Tuesday, November 28, 2017

Uganda Be Kidding Me: Iatrogenic Pediatric Orthopaedic Injuries in Kumi, Uganda Part 2

Kristin Alves
Resident in Harvard Combined Orthopaedic Surgery Program

Uganda Be Kidding Me: Iatrogenic Pediatric Orthopaedic Injuries in Kumi, Uganda Part 2

In traveling and working in Kumi, Uganda, I have learned that to be able to really help we must not work in silos.  To explain why you would need to start with my initial hypothesis and what I thought I was going to have to address to help children with gluteal fibrosis and post-injection paralysis.  Now, weeks in, I realize that the problem is much bigger than two pediatric orthoapedic disabilities.  Solving these problems will take a collaboration between many parties including the ministry of health, the practitioners, surgeons, nurses, volunteers, etc.
To understand what I have discovered during my research, you need to understand the overall context of Uganda’s state of healthcare and economy and the political environment. The Idi Amin era in the seventies was characterized by corruption, human rights abuses, political repression, mass execution, and gross economic mismanagement.  While the country came to relative peace with President Museveni in 1986, there are unaddressed legacies of the conflict with great disparities in income, wealth, and health care seen in Uganda.  This has created vast disparities in social determinants of health with unequal development, inequitable access and distribution of power and resources.  In addition, the “president” has been in power for over 3 decades and has continued to focus on military development to ensure his continued power and has continued to decrease the health care budget despite an overwhelming need for financial support.  Understanding this history is essential to understanding the instability of the country and the disparities in care delivery that have developed. 

Uganda’s population is estimated at 28.25 million with 50% being children aged 0-14. 
Throughout the large pediatric population there is a high prevalence of disease and much effort has been put in the treatment, prevention and control of many of these diseases. One of the diseases that is endemic in this young population is malaria.  Commonly in East Africa infants and young children who develop high fevers are thought to be suffering from malaria. One of the medications that has been frequently used in recent years for malaria is Quinine. The overwhelming “story line” I’m hearing in my interviews is that quinine injections, especially inappropriately delivered quinine injections, are the cause of GF and PIP.  Quinine is a neurotoxic drug that can cause nerve injury and tissue necrosis and is not recommended to be given in WHO guidelines except in cases of severe resistant malaria; even then it is supposed to be IV not IM. 
These children receive injections every 8 hours usually for 3 days (9 injections total) and then if they are sick again with fever in a few weeks, they get the injections again for another presumed bout of malaria. 

After receiving these injections, some children develop post-injection paralysis – loss of motor and sensory function of the sciatic nerve distal to the injection if the injection needle hits the sciatic nerve or the drug gets too close to the nerve.  Other children develop a buttock abscess after injection which can then lead to muscle necrosis, fibrosis and gluteal contracture.  Compounding this tragedy is the fact that this neurotoxic agent is not recommended as a first line intervention for malaria. Oral or rectal treatment with another medication altogether is still the preferred primary approach. Even for severe malaria, notably cerebral malaria, intravenous medications are recommended, not intramuscular. 

However, the problem has another level altogether.  The inappropriately given intramuscular injections are attributed to untrained people in pop-up private clinics in rural Uganda.  Often these private clinics come about with a clinician with the correct documentation/credentials setting up a clinic then leaving it to be run by people who are not trained to make money.  The untrained workforce is cheaper and they can make money on a clinic set up using their credentials without having to be there. The reason people take their children to these clinics include issues with accessibility and education. They are not educated in knowing whether the “doctor” at the local private clinic is actually trained or not. In fact, they actually think these “quacks” are smarter because they don’t need tests to know what the diagnosis is and they charge money while the public real health clinics and hospitals are “free” and thus must be worse.  In addition, the time, distance, expense of going to actual public clinics isn’t worth it – there is too far to travel, too long of a wait, and often they get told once they’re finally seen that the drug they need is out of stock.  Compounding these issues, is the fact that the people think intramuscular injections work better and faster that tablets (much like US citizens think we need antibiotics for a cold).  It isn’t known why this belief has come about, but it is repeated over and over.  Thus, if your child is sick with fever, you believe they have malaria, you take them to the closest private clinic and ask for an injection. The untrained local practitioner then provides the injections without testing for malaria or counseling the child’s family on testing or on other more appropriate treatment options if the child indeed does have malaria. 

So how do these pop-up private clinics exist and why can’t we just put a stop to them easily? That my friends brings us full circle back to politics and economics.  The government has put minimal financial support into the health care system and thus the gaps in coverage, human resources, and ability to regulate are minimal.  In addition, the corruption at the highest levels of the government is mimicked in the rest of the governance with drug inspectors and district health officers relaying stories of trying to stop private clinics only to find that the law enforcement let the untrained local practitioners go after bribes.  Thus, it seems that while I am seeing a large problem with GF and PIP in the children of Uganda, what I am seeing is only a side effect of a much larger health systems and health care delivery problem. To be able to prevent these disabilities and others a much more comprehensive solution is needed, and I am hoping that during a dissemination meeting I am setting up with the Ministry of Health that I can help to begin to set the wheels in motion towards such a solution. While it seems like an impossible task, there is an African proverb that comes to mind as I move forward: “if you think you are too small to make a difference, you have never spent the night with a mosquito.”

