Lower income countries increasingly face two troubling, but related problems: exploding rates of patients with advanced cancer and an alarming scarcity of pain medicine to relieve their suffering.
With growing industrialization, countries like Nepal are home to increasing populations of people ravaged by late-stage cancer due to a lack of primary care and screening, the stigma and fear that a cancer diagnosis carries, and driving issues, like geography, access, and poverty.
“In lower-income countries, roughly 70 percent of patients are first diagnosed with late stage cancer and have critical pain needs,” said Virginia LeBaron, an assistant professor of nursing who first developed partnerships with Nepalese oncologists in 2004. “Seeing the suffering that results when pain medicine is unavailable was life-changing, and got me really thinking about why that is – and how the situation can be improved.”
70%percentage of low-income countries' cancer patients who experience critical levels of unchecked pain
With a two-year, $350,000 National Institutes of Health Fogarty grant, LeBaron and co-investigator Rebecca Dillingham, director of the Center for Global Health, will partner with Nepalese clinicians to develop and pilot-test a mobile application for use at the bedside to augment clinicians’ knowledge of pain relief protocols.
In addition, the app will identify barriers to pain relief that clinicians and patients may experience – an inability to source medicines, or get to a pharmacy where they’re available, for example. Testing at four diverse sites – a rural hospital, a government-run urban hospital serving the poor, a private hospital tending wealthier patients, and a hospice facility in suburban Katmandu – LeBaron, Dillingham, and their Nepalese partners will modify the technology so it’s scalable, flexible, and able to be expanded for use in other low-resource, high-need countries where there’s a dearth of palliative care knowledge and pain medicines.
Worldwide, between 60 and 90 percent of cancer patients experience moderate to severe pain, a reality that can be exacerbated by stringent government restrictions, import, and production rules, and worries about addiction, diversion, and misuse of narcotics. Too, international narcotics control boards that dictate which and how many opioids are allowed in a country tend to be based on consumption figures for the prior year, which can create a continuous cycle of inaccessibility.
“So if a country’s consumption of opioids is consistently low, its estimates for the following year are also low, and the lack of access to pain relief presents itself year after year,” LeBaron explained.
In some ways, Nepal is better off than most. Founded in 2009, the Nepalese Association for Palliative Care (NAPCare) established guidelines for managing pain based on recommendations from the World Health Organization, and has worked tirelessly to improve access to pain relief within the country. The NAPCare pain protocols haven’t been widely distributed, however, which means many clinicians are still without the information they need to treat cancer patients’ pain.
Working closely with Nepalese oncologists, site leaders, and clinical investigators, the proposed app - initially developed for a smart phone - will leverage locally developed pain management guidelines specifically tailored for cancer care settings in Nepal. The ultimate goal is to use the pain app for Nepalese clinicians as a model that can be replicated in other lower resource settings and countries.
Because of the unique focus on the NIH's Fogarty grant, LeBaron and Dillingham will not be leading the charge so much as walking alongside their collaborators, forging change based on partnership, not power.
“This grant isn’t meant for researchers from the U.S. to come in and do what they think is best,” explained LeBaron. “It’s about working collaboratively from the very beginning to identify local priorities and then to support and mentor research that is relevant to the community, so we can truly say: this is meaningful. This is sustainable.”