What might compel more families of children with suspected autism to attend well-child visits?
Might public libraries be telemedicine sites for rural America’s broadband deserts? And how can a 20-minute virtual nurse visit reduce distress for cancer survivors?
Associate professor Pam DeGuzman’s (BSN ’96, MSN ’00, PHD ’12) wide-ranging approach to symptom science is driven by data and analysis that helps nurses understand systems and patient care from the 10,000-foot view, and close-up, too.
You created a nurse-led telemedicine intervention for cancer survivors that really resonated during COVID.
We knew that patients transitioning to the “new normal” phase of extended survivorship struggle with distress and worry in addition to suffering from the continued physical effects of cancer treatment. We also knew that we shove a lot of information about how to take care of yourself as a survivor when treatment ends, but that few survivors ever look at it because all they’re thinking is, “I’m done. I lived; I’m good.” But sometimes, they’re not.
Libraries as telemedicine sites. Easing cancer survivors' distress with live, virtual visits with a nurse. Championing well-child visits to improve access to autism screening and diagnosis. Using data to solve access issues.---
Our nurse-led intervention for rural survivors of head and neck cancers made a profound difference during the pandemic. Delivered over a HIPAA-secure video conference call about six weeks after active treatment finished, our study nurse used a distress thermometer to assess patients, asking questions about family, money, work, and relationships, and their recoveries: whether they had fatigue, jaw-swelling, swallowing, or difficulty speaking. The distress scale was one to 10. For anything over a four, the nurse did counseling, some education, and often offered referrals to an oncology-specialized social worker. The whole thing took 15 to 20 minutes.
Few patients accepted a referral, and those that initially accepted later did not follow through. Doctoral student Veronica Bernacchi—who earned a grant for the work from the Rural Nurses Association—collected qualitative data that suggested a clear reason: patients used the nurse visit as their counseling, trusting the nurse to share their distress, and perceiving it as a more acceptable kind of help. One survivor told us: “I feel a great deal of gratitude to live in a small town in Appalachia—which is where I want to live—but still have great access to world-class healthcare."
Telemedicine requires powerful internet, which rural areas often lack. Did you face tech problems?
We did. In many of Virginia’s rural communities, fewer than 25% of residents have broadband access, according to U.S. Census-tract maps I created. Thirteen percent have no internet at home at all. That led me to evaluate whether public libraries might be feasible telemedicine sites for patients in these broadband deserts. To adequately receive telemedicine, patients really only need a private space, an iPad, or a computer with a camera. Nearly every Virginian lives within a 30-minute drive of a public library. In my analysis, I found the vast majority of libraries—about 85% of them—have all that’s needed for telemedicine to work during physical distancing and quarantines, along with technologically savvy staff. So as an alternative site in areas where broadband’s a fiction, libraries are a powerful resource that’s right under our noses.
Public librarians are highly supportive of this work, too (our study will be published this winter in the journal Public Health Nursing). We spoke with 15 rural librarians from across the country, many of whom view connecting community members with a provider using the library’s broadband internet as consistent with the library mission.
You use large data sets and unique analyses to understand other systemic problems, too. Talk about your latest study on missed well-child visits and kids with Autism Spectrum Disorder (ASD).
I’m equally excited about this work. This analysis of 253 children born in Virginia—which was published in the September 2021 issue of The Journal of Pediatrics —examined the correlation between attending well-child visits during early childhood and the age of ASD diagnosis. Lots of parents may not understand these visits’ value once childhood vaccinations are complete, and therefore miss these appointments at which autism screenings are done at regular intervals. We found that kids who were ultimately diagnosed with ASD attended fewer than half of their well-child visits during early childhood.
We care about this, of course, because research has firmly established that kids who are diagnosed early with autism fare far better down the line the sooner interventions are made available to them.
Right now, in the United States, the average age of diagnosis of a child with ASD is 51 months (4.25 years), even though it can be reliably diagnosed in kids as young as one- to two-years-old. We found that kids who missed certain well-child visits between ages two and four were diagnosed much later. For example, kids who missed their two-year well visit were diagnosed 10 months later than those kids who attended this visit. So it’s clear that nurses especially can have a role in educating parents to attend all well-child visits during the first five years of life.