Many childhood cancer cases in Kenya go undiagnosed and there exist significant differences in survival rates compared to high-income countries. A new platform focused on knowledge sharing is empowering local healthcare practitioners to achieve better outcomes.
Many childhood cancer cases in Kenya go undiagnosed. A new platform is empowering local healthcare practitioners. Photo: Nappy Studio
Ken* did not live to celebrate his fifth birthday. After long periods of being in and out of hospital, being treated for various health problems, it eventually emerged in 2018 that he was suffering from neuroblastoma, a cancer that develops in nerve tissue. At the time of his death in late 2018, Ken was the first of two children of a young couple living in Igembe North, a rural agricultural region in Meru County, Kenya.
Childhood cancers in Kenya are generally characterised by under- and late diagnosis, leading to poor health outcomes and increased child mortality. In children, cancers are difficult to diagnose because their symptoms often mimic other common childhood illnesses such as fever, fatigue, low blood level, and a lack of appetite. The disease is a most pressing concern in this east African nation where an estimated 3,000 childhood cancer cases occur annually. Many others are not diagnosed and these children do not survive.
For children like Ken, the diagnosis often comes at the very last stages of the disease. Consequently, despite 80% of childhood cancers being survivable, there exist significant differences in survival rates—more than 90% achieved in most high-income countries, but between 10% and 30% in Kenya.
Against a backdrop of poor outcomes in childhood cancer care, in January 2020 the Academic Model Providing Access to Healthcare (AMPATH) and Project ECHO (Extension for Community Healthcare Outcomes) launched the AMPATH oncology ECHO platform to build a pathway to optimal childhood cancer care at Moi Teaching and Referral Hospital (MTRH) and throughout western Kenya. It currently spans over 15 counties in Kenya.
Children in western Kenya are particularly at risk from Burkitt lymphoma, a deadly, fast-growing cancer that often develops where malaria is also prevalent. Other common types of childhood cancer in Kenya are blood, eye, and kidney cancers.
Since the AMPATH oncology ECHO platform launched, the number of children diagnosed in western Kenya by program participants has increased from 85 cases annually in 2019 to more than 300, including diagnosis of rare cancers such as rhabdomyosarcoma and bone cancer.
Moving knowledge for better health outcomes
Project ECHO is a virtual health education and mentoring program that brings together experts, practitioners, patients, and other participants who all share experience, teach, and learn together. An ECHO session is a real-time virtual tele-mentoring session held via video conference that connects specialists (usually at a teaching facility) to learners (usually at peripheral healthcare facilities).
The project was founded in New Mexico in 2003 by Dr Sanjeev Arora, and has since been used to build capacities to combat infectious diseases such as HIV and TB, and non-communicable diseases such as hypertension, cancer, and diabetes. It also aims to support maternal and child health, and improve nutrition and food security.
ECHO sessions connect experts concentrated in urban areas to healthcare workers in rural areas. Photo: Project ECHO
The ECHO model refers to a learning framework that uses a virtual platform to promote “co-learning, tele-mentoring, and knowledge sharing,” according to Dr Caroline Kisia, the Nairobi-based ECHO Africa director leading the growth and development of the ECHO model on the continent.
The model is built on Zoom and is available for free for all end users. Interested health facilities or academic institutions receive the license to run the ECHO sessions, along with the free Project ECHO Resource Library. This is a repository of verified information—guidelines, templates, videos, research papers, presentations, and more—that ECHO partners can access to help run their sessions.
Inspired by the way clinicians learn from medical rounds during residencies, the ECHO model leverages videoconferencing technology to connect experts, who tend to be concentrated in urban areas, to healthcare workers in rural areas.
The ECHO model leverages videoconferencing technology to connect experts who tend to be concentrated in urban areas to healthcare workers in rural areas.
This form of capacity-building promotes an interactive learning environment built on an all-teach-all-learn model: Trainers or experts teach local health providers, but they also learn from local knowledge and from the frontlines of healthcare.
“The project also taps into African diaspora and their expertise to help their communities back home,” says Kisia. The first use of the ECHO platform in Africa started in 2015 in Namibia to strengthen capacity for HIV and AIDS treatment; it has now been integrated into the Ministry of Health.
“The design of any ECHO model depends on available resources. An ECHO platform can start on a laptop and learners can then log in from anywhere. All they need is internet connectivity on their mobile phones,” Kisia says.
Sub-Saharan Africa accounts for about 15% of the global population and yet, according to WHO figures, it is home to an estimated 25% of the global disease burden. Sub-Saharan Africa has 1.3% of the world’s trained personnel. This has necessitated the application of low-cost and high-impact learning models to strengthen service delivery in resource-strapped settings for hard-to-reach, underserved populations. In Kenya, structured, continuous virtual learning and mentoring for health personnel is an uncommon approach. ECHO is one of a kind.
