Dietitian: Move cystic fibrosis nutrition virtual visits from disadvantage to opportunity

After surveying patients with cystic fibrosis and dietitians, one presenter at the North American Cystic Fibrosis Conference offered opportunities to build upon what is working with “telenutrition” in the cystic fibrosis clinic.

“We can’t afford to just press pause and wait for everything to go back to normal. We have to find a new normal for delivering good, quality nutrition care in the midst of the pandemic,” Lucy S. Gettle, MS, RDN, CNSC, of the University of Virginia Medical Center, said in her presentation. “A lot of patients have actually reported liking telemedicine and want it to continue in some capacity, even after COVID.”

Gettle presented a survey of 66 dietitians and 45 patients and parents of patients with cystic fibrosis.

In the provider survey, there were 112 answers for platforms, suggesting that dietitians are using multiple platforms in providing telehealth visits, Gettle said.

Although 52% of the providers responded that virtual visits were worse than in-person, 39% said they were not better or worse and 9% said virtual visits were better than in-person.

The most common challenge reported was not having access to anthropometric measurements, followed by technology or connectivity issues on the patient side, lack of lab results, no nutrition-focused physical exam and the inability to see the patient’s full body. Conversely, the dietitians reported advantages in being able to see the patient’s home environment, more time with patients, more relaxed and comfortable patients and families, seeing patients who otherwise do not meet with the dietitian, a flexibility in scheduling and reduced exposure for the patient along with the ability for the dietitian to work from home.

In the patient survey, of which 30 were parents of children with cystic fibrosis, 24% reported they had not yet had a virtual visit, 51% said virtual visits were neither better or worse than in-person, 13% said virtual visits were worse and 11% said they were better.

The most common challenges were similar to those given by the providers: lack of anthropometrics and technology issues. Additionally, patients said there was a lack of access to video visits and children were not interested in the virtual platform.

In advantages reported, patients said virtual visits are more convenient and save time, parking and travel. They also reported being more relaxed at home, lowered risk of exposure and the ability to show the registered dietitian their pantries and medicine cabinets.

“In this unprecedented time, we all have a choice to make whether in our personal lives or our work lives about whether we are just going to coast and hit the pause button and just try to survive this whole pandemic and all the changes and turmoil its caused or we try to figure out a way to thrive,” Gettle said.

Referencing studies about telenutrition pre-pandemic and the surveys, Gettle made suggestions about how to use telenutrition to the advantage of patient and provider:

• Ask to see aspects of the patient’s home life: kitchen pantry, vitamins, enzymes, tube feeding supplies.
• Set up appointments to observe areas of the patient’s life where there may be concerns: parent-child mealtime interaction, cooking, setting up tube feeds.
• Coach patient’s through anthropometric measurements either live during a virtual visit or via recorded instruction.
• Screenshare information or send links to educational materials via the chat function of a platform.
• Invite family members and care partners to join together for a virtual visit; this would be especially helpful in pediatric cases where the child resides in two homes.
• Include other specialists and reconvene and “huddle” together after a virtual visit.
• Provide group education and support on nutrition and healthy living.

“Don’t forget to keep the best of your in-person visits. That is building the connection, motivational interviewing, teach back, sending them written information at the end. Whatever it is that works well for you in person, if you’re able to replicate it in the virtual environment, please keep doing that,” Gettle said.

To overcome some of the challenges noted, Gettle suggested asking for private funding for scales or look into insurance coverage for them. She said patients should get a connectivity tip sheet to try to head off technology issues and her clinic is trying to obtain funding from local internet providers so patients have increased access.

“The geographical barriers are now eliminated. It’s really about having that technology. What can we do to leverage that?” Gettle asked. “If we collaborate and share with other colleagues around the country, we can provide quality nutrition education and resources and courses ... for our patients. This is a great opportunity to use our resources and provide that information to our patients.”