A grant from the Burkitt Lymphoma Fund for Africa will help UNC Lineberger researchers develop educational materials to improve communication between patients and providers – all with the goal of helping patients stay in care throughout their treatment.
University of North Carolina Lineberger Comprehensive Cancer Center researchers have been awarded a two-year, $50,000 grant to develop strategies for helping children with a common pediatric cancer in Malawi stay on treatment, which the researchers say is critical to improving survival rates.
Burkitt lymphoma is a common childhood cancer that is often cured in the United States, but the survival rate in Malawi for children with Burkitt lymphoma was 29 percent at 18 months, according to a recent study. The researchers will use the grant to develop educational materials and a tablet application to improve communication between patients and providers – all with the goal of helping patients stay in care throughout their treatment.
“Treatment abandonment is a huge issue for children with Burkitt lymphoma throughout Africa, and is one of many reasons they do poorly relative to children in high-income countries,” said UNC Lineberger’s Satish Gopal, MD, MPH, cancer program director for UNC Project-Malawi. “This proposal will develop innovative, culturally appropriate education materials and retention systems using mobile technology to try and address this.”
Previous studies have found there’s a lack of understanding about Burkitt lymphoma, even after patients have received confirmation of the diagnosis, counseling and initiated treatment. Families receive misinformation in their communities, which contributes to their decision to stop treatment, the researchers have found. They also reported that there is an overall lack of understanding about treatment side effects, including how to manage side effects at home and when to seek help.
“The main recurring barriers to retention include lack of patient education, leading to misconceptions about Burkitt lymphoma diagnosis or treatment, logistical barriers such as transportation costs because our patients often travel more than five hours on a mini-bus to the hospital for treatment, and lack of continued communication and support of patients when home,” said Kate Westmoreland, MD, a fellow in the UNC School of Medicine Department of Pediatric Hematology/Oncology. “We hope that this improved emphasis on patient education and additional layers of support through the use of mobile phones will improve retention in care and ultimately outcomes of our patients.”
The research intend to develop culturally appropriate comics that will tell the story of a child with Burkitt lymphoma, and how to overcome challenges of the disease. For patients or family members who can’t read, they are also planning to develop an interactive tablet computer application that will speak Chichewa and use pictures. The tools will teach people about this particular cancer, its causes, the treatments, common side effects, and the importance of sticking to prescribed care. These comics will be given to patients and their families at diagnosis as a reference for home use, and the tablet computers will be used by providers to educate patients in the clinic. Additionally, these educational materials will ultimately be shared with groups across sub-Saharan Africa so they can be translated, adapted, and implemented in centers throughout the region.
They will also make sure all patients on active treatment have a mobile phone throughout chemotherapy. They will send appointment reminders via the phone, call patients who have missed appointments, provide transportation funding, and answer questions through a dedicated 24-7 answering service. This 24-hour mobile phone will also be able to provide a consultation service to support providers in rural clinics who see our patients on the front lines, to assist in triage, medical decision making, and management.
The researchers believe the work will lead to improved retention throughout the continuum of care, and better outcomes for patients with Burkitt lymphoma in Malawi.