children to get neuropsychological testing. Second, follow-up to make sure the testing is done. Why is it so important that we follow through on getting neuropsychological testing completed? Well, because our parents tell us that having the assessment helps them advocate for their child at school. As you will see in the next section of the CME, an informed parent advocate is a critical component to getting supports children with cancer need to ensure they are successful at school. Additionally, I want to share that more than half the parents survey did not feel like their oncology provider understood what their child was facing when returning to school. We hope the CME can help improve parent provider communication and change the tide on this perception. I want to end on another quote from our interviews. "I kind of feel like school challenges weren't fully divulged. I don't think it was on purpose, but I'm sure the medical team doesn't want to tell you, you've been through all this awful stuff and now it's going to get worse. So it's like no one wants to tell you this, so you just find it out from other parents." I don't think any provider is actually trying not to divulge information. In fact, I would argue that if we all had a better working knowledge of this domain, we will be happy to share with our patients. We know you have a lot on your plate when caring for a child with cancer. The next section of the CME, includes information about communicating school issues during clinical visits. Later sections, will describe the return to school roadmaps in more detail and, suggest how you can disseminate them to families. From this video, it should be clear there is a need for a different approach to communicating about schooling related challenges. In the next segment, we share suggestions for improving communication with parents about schooling related impacts of cancer, or its treatment. As a part of that, we first describe important details about cancer treatments and neurocognitive late effects.
