Dr. Doreen Terry Karimi Mutua was winding down her pediatric residency at Kenyatta National Hospital in Kenya, just two weeks or so out from exams, when she unexpectedly discovered a new calling.
At the time, she was working to become a pediatric gastroenterologist. She’d always been interested in pediatrics, and she’d bonded with a team of gastroenterologists both before and during the residency. But a visiting professor’s stop in Kenya on his way from the United States to Ethiopia changed everything.
That professor was headed to Ethiopia to set up a pediatric oncology training program. “He came to the university and said, are there any students who maybe I can teach,” Dr. Mutua remembers. “He changed my life, honestly, because he kept teaching us and giving us all these lectures. And he would teach us different topics in oncology. And he would tell us about his patients and how he had patients who are now going into medical school, and some of them were even doctors. Others had gone on to get married.”
As she listened, Dr. Mutua thought back to the rotations she’d done through the oncology unit in Kenya. She thought about the challenges those patients had faced — gathering the money to pay for treatments or facing medicine stockouts. A question kept ringing in her head: “How is it that patients in America are able to survive childhood cancer? And why is it that children in Kenya don’t survive?”
It was then that she decided to make a change. “I actually looked at it and said, ‘There’s nothing for me to do in gastroenterology. … Let me go change the world for children with cancer.’”
The moment inspired Dr. Mutua to take a new path. She would pursue a pediatric hematology/oncology fellowship at Jimma University in Ethiopia. She would become a consultant pediatric hematologist/oncologist at Gertrude’s Children’s Hospital in Nairobi, Kenya. And in 2021, she would earn a spot in the third cohort of St. Jude Global Scholars.
With each step on this path, the questions continued to drive Dr. Mutua forward. Why was there such a discrepancy in survival rates? Why weren’t more children in Kenya surviving their childhood cancer diagnoses?
“Having gone through my training, I now know why,” she says, pointing to challenges such as delays in diagnosis, lack of access to evidence-based protocols, and difficulty obtaining appropriate quantities of chemotherapy medications.
To help address the first hurdle — the problem of delayed diagnosis — Dr. Mutua has set out to raise awareness of childhood cancer and its early warning signs, teaching front-line health workers, making appearances on radio and television stations, and writing articles in local newspapers. At the hospital level, Dr. Mutua and her colleagues have worked to establish a fund to support children in need of diagnostic testing, raising money through events such as charity golf tournaments.
“Those are some of the initiatives. I know it’s still a drop in the ocean, but I think it’s a fair start,” she says. “… Even in my practice currently, now I can be able to see patients who survive various tumors and cancers, and they’re going on back to their school, going on to do different things. I truly feel that this is what I was meant to do; I just didn’t know it.”
With the Global Scholars Program, Dr. Mutua says, she “stumbled on a gold mine.” A colleague, Dr. Diriba Fufa Hordofa, had recommended that she apply — she remembers getting that call from him as she was out grocery shopping — and her experience within the program has since helped shift her perspective to a systems-wide approach.
“I’m able to zoom out and zoom in” on different challenges, she says. Take, for example, the question of why patients are missing appointments. “You might just take that and think, ‘Oh, maybe because they just don’t want to come.’ But if you [step] back and … stay curious about it, and keep looking and exploring, then you’re able to see what are some of the causes, what are the loops, what are some of the things that you need to address. And it might just need a few different interventions in different points in the health system, and you’re able to actually change a number of outcomes.”
That approach is at the heart of Dr. Mutua’s Scholars Project — a mixed methods study of the factors that influence the health-seeking behaviors of caregivers of children with cancer in Kenya.
This issue has been close to her heart for a while now, the product of countless conversations with caregivers in hospitals throughout the years. “A lot of these caregivers are really seeking help very, very early on,” Dr. Mutua says, “but the health system is disappointing them.”
Her Scholars Project seeks to quantify the caregivers’ initial experience — that first touchpoint with the greater health system. She will use surveys to better understand who these caregivers are and what influences their health-seeking behaviors. From there, interviews and focus groups will help flesh out Dr. Mutua’s understanding of how the caregivers interact with these systems.
Dr. Mutua also hopes to compare what she’s seeing — in relation to cancer — with the health-seeking behaviors surrounding other illnesses, such as pneumonia and diarrhea.
“I’m very, very excited to see how we can bring this research to action,” she says. “At the end of the day, what I hope to deliver [is the ability] to identify some of the barriers to health-seeking behavior of our childhood cancer caregivers, and [then design] strategies that will encourage them to bring their children to the health system much earlier.”
And looking back on her journey so far, from that initial switch from gastroenterology, to her two years with St. Jude, she says: “I found my purpose. … But Global Scholars has now given me a platform to be able to solve issues and problems for my patients, and make sure I change their outcomes as I set out to do in the first place.”