The model has proven to be highly cost-effective. Kenya’s Ministry of Health, through the National AIDS and STI Control Programme, compared the cost of using ECHO versus traditional in-person meetings to disseminate HIV/AIDS guidelines; they found that it cost them KSh106,000 (US$820) per participant for the county-to-county in-person meetings, compared to just under KSh2,700 (US$21) per participant using the ECHO model. They also managed to roll out the guidelines in one month using ECHO, compared to the one year it previously took to roll out the previous guidelines.
Re-inventing traditional telemedicine through hub-and-scope model
Dr Tyler Severance is a paediatric haematologist oncologist at the University of Missouri in the US and a trainer with the ECHO platform.
“When we think of traditional telemedicine, the engagement historically was between a doctor and a patient. So, during a virtual encounter, you were helping one patient. ECHO expands that telemedicine to be a broader telehealth education platform,” he says. “For every ECHO attendee, the goal is to improve knowledge and impact every single patient.”
Each ECHO session includes an expert-led section followed by an opportunity for healthcare professionals to discuss experiences they have had in the field. Photo: Project ECHO
Severance says each individual session has two components. The first is a structured 15–20 minute section delivered by the expert, which is focused on best practices and standard of care. Then, the learners—who are also practicing doctors, clinicians, nurses, and other healthcare workers—present cases they have dealt with or discuss experiences they have had in the field. This facilitates a two-way discussion, and this makes up “the majority of the learning and the dialogue,” says Severance.
ECHO is built as a hub-and-spoke system. The hub, in this case AMPATH, is the knowledge centre where the experts or trainers are; the spokes are learning sites all over the country and region. The model promotes collaborative problem-solving, emphasising evaluation and monitoring outcomes to enable continuous adjustments based on the challenges on the ground.
Insights into ECHO’s learning, monitoring model
Dr Patricia Odera-Ojwang is a consultant paediatrician based in Siaya County in western Kenya who has been practising medicine for nearly 15 years. She first started participating in HIV ECHOs in 2019 as a learner, and later in sessions on paediatric haemato-oncology abnormalities as a learner. She says that children can suffer from cancer symptoms from as early as birth, as some children are born with congenital tumors.
“There are many challenges around childhood cancer care that may contribute to under-reporting. Children are dependent on adults for care and they may be unable to efficiently communicate their symptoms, especially in younger non-verbal children and infants. Furthermore, cancers in children present so atypically. Western Kenya is a malaria-endemic region and many of the cancer symptoms are also common in malaria cases. If the health care provider is not keen, they may not suspect a cancer case until it is too late,” she says.
In the absence of adequate resources to make a diagnosis, Odera-Ojwang says medical education is critical to facilitate accurate diagnosis, which is vital for successful treatment. She emphasises that ECHO is a game-changer as it upskills healthcare workers including doctors, nurses, clinicians, and nutritionists with critical, and potentially lifesaving, information.
“A child who is very pale, is losing weight, tired most of the time, misses school most of the time for being unwell, requires blood transfusion, and has this swelling,” she says, “could be having malaria, yes—but they could also be having cancer.
“A child who is very pale, is losing weight, tired most of the time, misses school most of the time for being unwell, requires blood transfusion, and has this swelling could be having malaria, yes—but they could also be having cancer."
"You have to approach these cases with a high index of suspicion to find what other issues lurk beneath,” Odera-Ojwang says.
Capacity building anchored on impact assessment
According to ECHO’s Africa director, ECHO currently has 290 active programs in 29 African countries. Sessions are conducted every other week or every month, with participants from 51 different countries. Overall, there are 155 hubs that conduct ECHOs. The project has thus far recorded 227,000 unique participants and 690,000 attendances across the continent.
Globally, cancer causes more deaths than HIV, TB, and malaria combined. Approximately 70% of the global cancer burden is in low- and middle-income countries (LMICs) like Kenya. Nearly 30% of cancers are curable if detected early. Severance stresses that ECHO platforms are not just about learning and mentoring for rural and underserved areas, but also for impact assessment: “For every ECHO session, we can directly correlate attendance with an improvement outcome. For instance, for every five sessions attended, that is one extra child per 100,000 who is diagnosed with cancer.”
“For every five [ECHO] sessions attended, that is one extra child per 100,000 who is diagnosed with cancer.”
What is especially encouraging is that early mortality rates are improving slowly. “Children are doing a better job surviving the first few months of diagnosis and treatment, and the current survival rates are about 50-60%,” Severance says. “For every two children that are diagnosed, at least one will go on to survive and survive throughout childhood into adulthood.
“For every two diagnoses, you are saving one life.”
*Name changed at family’s request
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