Prof. LeBaron's Nepalese research partners with whom she's developing an application for cancer pain
With an NIH grant, prof LeBaron and global health colleagues, will develop a bedside app to help cancer patients globally to get the pain meds they need.

An icon of an elderly person's walker to signify scholarship in aging end-of-life and palliative care. An icon of a clipboard to signify scholarship in symptom science. University of Virginia nursing professor Virginia LeBaron had been collaborating with a team of palliative care clinicians in Nepal since 2004, so her decision to work with them on a new project that could ease cancer pain through the creation of a mobile app was an easy one.

LeBaron hopes that the work – a nearly yearlong collaboration between UVA’s Center for Global Health, UVA’s Center for Survey Research, undergraduate and graduate students and the team in Nepal – will soon pay dividends for the people of Nepal.

“This has truly been a team effort,” LeBaron said.

The app will be valuable to cancer patients by tracking whether their health care providers have followed guidelines safely and effectively. “If we have a better understanding of the barriers to following pain-management guidelines that may be context-specific, then we can do a better job of designing tailored interventions,” LeBaron said.

UVA Today caught up with LeBaron to learn more about the project.

Q. What were the aims?

A. The primary aim of this grant is to design a mobile application that can scale-up implementation of locally developed cancer pain management guidelines and support health care providers in managing cancer pain.

The Nepalese Association of Palliative Care created pain management guidelines based on World Health Organization guiding principles and adapted them to the Nepalese context, but they are currently paper-based and this has limited uptake.

The second aim was to help strengthen sustainable research capacity within Nepal. This aim is being achieved through mentorship and collaboration between the UVA and Nepal teams regarding all aspects of the research process – from grant planning and submission, survey and app design, data collection and analysis, dissemination of findings to overall grant management – as well as structured opportunities for specific skill development and helping to establish the infrastructure within NAPCare so the Nepal team can initiate and lead future independent research projects.  

Q. What were some of the things you were trying to ascertain in the survey?

A. The main goal of the survey was to help inform design of the mobile application. The survey was administered at four diverse cancer care settings – a public cancer hospital, a public general hospital, a private cancer hospital and a free-standing hospice. The survey collected data from nurses, physicians and pharmacists regarding demographics; knowledge and attitudes in managing cancer pain; perceived barriers to cancer pain management at individual, institutional and cultural/country levels; awareness of the NAPCare pain management guidelines; barriers to smartphone use and desired features of the proposed mobile app.

Q. What were your findings regarding the Nepalese medical providers’ practices?

A. We are still analyzing the survey data, but some initial results are of particular interest. For example, while almost all respondents indicated they have, and use, a smartphone on a daily basis, some nurses are not permitted to use their personal phones in the hospital, while physicians are not bound by this restriction. This is an important finding and means we need to think carefully about how nurses may, or may not, interact with a mobile app in their specific clinical setting and explore possible alternative ways to engage nurses with the pain management guidelines.

Also, we are learning important information about barriers to cancer pain management that are contextual to different types of care settings. For example, some types of pain medication are more readily available in the private versus public sector, and the roles of different providers may also vary based on the setting.

Importantly, overall, we found that providers are highly committed to managing cancer pain and see it is an important aspect of their job.

Q. What were some of the challenges you faced in not only trying to conduct the survey, but in teaching research practices to the Nepalese research team?

A. The research team in Nepal is an incredible group of dedicated nurses and physicians. They have been highly engaged in the entire process, particularly in helping design the survey questions and administering the survey at the four cancer care sites. Specific challenges in mentoring the Nepalese team involve access to resources.

For example, certain data-analysis software is extremely expensive and annual licenses are cost-prohibitive. Relatedly, relevant journal articles may not be available free-of-charge unless the individual is part of a university that has the funding to retain a subscription to the particular journal.

For the duration of this grant, we can work around many of these barriers, but it raises an important question regarding long-term, sustainable access to resources for individuals who are striving to conduct research in low- and middle-income countries.

Probably the biggest challenges in conducting the survey involved incentivizing clinicians to take time out of their busy day to complete the survey, recruiting a diverse sample of respondents and ensuring that questions were correctly understood by participants.   

Q. There are so many smartphone apps on the market now that do all sorts of things. What do you think will make your app unique? How will it be valuable to cancer patients? And what is the timetable for its release?

A. This app is unique for a few key reasons. For one, many clinical resources, such as pain management guidelines, are developed with a Western-oriented perspective for resource-intensive settings. When these resources are simply “exported,” they typically don’t work well because they are a poor fit with the realities of clinical practice in low- and middle-income countries like Nepal.

The NAPCare pain management guidelines are unique in that they are based on sound science, but have been developed by local clinicians and adapted to the available resources and local context. In other words, they are ‘home-grown’ and for this reason we believe they are more likely to be accepted – and effective.

Also, our app will allow us to track when the guidelines are followed – but importantly when they are not, and why not. If we have a better understanding of the barriers to following pain-management guidelines that may be context-specific – for example, related to institutional resources, stigma regarding a cancer diagnosis, or type of provider and how much training they’ve had – then we can do a better job of designing tailored interventions.

Our app will be valuable to cancer patients in that it will support the work of their health care providers in guiding safe and effective pain management. We are discussing future versions that will include a patient/caregiver-facing component. We hope to have beta testing versions of the app completed by spring 2020.

Q. What was it like collaborating with the Center for Survey Research on this?

A. It has been an amazing and productive partnership! I feel like The Center for Survey Research is a hidden gem at UVA. The center, and [Director] Kara Fitzgibbon in particular, have been instrumental in helping us design and format the questions, and provided expert guidance regarding how to optimally administer the survey and analyze the data. We simply couldn’t have done it without their help.