Pediatric Sarcoma in Central America: Outcomes, Challenges, and Plans for Improvement
By Dagnie Howard
Dr. Paola Friedrich-Medina, MD is an attending physician at Dana-Farber/Children’s Hospital Cancer Center and an Instructor of Pediatrics at Harvard Medical School. She also serves as the faculty advisor for Student GO! In her recently published article “Pediatric sarcoma in Central America: outcomes, challenges, and plans for improvement” (Cancer, 2013), Dr. Friedrich-Medina and her team focus their research efforts on pediatric sarcoma patients from 7 different centers across Central America. The study took a retrospective look at patient outcomes in order to gain a better understanding of why children with cancer in low and middle-income countries have inferior outcomes when compared to their counterparts in high-income countries. The results of the study showed that difficulty with upfront treatment efficacy, high rates of metastases at presentation (ranging from 21% for soft-tissue sarcoma to 39% for Ewing’s sarcoma) and high rates of treatment abandonment (23%) all contribute greatly to the poor survival of these children – only 31% at 4 years. These results suggest that in order to improve these outcomes more effort needs to be put into initiatives for early diagnosis, improvement of multidisciplinary care, as well as psychosocial support for the children and their families.
What made you become interested in global health? And what made you become interested in global oncology in particular?
I am Mexican, German, and Puerto Rican. My family often jokes that we are “children of the world.” I was born in Mexico but was raised in Puerto Rico and travelled to Germany often. Taking my desire to work in the health care field globally was only natural for me. My passion for pediatric oncology also stems from personal experience. I was diagnosed with cancer as a child living in Mexico, and if it weren’t for my parents’ ability to bring me to the U.S. for treatment, I maybe wouldn’t be here today.
While I have wanted to be a pediatric oncologist since I was a teenager, I struggled with how to combine that passion with my passion for global health. As a resident I did an overseas rotation in Lesotho (Southern Africa), where HIV/AIDS, malnutrition, and other infectious diseases are the priority. I often wondered, “How would I deliver oncology care here?” As a start and thanks to the work Carlos Rodriguez-Galindo, my mentor, had already done in Central America, I decided to concentrate on how to address pediatric solid tumor care in somewhat less “resource-constrained” environments and middle-income countries in particular.
Can you describe a few of the global oncology initiatives that you’ve been involved in thus far?
I work with Carlos Rodriguez-Galindo and many colleagues from Central America to coordinate a pediatric sarcoma group. We focus primarily on development and oversight of pediatric rhabdomyosarcoma and osteosarcoma protocols, but discuss other solid tumors and rare tumors as well. We meet on a weekly basis with pediatric oncologists on site using web-conferencing software to discuss cases and to provide them with treatment suggestions and relevant literature. The goal is to foster their continuing education through case-forums and group-learning.
We also work with a relatively new center in Santiago, Dominican Republic. They are still working out many of the basic challenges of improving standardization and effectiveness of pediatric oncology care in a context in many competing priorities at the level of the health care system. Our twining program involves providing essential technical support in clinical care, nursing initiatives and education, chemotherapy safety, strategic planning, and data management, among other activities.
How did you become involved with the Central American Association of Pediatric Hematologists and Oncologists (AHOPCA)?
I was finishing my first year of pediatric oncology and was interested in international work when I met Carlos Rodriguez-Galindo. He had arrived to Dana-Farber a few months earlier and was already involved with AHOPCA. As a mentor, Carlos immediately got me involved. Within three months I was working closely with the group, coordinating the agenda, and presenting at the meetings.
Can you explain what a “twinning” program is? What role do you see twinning programs having in global cancer care?
A “twinning” program is a long standing relationship (not just a 2 or 3 year project) where a hospital here in the U.S. is “joined at the hip” with a hospital in a low or middle income country. In this partnership clinical staff from the U.S. and from abroad should expect to learn from each as they figure out how to improve care in their setting. In brief twinning programs are a mechanism to provide technical and financial support to improve clinical practice, build multidisciplinary care teams, access expert opinion, escalate staff education, guide strategic planning, increase accountability, and diversify funding sources, among others. However, in my opinion, one of the biggest roles the U.S. hospital plays is to serve as leverage for the partnering hospital. The goal is to make the system acknowledge their presence, to give them a voice, and to provide support for the small number of people who are trying to do a lot for an underserved community. There are many ways academic institutions in the U.S. can get involved with delivery of care abroad. However, in my opinion twinning programs are the most sustainable and effective way.
