Telehealth
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Telehealth
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This past summer, as we realized that telehealth was becoming a bigger part of our community’s lives because of COVID-19, we solicited feedback from parents and caregivers about their satisfaction with their telehealth visits. The results were surprising.

Despite reporting lower wait times and higher levels of convenience, 34% of survey respondents reported that they would not opt for telehealth in the future if given the choice.

At CNF, we recognize the power of telehealth to improve access for so many children experiencing neurologic conditions and their families, and it provides another way to stay safe as we navigate our new normal. For that reason, CNF is now turning our efforts to joining parents, providers, and patient advocates to make every telehealth visit a positive experience for all members of the child neurology community.

In the video below, you can review the results of our survey, and listen to Dr. Anup Patel, Section Chief of Neurology at Nationwide Children’s Hospital and President-Elect for CNF, and Holly Paauwe, a parent raising a child with a rare neurologic disorder, discuss how these results resonate in their experiences.

A snapshot of the results of the Telehealth Satisfaction Survey:

Number of telehealth visits per child

 

“It’s not a surprise. Children with complex neurological conditions have a multitude of specialists and therapists involved in care. Many of these kids may be getting weekly OT, PT, speech, things like that, and all of this had to convert for so many of our kiddos quickly.

“So much of this period of time has a lot of negative connotations … but telehealth jumps really forward, maybe even decades ahead of where it might be otherwise.

Thinking about the next time [my daughter sees her neurologist] virtually? That wouldn’t have happened otherwise. And I’m grateful for that.

It’s exciting to think about the potential in the future, even beyond Covid.”– Holly Paauwe 

Telehealth visits with different kinds of providers

CNF serves families experiencing a variety of neurologic conditions, many of which require care teams from many specialties. The data shows respondents were generally happy with the telehealth they received in neurology, but telehealth administered through other specialties and providers can be more challenging.

CNF is committed to working with our partners as we identify solutions for better care in our new normal for all families experiencing neurologic conditions—no matter how large their care team. 

Telehealth visits with new providers

Roughly one-third of all the respondents’ telehealth visits were with new providers.

“I was surprised with how many of our respondents had a visit with a new provider. It just goes to show what we talked about earlier—the complexity of the care that our kids need. This obviously meant that they were in this process of having to be seen by new providers and those also had to be shifted to the new telehealth model.”- Dr. Anup Patel

Wait times for a telehealth appointment

Families experiencing neurological conditions wait on average 9 weeks for their first visit with a neurologist. Telehealth is changing that landscape and improving access.

Almost 95% of patients requesting telehealth neurology visits receive a visit in less than 9 weeks, with almost half of all patients receiving a neurology appointment within a week of their request.

“A lot of times, there’s just not enough providers, even in big cities…so you wait a good chunk of time to get an appointment. The average for neurology’s first visit is 9 weeks, so to see data that shows that 50% of neurology respondents got an appointment within 1 week is such a huge improvement that impacts care in such a positive way.”- Holly Paauwe

“We need to make sure that this still resonates post-pandemic. Access remains a challenge in child neurology, and we can only do so much—create more child neurologists, cure more diseases—but here’s another way to help with that access issue. Geography is also potentially overcome here. In the future, you can just schedule a telehealth visit with me, and you’re not going to have to get in the car, drive 3-and-a-half hours, park, all that stuff. I’m really excited about it.”- Dr. Anup Patel

Meaningful interactions through telehealth

“I love being able to see my patients in their home setting. I have a teenage patient with epilepsy and intellectual disability. It’s mild, but he and I haven’t connected as much as I would like in person … but in his telehealth visit, we connected greatly because he’s a huge fan of Legos and was able to show me his Lego collection, which we would have never been able to do! And it was such a warming experience – you could see that it just shifted his demeanor. And I was able to connect in a way that I perhaps hadn’t been able to in the past.”- Dr. Anup Patel

“I’m a big believer in the power of a narrative medicine approach: every patient has a story. And caring for them well means learning part of their story. Telehealth means getting to see people in their homes and their environments and a less contrived setting –  it allows a way to get to know them in a way that you may not otherwise experience in a clinical setting.”- Holly Paauwe

Physical examinations during telehealth visits

“In neurology, it may not be as big of an issue. It certainly is for new patients and patients you’re trying to evaluate, specifically for things like focal weakness or one-side changes or different things like that. But in epilepsy – I don’t necessarily have to lay hands. It’s more of a conversation.”- Dr. Anup Patel

Comments from parents and caregivers who took the survey:

“Neurology is very easy through telehealth. General medicine where physical things appear on the outside of the body are more difficult via telehealth.”

“It is much harder for Physical Therapists and Occupational Therapists to demonstrate moves without being hands-on.”

“The only downside of telehealth would be the personal interaction-ie, the pulmonologist can’t listen to his lungs to truly determine if he’s OK, GI can’t check his stomach. But I would still prefer telehealth as an option. Most of the time the doctor and I just need to talk things through and it’s been so beneficial. Especially with neurology!”

Ability to ask questions

“Caregivers are coming to video telehealth appointments more often with a list of questions.

I love questions from caregivers. So, I’ll ask them to put them down on a piece of paper—well, that’s hard to remember! OK, I’ve go to get my kid in the car, I’ve got to go down to visitor parking, I’ve got to bring up this piece of paper…’ Where as in the telehealth visit, they’re like ‘OK, the paper is right next to my video device,’ and so we’ve been able to go one-by-one and it’s calm. And I love it.”- Dr. Anup Patel

“[It strikes me that] families are more comfortable asking questions in the comfort of their own home, especially if they are asking a hard question, or a question where maybe I’m not agreeing with that next step forward. So, maybe that virtual realm can make you more comfortable.”-Holly Paauwe

Convenience of a telehealth visit

“Here’s the one that strikes me as the benefit and the positive [of telehealth]. This is overwhelming – it’s just easier. You don’t have to drive a long distance and park and navigate through the health care system to register.

This definitely made me smile because convenience is a huge part of quality of life and quality of care.”- Dr. Anup Patel

“[For in-person appointments], it’s two work days lost for my husband and I to both be at our daughter’s appointment. And if it’s during the school year, it’s a school day missed. Those things all compound.” – Holly Paauwe

As a caregiver, would you choose telehealth?

“This question is about the sum, the whole of the experience. For me, it brings up the possibility that for some families, they were weighing things more heavily, like the lack of the physicality and the relationship that comes from that physicality and the doctor being able to put hands on that child. As a parent, I can appreciate that.

We rely on our doctors to pick up on things that we haven’t noticed or seen, and I think that weighed more heavily on parents.”-Holly Paauwe

“I think if we asked about a hybrid model, we may have gotten different responses.” – Dr. Anup Patel

Comments from parents who took the survey:

“I would feel differently if my child didn’t have a relationship with the provider previously to the telehealth appointment. Things also seem to be going well and this is just a routine visit to get prescriptions refilled.”

“My child didn’t participate in the telehealth visit as much as she may have during an in-person visit.”

“I think interaction between doctor and child is more authentic in an office setting.”

“I really like telehealth visits, but with the severity of my son he needs to have in-person appointments as well. I love using this in conjunction and not having to visit a healthcare facility as often.”

“The doctors did fantastic with telehealth.”

 

CNF plans to convene a group of key opinion leaders in the child neurology community to discuss what is being done in the telehealth arena and work collaboratively to improve the patient and provider experience by the end of the year. Keep an eye on this page for updates.

Additional telehealth resources:

CNF thanks our 2020 partners - UCB and Ultragenyx - for their support.

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