More Children Survive Cancer Through AMPATH Efforts
For more than a decade, AMPATH partners led by Festus Njuguna, MBChB, MMed, PhD, and Gilbert Olbara, MBChB, MMed, have worked together to build a pathway to optimal childhood cancer care at Moi Teaching and Referral Hospital (MTRH) and throughout western Kenya.
The pathway includes education to improve rates of diagnosis, interventions to reduce treatment abandonment, development of treatment protocols for specific diseases and enhanced supportive care. The result has been an increase in the number of children diagnosed with cancer, reduced rates of treatment abandonment and increased survival rates.
Dr. Kaspers, Dr. Njuguna, Dr. Olbara and Dr. Vik are working together to help more Kenyan children survive cancer.
“We have not yet reached where we should be or where other countries are, but we are making very good steps and learning through the experiences that we have picked along the way,” said Dr. Njuguna, head of pediatric hematology-oncology at MTRH during a recent presentation summarizing the past decade of experience.
The proportion of all pediatric cancer patients with event-free survival rose from 19 percent in 2006-2009 to 32 percent between 2010 and 2016. “Small gains, but gains in the right direction, showed that some of the interventions that we put in place led to increased numbers, leading to increased survival and reduced abandonment, which is what we're hoping for,” said Dr. Njuguna. Gains continue to be made. For example, survival rates among those with Wilms (kidney) tumor increased from 40 percent in 2010 to close to 60 percent now. Survival rates for acute lymphoblastic leukemia (ALL) have increased from 20 percent (2010-2016) to 50 percent (2017-2020).
Dr. Njuguna and Dr. Olbara collaborate with Terry Vik, MD, professor of pediatrics and a hematologist-oncologist at Indiana University School of Medicine and Riley Hospital for Children and Gertjan Kaspers, MD, PhD, professor of pediatrics at Amsterdam UMC and head of academy and outreach at Princess Máxima Center for Pediatric Oncology at Utrecht The Netherlands, and others to improve outcomes for children.
Sub-Saharan Africa has one of the highest numbers of pediatric cancers, accounting for an estimated 18.6 percent of cases in the world. In high income countries, survival rates for pediatric cancers approach 80 percent, but in sub-Saharan Africa survival rates are around 20-30 percent in children who are treated. The most common pediatric cancers worldwide are leukemia, central nervous systems tumors and lymphomas. At MTRH, the most common pediatric cancers are acute lymphocytic leukemia (ALL), Burkitt lymphoma, nephroblastoma (kidney) and acute myeloid leukemia (AML). Rates of brain cancer diagnosis are behind what would be anticipated.
Based on population estimates, MTRH should anticipate seeing about 1,200 pediatric patients per year, but a decade ago only 100 were getting diagnosed each year. “This means that only a very small percentage of children were getting to the facility,” said Dr. Njuguna. “So when we talk about 20 percent survival, it only reflects those who actually get treatment. But if you think of the total number of children who actually have the disease, then that proportion may go significantly lower.”
A dedicated effort to educate healthcare workers throughout western Kenya has helped to drive up the number of children diagnosed to approximately 300 per year. However, this means that 75 percent of pediatric cancers are still not getting diagnosed.
Pediatric Oncology workshop
Since 2010, the team has held an annual two-day Paediatric Oncology workshop during which they discuss different childhood malignancies: how they present, how to diagnose them and how to refer patients. An average of 60 staff from health facilities in western Kenya attend.
Starting in 2020, e-learning through the Project ECHO platform allows the team to hold sessions two times per month featuring education and case presentations. An average of 34 healthcare workers attend each session. “It has really been a useful tool for us. People who are working in the counties can share their cases which we discuss and give suggestions on how to move them forward,” said Dr. Njuguna. Medical students and residents at MTRH also receive education related to pediatric oncology. Continuous medical education sessions at county hospitals organized by the Burkitt Lymphoma Project and weekly parent education sessions also increase community knowledge.
More than half of the patients between 2006-2010 abandoned treatment. The top reasons cited by Kenyan parents of childhood cancer patients for abandonment of treatment are financial difficulties, inadequate access to NHIF (insurance) and transportation difficulties. The pediatric cancer team now helps families with NHIF registration and has worked with individual and corporate philanthropies to support some costs. They have also enhanced counselling and patient education and worked to create a cohesive message emphasizing the need for treatment and that treatment gives the patient the best chance. From 2010-2016 the rate of abandonment dropped to 28 percent.
Dr. Njuguna also lauded the work of the dedicated pediatric oncology nursing team who stay with the unit long-term. “Supportive care is very important in treatment and cure for childhood cancer,” he said. “The nurses, with the experience they gain, are very vital. Aspects of supportive care include managing fevers and vomiting due to chemotherapy and nurses know what interventions to provite even when the doctor is not present in the unit.” Princess Máxima Center pediatric oncology nurses from the Netherlands travel to MTRH for two weeks per year. A one-year pediatric oncology training is awaiting approval by the Nursing Council of Kenya.
Another important initiative contributing to the success of the unit is collecting minimum patient data to be able to develop and refine treatment protocols and author retrospective reviews. “Of course, this also helps other people who are working in sub-Saharan African countries and other low-income countries to be able to learn from our experiences and improve in their own facilities,” said Dr. Njuguna.
Dr. Vik praised the impact of the data collection efforts, “I think the amount of data that comes out of MTRH and Moi University through this program is unmatched anywhere in the world among low- and middle-income countries. And I think that's a tribute to the dedication of all the Kenyans working on that goal.”
Infrastructure at MTRH to diagnose and treat pediatric cancers also continues to grow. Radiotherapy services began last year, and most chemotherapy drugs are reliably available. Immunohistochemistry, flow cytometry and FISH have improved diagnosis.
In 2022, Dr. Njuguna and Dr. Olbara became the first graduates of the AMPATH pediatric oncology fellowship. They are both graduates of Moi University School of Medicine. Dr. Njuguna met Dr. Vik more than 20 years ago during his MMed studies when he spent time at Riley Hospital in Indianapolis. Dr. Njuguna completed a PhD at Vrije Universiteit Amsterdam (VU) in 2017 and Dr. Olbara is one of five current Kenyan PhD candidates in pediatric oncology with Professor Kaspers as promoter.
Looking forward, the pediatric oncology team hopes that PhD research projects will help them with a childhood cancer awareness project, prospective data collection on treatment and outcomes, Vincristine/ Doxorubicin studies, Burkitt Lymphoma outcomes, supportive care (infections/nutrition) and survivorship.
On a national level, the Kenya National Cancer Institute has created a Paediatric Oncology working group. The team at MTRH hopes to create a closer collaboration with Kenyatta National Hospital as well as continuing to raise awareness and advocacy with their current partners.
“For us, improving the cure rates of children with cancer is as rewarding to achieve in Kenya as in the Netherlands. The success illustrates that this collaboration really is fruitful. It's really also the collaboration that makes it powerful,” concluded Dr. Kaspers.
Pediatric oncology efforts have been supported by the National Institutes of Health, National Cancer Institute, AFAS Foundation, World Child Cancer, Faraja Cancer Support, Alex’s Lemonade Stand Foundation, Takeda, Hope for Cancer Kids, and Indiana Hemophilia and Thrombosis Center.