Uganda Be Kidding Me: Iatrogenic Pediatric Orthopaedic Injuries in Kumi, Uganda

Kristin Alves
Resident in Harvard Combined Orthopaedic Surgery Program

Uganda Be Kidding Me: Iatrogenic Pediatric Orthopaedic Injuries in Kumi, Uganda

I began traveling to Uganda in the Fall of 2015 to begin to assess and help address two pediatric orthopaedic disabilities I had never heard of or seen in medical school or during my orthopaedic surgery residency.  My retrospective cohort study in Northeast Uganda in 2015 demonstrated that over 40% of children seen for any musculoskeletal disease in clinic at Kumi Hospital were diagnosed with one of the two disabilities I am working on.
These disabilities are common in Sub-Saharan Africa, and may be increasing in incidence.  We believe that these disabilities are iatrogenic and completely preventable impairments, this burden becomes even more alarming.  So what are these disabilities?  
One of these disabilities is post-injection paralysis (PIP).  Children with PIP suffer an injury to the sciatic nerve and develop loss of motor and sensory function of the sciatic nerve distal to the injection.  There seems to be a number of cases of PIP in Uganda and there is a need for further research.  The strong temporal association with the onset of PIP and the injection leaves the causation up for little debate.  Further research though is needed to understand what injection practices may be contributing to the development of PIP.  There are many factors that may be at play including technique, medication used, health of the patient, etc. 

The other disability is gluteal fibrosis (GF). GF is a fibrotic contracture of the gluteal muscles that cause significant functional limitations with a swinging out of the leg with any hip flexion.  These children for example have their knees go out over 180 degrees apart with attempts at squatting. Such alteration in hip biomechanics for affected children impacts their ability to go to school and to perform ADLs in their homes and communities.  The current hypothesis is that these children develop a buttock abscess after an injection which can then lead to muscle necrosis, fibrosis and gluteal contracture. Interestingly, while PIP patients have been seen throughout the country, GF patients have anecdotally been noted to primarily be seen in northeast Uganda which leads me to believe that an additional exposure is acting as an effect modifier of the injections in this region.
Treatment of GF is surgical resection of the fibrotic contracture while treatment of PIP has a variety of surgical and non-surgical options depending on the clinical presentation.  This large burden of disease that requires surgical management but could likely be prevented has not yet been addressed in Uganda.
This leads me to my current work in Uganda. I am in country to do a qualitative study to try to understand what is causing these two disabilities. This study will cascade into my next case control study to allow for a mixed methods study to assess causation of the disabilities. My study focuses on individuals involved in the administration of injections (physicians, nurses, health care workers, and community practitioners), individuals involved in the preparation of injections (pharmacies and health care staff), and individuals with knowledge of injection practices in Uganda (district health officers).  My study involves key informant and focus group interviewing to attempt to get a better understanding of what may be causing both of these disabilities.

I am currently in Kumi District with my team who are a part of the project including an orthopaedic surgeon, community based outreach health and social worker and research coordinator.

While we are getting set up to do the actual study we have gone out into the community to meet with the children suffering from these disabilities  

It’s been a powerful start to what I expect to be a really fruitful month. My month will include not only this research project, but I will also have exposure both clinically and surgically to pediatric orthopaedic diseases seen in Kumi and Kampala, Uganda.  It will be an amazing month with much to report in my next post!

Thursday, November 2, 2017

The Things They Carried: Paper Records, the Improvised Visit, and Guideline Adaptation in Oncology Care in Botswana

Shekinah Nefreteri Elmore, MD, MPH
Resident, Harvard Radiation Oncology Program

In Botswana, while each hospital keeps some of its own records, the bulk of the important things, including physical radiology images, biopsy reports, and past clinical assessments, travel with the patient. Who better to be the keeper of records than the recorded? This is how things once were at the Dana-Farber, I recently learned, chancing upon a vintage poster that said “Please remember to bring your records to your doctor’s visit!” And, we in the United States are again on our way back to this reality in its new form with patients increasingly accessing their records through an electronic format though a laptop or phone application.

Besides the practicality of having all of the relevant records in one stack, there’s another a tangible benefit of looking at the records with the patient: there is a sense of creating the patient’s story together. The visits generally go something like this. The physician and nurse sit on one side of a hefty desk. The patient and a family member on the other side. A small folder is presented across the wooden breadth. And, piece by piece, a narrative is exacted from the clinical notes, ultrasound snaps, and physical radiographs. The chart review becomes an interaction and an improvisation.

I don’t want to be nostalgic about an era of paper records that I never truly experienced. At their best, paper records constrain you by the amount that you’re willing to write. You are intensely bound by the relevant, not by what can be cut or pasted, which makes all notes more concise and information-dense to review. If you are able to read the handwriting, that is. Or, if they have not been damaged by water or dirt or time, or even lost. If there are not so many that it would be impractical to read them all without the search function that I rely upon so heavily my home hospital’s electronic medical record. “Has this patient had a recent CD4 count?” becomes a scavenger hunt that wastes valuable clinical time.

But, for the time being, the fully elaborated electronic record is a future proposition. However, once the narrative is sorted out and the diagnosis discovered, there is the need for new improvisation: determining the treatment plan. For generalist oncologists, even with a breadth of knowledge and years of experience, it can be challenging to know just what to do for each of the myriad oncologist conditions. The oncology team between the Ministry of Health of Botswana and the stakeholders from hospitals that provide oncology care are working to adapt and approve clinical guidelines for oncology that will ease an unnecessary part of this improvisation. While guidelines from national and international cancer organizations exist, they are often targeted to a scope of practice of high-income countries. Oncologists in low and middle income countries then have a much more complicated improvisation to adapt, on the fly, these guidelines to the patient in front of them with the resources available in their particular system. Country and region specific guidelines remove this pressure, allowing oncologists to practice systematically and to the best of their ability given resource constraints. The program to adapt guidelines in Botswana has started with the most prevalent cancers, creating simple to use guidelines that can be available in print and on laptops in the clinic. Supporting this project has taught me about equity in resource allocation and quality improvement. This is the unglamorous and important process of global health, bridging the improvisational to the systematic in the care of patients and the building of systems.