2
Telehealth in Hospital and Outpatient Settings
There have been many lessons learned and “silver linings” from the pandemic, including virtual visits and virtual healthcare, said Marc J. Tassé (Committee Member). In this session, speakers spoke about how their programs and practices shifted during the pandemic, and how these shifts could be leveraged to improve care in the future.
TELEHEALTH ADVANCES FOR AUTISM SPECTRUM DISORDER
When the pandemic hit, said Rebecca Shaffer (Cincinnati Children’s Hospital), the autism and Fragile X practices at Cincinnati Children’s Hospital had to shift to telehealth. There were a number of benefits related to this shift, she said. The telehealth version of their intensive outpatient program for emotional dysregulation had high acceptance among family members, and the virtual format enabled the program to recruit autistic youth across the country. There was greater engagement among participants, and outcomes were better than they had been in-person. Shaffer speculated that this could be due to patients feeling less anxiety about participating via chat rather than speaking in person. The Fragile X telehealth program also expanded during the pandemic, offering telepsychiatry and telepsychology. Shaffer said that prior to the pandemic, it was burdensome for families to come to therapy and she could usually only see them once a month. With the expansion of telehealth, she and her colleagues were able to target and address behaviors and adaptive needs in a more productive and successful way.
I started telemedicine 15 years ago and the only thing that has changed, in a good way, is acceptance of telemedicine. It has always been feasible.
Craig Erickson, Cincinnati Fragile X Center
(quoted in Rebecca Shaffer’s presentation)
Assessment
In addition to treatment of autism and related disorders via telehealth, Shaffer highlighted that remote assessment and diagnosis are also possible. Early evidence shows a concordance of 80 to 95 percent between in-person and remote approaches, and conducting assessment virtually allows providers to see children and youth in their natural environment without the added stress and discomfort of a new clinical environment. Based on this early success, Shaffer said that it is time to identify the best candidates for remote diagnosis, and to develop collaborative models of diagnosis that involve pediatricians and other providers.
Telehealth assessment is feasible and accepted among clinicians and families. Children who have more impairment and higher ASD [autism spectrum disorder] concern appear to be an ideal group for telehealth diagnostics and primary care screening can be used to triage patients into the right diagnostic setting. The biggest barrier has been insurance company recognition of diagnoses from telehealth. Unfortunately, we have had to spend significant time educating insurance companies.
Debra Reisinger, Riley Hospital for Children
(quoted in Rebecca Shaffer’s presentation)
Caregiver Perspectives
Caregivers largely have had positive feedback about telehealth, reported Shaffer. There were high rates of satisfaction during the pandemic, and reports of a decreased burden on caregivers and children. Moving forward, caregivers expressed support for a hybrid model when possible, such as an in-person visit every six months with virtual visits in-between. While these early reports of satisfaction are positive, Shaffer said that there is a need to hear more diverse perspectives and to involve the voices of self-advocates.
An inperson 30–60minute appointment at our clinic is an entire day activity. Every aspect of the day has to be considered, from leaving the house early in case you have traffic delays, to planning for food throughout the day, to having a “reward” at the end of the day. And that does not include all the hours of planning done ahead of time for that day, from scheduling the appointment at a time that will minimize traffic delays, to taking care of all the home parts (time off work, other children, etc.). You
have to think of everything, because if one thing goes wrong… It takes a lot of time and emotional energy. Plus you have to plan for the actual appointment—summarize what has been going on with your child, write down your questions. With telehealth, you only need to think about the actual appointment. Easypeasy. When possible, telehealth visits are a wonderful option.
