At the very start of the new year, a research team, made up of personnel from the University’s School of Nursing, the School of Medicine and the Center for Global Health, embarked on their first step towards two research goals — to develop a mobile app that healthcare providers can use to help manage cancer pain and to help strengthen and build research capacity in Nepal.
Asst. Prof. of Nursing Virginia LeBaron has been conducting global health work in Nepal since 2004. Since then, LeBaron has partnered with many members who now make up the Nepalese Association for Palliative Care. The University and Nepali teams have now become partners on a bigger scale, and in August of last year, they received a $350,000 grant from the Fogarty International Center though the National Institutes of Health.
“In many low- and middle-income countries around the world, the focus is traditionally on infectious diseases,” LeBaron said. “Within countries like Nepal, there’s this growing number of people that are presented with cancer, and the systems aren’t always in place to help manage that.”
In addition to the growing cancer issue, access to pain medication is another factor that has to be tackled. While there is an overuse of pain medication in the United States, countries like Nepal have the opposite problem.
“You have this scenario where [cancer patients] are presented with really late-stage tumors, tumors that we would rarely see here because people have had access to screening or early treatment,” LeBaron said. “There, we see a lot of people presenting with very large, difficult tumors that have a lot of pain and more difficulty getting pain relief.”
This is where the pain-management app that LeBaron is hoping to create comes into play. For many years, the NAPCare group has been writing pain-management guidelines which help healthcare providers — particularly oncologists — manage cancer pain. The issue is these guidelines are paper-based.
According to LeBaron, many health providers don’t know these guidelines exist or simply don’t use them. In response to this, the University team is trying to transition from paper to a technological platform that is highly accessible and available. In addition, they are hoping the app will track when guidelines cannot be followed, allowing for a better understanding of the barriers Nepali practitioners face when trying to manage patients’ cancer pain.
In early January, LeBaron and the team visited four different hospitals in Nepal that each serve a different kind of cancer patient — these included public, private and hospice care within the urban area of Kathmandu and one center in a more rural setting. The first step while there was working collaboratively with the Nepali team to create a survey, which was to be sent to oncology care providers, mainly nurses and physicians. The survey asks a series of questions designed to better understand the barriers that Nepali health providers face when managing cancer pain and to gain feedback about the app.
For LeBaron, collaboration between the two research groups is extremely important. The idea is that the survey will be co-created to gain as much insight as possible from the Nepali team, ensuring they ask the right questions to collect the most beneficial information.
According to Josh Moore, Nursing graduate student and research assistant for the project, this project is something that is cutting-edge not only for Nepal but the University community as well.
“The palliative care program that [LeBaron] is wanting to implement is something that I don’t even see in our hospital…. It is really groundbreaking and new,” Moore said. “It could be huge in not only helping the practitioner or provider at the bedside … but it’s actually helping track where there are lapses in the ability to provide adequate pain control.”
As the research assistant, Moore taking charge of the virtual library being created for the app. Due to his experience with research, another of Moore’s main focuses is increasing Nepal’s research capacity. During the team’s trip to Nepal, he was able to lead a talk on conducting research in addition to gathering information and visiting the hospitals.
“Part of the goal of this grant is to actually help them start conducting research like this on their own,” Moore said. “There’s a lot of research out there on how countries like the United States should conduct research in Nepal, but there’s nothing out there that tells Nepal how to conduct research in Nepal. That’s what we’re trying to bridge the gap between.”
Moore and LeBaron are aiming to improve research capabilities in local community groups in Virginia — from places like Charlottesville to rural areas where access to medical care is more limited. They hope that by the end of the two-year grant, their models will continue on to settings far beyond the University and Nepal.
The next steps in the research, according to LeBaron, are synthesizing the information gathered in the surveys and designing an app based on those responses. The app will then be pilot tested, and the research team will make adjustments based on feedback from the test before the app begins collecting data.
LeBaron hopes that in the future, this app can help researchers understand the issue of limited access to medical resources in Nepal and other countries.