What do you see as the main challenges involved in practicing oncology in Central America?
In most countries, the majority of patients seen at public hospitals are very poor. This not only creates a barrier for treatment cost, but creates barriers in education and literacy as well. Many patients are unwilling to acknowledge cancer or accept treatment. This is most obvious for solid tumors that require drastic surgery, such as amputation.
The level of the center is also a factor. Not all centers can provide each type of care necessary to treat a patient with cancer (for example, they may have surgeons but not radiation oncologists). There needs to be more training and specialization if we are to provide the multidisciplinary care needed for effective treatment. We also need to change the environment to be more accepting of this type of multidisciplinary care. Communication and collaboration are key.
You mentioned that Costa Rica is the only country included with a national cancer registry and that your cohort may have missed at least 1/3 of pediatric sarcoma patients. How would this have influenced your study findings?
The pediatric sarcoma incidence reported in Costa Rica is lower than in most high-income countries and some low-and-middle income countries with registry data. Therefore, in other countries, we may have underestimated the expected number of patients and a larger number of patients than estimated by us are unaccounted for. Taking Guatemala as an example, we know we analyzed the larges and perhaps only center comprehensively delivering pediatric sarcoma care in the country. At least in the public sector, we have to assume that patients that are not accounted for (by reaching the center) don’t receive treatment and die of their disease. Therefore, the larger the gap (of missed patients), the larger the possibility the survival estimate we obtained for the center greatly overestimates survival at the national level. This highlights the need to educate health providers across the country about cancer so that these patients are referred for care to the right place.
There was a 23% treatment abandonment rate within the patients in your study. Why do you think treatment abandonment rates are so high in low and middle-income countries? What do you think are the major cultural factors influencing this? Why was the abandonment in Costa Rica (just 1%) dramatically lower than in the other countries studied?
The overall treatment abandonment rate is lower (5-10%) if leukemia and lymphoma are included in the numbers. I believe, the proportion is higher for solid tumors and pediatric sarcomas in particular, primarily because the treatment for late-stage disease often involves drastic and/or mutilating surgery. Many families struggle with the idea of amputation, especially because in many of these countries the loss of a limb would mean a child would be seen as an outcast (and prosthesis inaccessible due to cost). This is on top of the issue of understanding and accepting the implications of cancer as a diagnosis.
In Costa Rica the context is somewhat different. National health care supports treatment of cancer, including limb sparing procedures. The education and literacy levels are also much higher, so parents are more likely to accept the diagnosis and rationalize the treatment knowing that the alternative is death.
Throughout the paper you discuss the relative success in global pediatric leukemia treatment compared to the issues seen with pediatric sarcomas. You mentioned that this is due to the complexity in treating sarcomas. Can you elaborate on this more?
When treating a leukemia or lymphoma the oncologist is the true leader of the team and can “run the show” using chemotherapy, controlling infections, etc. When treating a sarcoma you need a whole team of skilled and willing doctors including a surgeon, radiation therapist, pathologist, and oncologist, plus psychosocial providers who are willing to help with the family and prevent abandonment issues. Overall the treatment can be disjointed and confusing on top of all of the other social issues involved.
Where do you see the field of global cancer care going in the next 10 years? What are the major changes you’d like to see happen?
More and more pediatric oncology centers are developing worldwide in a direct response to need. This as a result of two main events: pediatric cancer becomes more visible once health care systems improve and pediatric cancer can be a strong philanthropic drive, even in lower-income settings. What I would like to see is for more academic institutions to get involved and for more twinning programs to be established. We can’t rely on just a few centers like Dana-Farber and St. Jude getting involved. The more academic hospitals are involved the better we will be able to address the high burden of pediatric cancer in lower-income settings.
Do you have any advice for young doctors or medical students who are interested in global oncology?
As with any other field, be persistent. When I started people said I was crazy. But if you are passionate you should be innovative and relentless. Keep doing good work and don’t ever stop trying to get people to listen.