Caregiver
(quoted in Rebecca Shaffer’s presentation)
Insurance Coverage
While most services provided via telehealth at Cincinnati Children’s Hospital are now being reimbursed, Shaffer said that there are some gaps. For example, employers may opt-in or opt-out of coverage for telehealth, and some types of group therapy—such as multi-family group therapy—are not covered. The gap for family therapy has created a conundrum, said Shaffer. Group therapy is only evidence-based when there are groups for both the patients and the caregivers. If caregivers groups cannot be held due to lack of coverage then their impacts cannot be evaluated, which means that the group therapy provided to patients can no longer be evidence-based. However, if caregivers do participate in group therapy, they incur a large out-of-pocket expense. Shaffer emphasized the importance of this issue being solved. Another lingering issue, she said, is whether insurance companies will recognize remote diagnoses of autism and cover future expenses.
It would be an incredible disservice to families of children with developmental disabilities to limit an evidencebased service just because it is provided via telehealth, especially when we have emerging research data to suggest comparable efficacy of telehealth services.
Sarah Greenwell, Cincinnati Children’s Hospital
(quoted in Rebecca Shaffer’s presentation)
Moving Forward
Making autism and Fragile X care accessible via telehealth after the pandemic will require further work, noted Shaffer. Psychology is leading the way, with initiatives to remove barriers and expand access across the United States. For example, PsyPACT1 is a licensing certificate that allows providers to cross state lines to provide care via telehealth. More research is needed in order to study care delivered via telehealth, said Shaffer; she identified several research gaps:
___________________
- Comparison trials of diagnostic tools;
- Diverse and self-advocate involvement;
- Direct intervention trials with autistic individuals;
- Examination of disparities and access; as well as
- Interventions for profound autism.
For our family, telehealth has significantly improved access to professionals and clinicians. We are two hours away from the closest Fragile X clinic, making our regular visits a full day endeavor when inperson. Through telehealth, we can have both boys seen in about 30–45 minutes without the expense of traveling. Telehealth takes away so many barriers and provides access without the added stress and anxiety, just by allowing us to be in a familiar setting.
Caregiver
(quoted in Rebecca Shaffer’s presentation)
TELEHEALTH IN MEDICAL HOMES
The Bower Lyman Center serves over 3,000 children and young adults with special healthcare needs from birth to 23 years of age; many are categorized in the highest level of medical complexity, said Rita Nathawad (University of Florida College of Medicine—Jacksonville). The Bower Lyman Center includes four collaborating programs, and the goal is to provide comprehensive medical home services including nurse and social work care coordination, referral coordination, transition to adulthood counseling, Medical Legal Partnership services, integrated mental health services, and palliative care services. “Telehealth allowed us to meet this goal during the pandemic,” said Nathawad.
Types of Visits
Nathawad explained that there were four types of virtual visits available at the Bower Lyman Center during the pandemic. The first was a standard virtual visit, in which a traditional office visit is converted into a virtual one. The Bower Lyman Center also offered a hybrid virtual visit, in which patients are seen in-person with reduced contact. In a hybrid virtual visit, the patient and the provider first meet via telehealth while located in two different rooms in the clinic. Following this meeting, the provider goes to the patient’s room to conduct a physical exam. The treatment and management plan is then discussed via telehealth. Many of the Bower Lyman Center’s patients need to be seen in-person and some cannot wear a mask for a variety of reasons, therefore the hybrid visit allows for in-person care while minimizing risk to both patient and provider, said Nathawad. Both
standard virtual and hybrid virtual visits are billable in the state of Florida, she said. The other two types of visits offered were a care coordination visit and a community partner collaborative visit; both are non-billable services. In a care coordination visit, the patient meets with a nurse and/or social worker in order to identify and address needs such as financial challenges or accessing durable medical equipment. The community partner collaborative visits were virtual meetings between Bower Lyman Center’s staff, patients, and community partners in order to ensure that referrals to partner services went smoothly.
Benefits
These virtual visits, said Nathawad, had several benefits. Virtual visits were easier for patients to access; it can be difficult, uncomfortable, and time-consuming for patients with medically complex conditions to travel to in-person appointments. When an acute issue arose, Nathawad said she could quickly meet virtually with patients in order to assess the situation immediately rather than scheduling a future visit. Further, meeting with patients virtually allowed providers to have a lens into the patient’s home as well as to better understand their challenges and needs.
