Kristin Alves is a T-32 postdoctoral training fellow at OrACORe. This February, she left on an eight-week trip to Uganda to study gluteal fibrosis, an unusual disease with a high prevalence among children in parts of the country. Kristin talked with me about the unanswered question that inspired her project, and the joys and challenges of global surgery research.
ECL: To start, can you give us the elevator pitch for your trip? What are the goals, and what do you hope to learn?
KA: Sure. We’re dealing with two diseases found in Uganda—gluteal fibrosis, and an acute flaccid paralysis of the lower extremity. About 30% of kids seen with musculoskeletal problems in Uganda have one of these two diseases. Fibrosis means that fibrous bands form within the muscle, which can limit function. In kids with gluteal fibrosis, the sure sign is that they can’t crouch and keep their knees together, and they have trouble running and moving around, too.
We’ll be conducting a qualitative study to examine the question, why do we see gluteal fibrosis in Uganda? It’s quite puzzling because it’s not seen in neighboring countries. We suspect that the cause is quinine injections, which are given for malaria and injected into the buttocks. Now, that treatment is not recommended by WHO, and we’re not sure why these injections are being given. So we plan to talk with doctors, pharmacists, nurses, etc. to understand these injection practices.
We want to understand if the quinine injections are the cause. Using quinine in this way isn’t common elsewhere. But there are other places with gluteal fibrosis, including a huge cluster in China. Everyone who has studied those incidences blames the benzyl alcohol that is present in injections of penicillin used in China.
ECL: It’s a fascinating question. Other than the research questions themselves, what do you see as the big “unknowns” going into this trip?
KA: When doing interviews like these, it’s always a question whether people will talk to you, and whether they will be forthright and truthful. Particularly with an American team coming into a developing country, there is a fear of being exposed as inferior or as not practicing right.
In addition, you have to think about the political climate and unrest. Just this fall there were dozens of people killed when a separatist militia was trying to seize land in Western Uganda, trying to form a new republic based on a tribal kingdom.
When you travel someplace with problems like those, you have to be on your toes, you know? Luckily there are emergency assistance and alert programs, like Partners TravelSafe.
ECL: Are there plans underway for any follow-up studies or further research into this question? How did you decide on this particular approach?
KA: We do have another study planned, a case control study that will investigate whether there is a difference in the number of injections between children who do and do not have gluteal fibrosis. But that study relies on cluster sampling, and we couldn’t get that set up in time for this trip. So the quantitative side will have to wait for next fall.
Which brings me to one of the key lessons in all this…You’ve really got to be flexible when you do global surgery work. In fact, setting up a global surgery trip has taken years and I’ve had to change courses several times. Fortunately I found myself connected to a network of so many great surgeons and researchers. Dr. Coleen Sabatini at COUR, the global branch of POSNA [the Pediatric Orthopaedic Society of North America] became a wonderful mentor. As I learned about her project, I realized how truly worthwhile it is. There are all these kids with gluteal fibrosis, and no one is paying attention to these kids and no one is paying attention to their disease.
ECL: And your ability to change course when necessary led you to the current study, which could answer a really key question. Before we go, what else would you like orthopedic surgeons and researchers to know about your work?
KA: That global work is worthwhile. These trips have been some of the most valuable experiences I’ve had. In a developing country where surgery is not as advanced as here, you really get to live the history of orthopedics. And the doctor-patient relationship is key too—it takes you back to that pure helping relationship, which is what we’re all in it for in the first place.
You know, people like to say about orthopedic surgeons here that we save lifestyles, not lives. But that’s certainly not true in Uganda—if you’re injured there, you’re in a tough place. They don’t have disability or other supports. We’re able to give them their lives back.