1. What is the decision or change (e.g. clinical topic, practice guideline, system design, delivery of care) you are facing or struggling with where a summary of the evidence would be helpful?
Telehealth usage and best practices for children with neurodevelopmental disabilities and their caregivers.
2. Why are you struggling with this issue?
1 in 5 children in the US live with a neurologic condition, which are wide-ranging with various causes, complications, and outcomes. Many conditions requiring life-long management of physical, cognitive, emotional, and/or behavioral symptoms. Despite the prevalence of neurologic conditions in the pediatric population, children and their families wait an average of 9 weeks in the United States to access a child neurologist. These families also experience social and economic challenges with nearly half reporting financial hardships, and a quarter of living in poverty.
In March 2020, these wait times changed almost overnight when telehealth became the primary way that Americans accessed healthcare. Our organization, the Child Neurology Foundation (CNF), which supports children with neurologic conditions and their families, wanted to better understand how the sudden change to telehealth affected our communities.
CNF first surveyed families in summer 2020 and then facilitated focus groups and interviews with caregivers and clinicians to dig deeper: Families told us that their wait times were dramatically reduced, with half receiving a neurology appointment the same week of their request. They also reported their children’s behavior was often better during telehealth visits and that they were more able to focus during visits. However, 39% of parents told us that they would never again choose telehealth for their child. Despite the convenience of telehealth, they were concerned about the lack of connection between their child and providers. They missed small talk with clinicians, saying those chats are where much of the healing happens, especially for children with behavioral challenges or intellectual disabilities. Clinicians also reported somewhat contradictory feedback, reporting that while they valued improved continuity of care—with fewer patients falling through the cracks as check-in conversations became easier—they were frustrated by less effective physical exams, distracted parents and distracting home environments, and sometimes felt like they weren’t being heard.
We have tried to address the issues within our capacity to do so. With our partners, we developed resources both for parents and clinicians to encourage best practices for a telehealth visit—both to prepare the child and caregiver for the telehealth appointment, but also to remind clinicians that patient engagement can look different through a screen.
To address some access issues our families experienced in the transition to a more digital world, CNF launched a Digital Access program in June 2021. We provide families with a child living with a neurologic condition with a Chromebook, an internet hotspot, and technology use training to access online resources, attend telehealth appointments, and connect with their communities online. We prioritized lower income families, with 64% of program participants having at least one adult in their household who is unemployed. Participating families represent over 30 neurologic conditions, with over half experiencing Autism Spectrum Disorder.
So far, this program is seeing positive results. Based on preliminary data: 36% of participating families use their device daily; 69% report improved telehealth visits once receiving their device and hotspot; 87% report increased ability to connect virtually with their support network and 67% can better access resources for their children’s schooling. However, we are also learning that more than hardware and improved internet access is needed. Many families have said that because of their children’s complex health needs, the technology itself needs to be more accessible: trackpads are unusable for some children with movement disorders or developmental disabilities, and a Chromebook’s built-in speakers may be insufficient for children with auditory-processing disorders or who are hearing impaired. In addition, our participating families have reported continued needs in accessing telehealth and other digital services, stating that 16% lack reliable transportation to attend follow -up health appointments in-person; 27% are under-or uninsured and 29% still struggle to access the internet because they live somewhere a data hotspot does not work well enough to have reliable, fast internet access for video visits. Moreover, 20% of our participating families still have difficulty finding a child neurologist they like for their needs, and 58% say they still need information and education to fully understand their child’s complex health needs.
While the Public Health Emergency that resulted in the policies creating an environment for telehealth to be as widely used will likely soon end, it is clear that there is enough good for families of children experiencing neurologic conditions to have this modality of care be something in a family’s toolbox to provide the best care possible to a child with complex health needs. While we have tried to study and address the issues within our own community, an evidence review from AHRQ would help us, and other patient advocacy organizations that serve similar patient populations, navigate the peculiarities of pediatric telehealth, particularly among chronically ill and disabled populations.
3. What do you want to see changed? How will you know that your issue is improving or has been addressed?
Based on the work we have done over the past two years, we know there is much that can be done to create better, more inclusive telehealth for children with complex hea lth needs. Those changes include improved education for clinicians and caregivers, empowering both stakeholder groups to feel more confident deciding when, and how, to use telehealth in the medical treatment of a young person with a neurologic condition. CNF and our partners have worked on this, and will continue to do so; this education will be even more effective with an adequate understanding of what the landscape of pediatric telehealth is at a national level.
The improvement of pediatric telehealth can be supported through systems-level interventions that remove barriers for all Americans to access quality healthcare. AHRQ’s evidence report on telehealth usage for children with neurodevelopmental disabilities and their caregivers will only strengthen these advocacy efforts.
We will know there is improvement in this area based on the feedback we hear from the families we serve; both through the regular feedback we receive from working within our communities, and through the data gathering of our annual Needs Assessment where we have been tracking for the past two years how our families use telehealth, and our Digital Access program, which is launching its second year this summer.
4. What will you do with the evidence report?
CNF is committed to our work in digital health; we see this as an ongoing need within our community. While an evidence report soon would allow us to incorporate the latest findings into the work we are currently doing, we would be grateful for this report at any time—we do not see our work in this area slowing down.
Optional Information About You
What is your role or perspective? Patient Advocacy Organization
If you are you making a suggestion on behalf of an organization, please state the name of the organization Child Neurology Foundation
May we contact you if we have questions about your nomination? Yes