Moving Forward
Looking to the future, Nathawad explained that several actions needed to be taken in order to make interdisciplinary or coordinated virtual visits accessible moving forward. First, it is essential that all patients have access to devices and Internet connections. Second, patient advocacy is needed to ensure reimbursement of all services, including care coordination and interdisciplinary visits. Third, research is needed to study the barriers faced by non-English speakers and how these barriers can be addressed. Finally, there is a need to remove licensing barriers that prevent providers from conducting visits with patients across state lines. Telehealth should become a standard of care that all practices are required to offer their patients, concluded Nathawad.
TELEHEALTH FOR CHILDREN WITH COMPLEX HEALTH NEEDS
Before the pandemic, there was low-level use of telehealth and there were barriers to its use in the care of children with complex medical needs, said Chris Stille (Children’s Hospital Colorado). Prior to March 2020, most children with complex needs had three to four outpatient visits per year, per specialist, he said. There was scant evidence on how telehealth could be used, and telehealth infrastructure was expensive (e.g., software licensing,
equipment). Regulatory barriers were common, including licensing and malpractice insurance barriers across state lines, a lack of HIPAA-compliant systems, and lack of reimbursement for telehealth. Patients, families, and providers were inexperienced with the use of patient portals and telehealth platforms. Further, said Stille, the usability and potential harms of virtual visits were unknown.
When COVID-19 forced the closures of many clinics and states instituted stay-at-home orders, said Stille, children’s complex needs did not go away. Hospital leadership directed staff to ramp up the use of telehealth. Stille and his colleagues began by communicating with families by telephone and through the patient portal, which had major limitations. Soon, however, the hospital invested in the necessary infrastructure for telehealth, regulatory barriers were suspended, and a major effort was made to educate providers, teams, patients, and family members. Within three months, telehealth visits at Children’s Hospital Colorado grew from three percent to 25 percent of all visits, or from fewer than 1,000 a month to over 10,000 a month.
Benefits
Stille echoed other speakers in saying that there are a number of benefits to telehealth. It can be easier for families to access, and safer for both families and treatment teams (e.g., reduced risk of infection). It is less expensive for families and requires fewer hours missed at work or school. Telehealth can replace some in-person visits without decreasing visit quality, and it is easy for multiple family and team members to join visits. Further, families reported feeling more connected to their providers when meeting virtually. Stille shared a quote from a family member of a patient:
If we can do a televisit, I don’t have to take half a day or more off of work, spend an hour getting James and his equipment into the van, and drive in traffic an hour or more each way. James is less anxious and more comfortable. He’ll let you look at his Gtube, where he won’t in the office. And you can see us at home and meet our dogs!
Challenges
While there are numerous benefits to telehealth, explained Stille, there are also challenges and barriers. Remote visits have inherent limitations, including the lack of ability to conduct a physical exam, conduct procedures, or give immunizations. Technological glitches can make visits frustrating or unproductive. There are equity issues involved in telehealth, including lack of high-speed internet in rural and low-resource areas, language barriers,
and health and technological literacy. The scheduling and timing of visits may be different and some types of visits may not be billable.
Moving Forward
Considering next steps, Stille noted that in a post-pandemic world, care for children with complex medical needs can be improved by retaining some of the best practices of pandemic care. Many types of visits, including follow-up visits and multidisciplinary visits, could be conducted by telehealth. This would require changes to reimbursement, funding for infrastructure, and reduced regulatory barriers. In addition, he said, it is critical that providers elicit and respect the preferences of patients and families. Individual preferences for telehealth or in-person care can vary widely and unexpectedly, he said.
FAMILY VOICES
Alyssa Ware (Family Voices) joined other speakers in observing that there were both benefits and challenges related to the use of telehealth during the pandemic. Family Voices is a national family-led organization of families and friends of CYSHCN, and during the pandemic, the organization engaged with families and partners to improve access to and the delivery of telehealth. The organization received an award from the federal government as part of an effort to navigate the rapid influx of telehealth, to identify barriers and promising practices, to build partnerships, and to develop strategies for supporting communities, families, and professionals.
Through this work, said Ware, a number of strategies were identified to help families overcome barriers to healthcare, and Family Voices developed materials and resources to further these strategies. The “Nuts and Bolts of Telemedicine: Essentials for a Family-Centered Experience”2 is a series of webinars that walks families through the process of participating in a telemedicine appointment. “Barrier Busters” is a list of 14 common barriers to accessing and participating in telemedicine and ways to address them. Both of these resources are available in English and Spanish and are designed to be shared with families via social media or other means, said Ware. Family Voices also developed infographics, checklists, and resources for youth. In addition to these resources, Family Voices identified other strategies that can be used to improve telemedicine:
- Collaborate with partners to increase knowledge of telehealth technology for organizational staff;
___________________
- Partner with libraries, technology loan programs, schools, universities, and telecommunications companies to increase family access to devices and internet services for families; and
- Address issues of confidentiality and privacy up front to reassure families the information they share is secure.
Family Voices also focused on identifying strategies for reaching families from a range of backgrounds and cultures, said Ware. These include: using data sources to understand the demographics of the population; using postal mail, radio, and announcements in local newspapers; creating partnerships with community leaders, cultural liaisons, and community services; and co-creating telehealth materials with community partners to ensure they are culturally and linguistically appropriate.
DISCUSSION
Tassé moderated a discussion session with the panelists, asking his own questions as well as those from workshop participants.
What challenges do you face in sustaining promising practices and services beyond the pandemic?
The two biggest challenges, responded Shaffer, are licensure issues and insurance coverage. Providers often cannot treat children across state lines, even if geographically close, and many critical services for autistic children, such as family therapy and caregiver groups, may not be covered. Ware added that another challenge is family access to the internet and comfort with technology; she said that support for families accessing telehealth is an important piece that often goes unrecognized. Stille agreed with Ware, saying that families differ in their comfort with telehealth, and that providers should ask rather than assume. He added that there is a need for continued investments in infrastructure and support for technology, and that telehealth is particularly useful for certain types of visits, such as behavioral health follow-up and multi-disciplinary visits. Nathawad argued that internet access should be considered a public good, and that there are huge equity issues involved in telehealth. If telehealth is beneficial in some circumstances, she said, it needs to be accessible to all so that disparities are not widened.
How do we consider the intersectional needs of children who are marginalized by multiple factors?
The biggest thing, said Stille, is to recognize that they exist. Nathawad agreed and said there is a need to put mechanisms in place to explicitly
identify the needs of patients, as well as to explore how intersectional identities may create barriers to care for some patients.
How do families feel about providers being “in” their homes via telehealth visits?
Some families are not comfortable with it, said Shaffer. For these patients, audio visits rather than video visits were a good option, however, billing for these is trickier. Ware added that some families may want a video visit but do not have a space that is quiet enough or private enough. She said it is important to talk through the barriers that a family may be facing in order to identify the most appropriate kind of visit. Nathawad said that privacy is a big concern for adolescent patients, particularly when discussing mental health concerns. It is critical to ensure that the patient feels comfortable in their space and that the family is supportive and respectful of the child’s privacy.
If you could leave the workshop audience with one message, what would it be?
- Shaffer: Pandemic-era telehealth services need to continue, and we need research and funding in order to support the sustainability of this approach.
- Ware: It is critical to partner with families to understand what their needs are, and what supports they may need to engage effectively within telehealth visits.
- Stille: Sustaining telehealth options will be a state-by-state process, and stakeholders in each state—including Medicaid directors, health officials, and licensing agencies—must pay attention to what is needed for the people in their state to get the telehealth services they need.
- Nathawad: Care for children and youth with special healthcare needs must be comprehensive and include services that are not necessarily billable, such as addressing social determinants of health. There is a need for advocacy to ensure that comprehensive care is feasible and sustainable for all providers and patients.
This page intentionally left blank.
