Tuesday, December 10, 2019

Ending the Diagnostic Odyssey

I have thought a lot about the role of a neurologist in Zambia as I approach ten years of living in the country. It is easy to make the argument of a neurologist's value in this setting when a patient has a good outcome. Examples would be an epileptic who no longer has seizures when placed on proper medication or a patient with a brain abscess that disappears with an adequate regimen of antibiotics. However, many patients have poor outcomes regardless of the correct diagnosis. Examples would be patients with brain cancer, dementia, or another neurodegenerative condition. I would argue that a neurologist provides a valuable service for these patients and their families as well. 

Several years ago, I heard Dr. Marc Patterson, Chair of the Division of Child and Adolescent Neurology at the Mayo Clinic, give a grand rounds presentation on his area of expertise, a relatively uncommon condition called Niemann-Pick disease that has a fatal prognosis. He mentioned that his role is often simply ending the diagnostic odyssey for families. Parents often spend months, even years, trying to gain an answer for why their child has been suffering. This can result in lost time at school.  It also results in parents losing time with other children in the family. There is also a significant financial burden associated with the search for a correct diagnosis.

The same situation plays out in Zambia on a daily basis with even greater consequences.  Nearly all the patients at the University Teaching Hospital have a friend or family member that will stay at their bed side for the duration of the hospitalization. This may be for days, weeks, and even months. This takes an emotional and financial toll. The caregiver is the one responsible for bathing, changing, and feeding the patient. This is often a healthy member of the family who is clearly not able to work often resulting in lost income.  

Early in my time in Zambia, I diagnosed a patient with ALS or Lou Gehrig’s Disease. This is not a diagnosis any physician wants to make because it is nearly always fatal. It is a straightforward diagnosis for a neurologist to establish, simply by using the history and neurological examination. During the course of the ALS patient’s evaluation, he ended up getting a brain MRI scan. This test was expensive and totally unnecessary given the ultimate diagnosis. However, this patient had presented prior to the start of our training program and the physicians who saw the patient did not have the expertise to make the diagnosis. This lack of clarity resulted in extensive testing in search of the diagnosis. An MRI scan costs $200 in Zambia. This is a significant amount given the per capita income is ~ $4000. Patients without means will be asked to contribute some money towards the MRI and can sometimes get a full exemption. Some patients are able to mobilize the resources to pay the full amount.

It was gratifying to make a diagnosis and provide a realistic prognosis to the patient and family. The patient should have been at home at least one month earlier with palliative care. As is the case with most all ALS patients, outside of comfort care, there is little to offer in the way of treatment. At the very least, our team was able to send the patient home and stop any further spending of their limited resources. We were all happy to end their diagnostic odyssey. 

Sunday, December 17, 2017

Good Technology Bad Technology

There is a legitimate argument to be made that high-end technology does more harm than good in a resource limited setting. There are many factors that are involved in the administration of a piece of medical equipment in Zambia that donors and recipients do not take into account. It always seems like a great idea in practice. The stereotypical email I receive is as follows, "Hi Omar, we have this great (insert technology) that is being discarded at our hospital. Do you have a need for (insert technology) in Zambia?" The answer is almost always no.

The tendency is to think only about the benefits of the technology in a world that frankly does not exist. People have an image of a machine that never breaks, provides an exact diagnosis, and a patient receives a correct treatment based on the test results. There is not adequate consideration of maintenance, technical training, study interpretation, financial viability, and consequences of inappropriate use.

Within the field of global neurology there is always the temptation to introduce electroencephalography (EEG) into resource limited settings to improve the diagnosis of epilepsy. That would make sense if all that was needed to gain a benefit was turning on the machine. Unfortunately, having an any technology accounts for about 10% of what is required for it to be used successfully. The human element is always the overlooked piece. Someone must know how to use the technology and someone must know how to interpret the findings. Without these two key pieces, it is simply a case of garbage in/garbage out and can result in harm to the patient.

EEG, which measures brain waves by attaching electrodes to the scalp, is a supportive but by no means definitive test in the diagnosis of epilepsy. In other words, if you see abnormal brain waves, it can help confirm the diagnosis of epilepsy but many patients with epilepsy have a normal EEG. As a result, the diagnosis of epilepsy is still clinical and largely based on the patient history. Additionally, a properly trained EEG technician is critical towards obtaining a high-quality study that can be interpreted by a neurologist trained to read EEGs. In the U.S., there are EEG training programs lasting from 1-2 years in order to become a certified as a technician. I went through one year of epilepsy fellowship in order to learn how to interpret an EEG.

In terms of epilepsy in resource limited settings, there is something called the treatment gap. The treatment gap is defined by the percentage of patients with epilepsy who are not on treatment. In the majority of Africa, the treatment gap is > 90% The majority of these patients can be diagnosed with epilepsy by clinical history alone. It makes much more sense to concentrate on providing medicines to lower the treatment gap rather than scaling up the use of EEG.

However, I have observed that there is something intoxicating about the technology. Hooking up a patient to electrodes while brain waves appear on a computer screen makes patients and providers feel like they are participating in a higher-level care. This occurs even in the setting of rampant misuse of the technology in Zambia. There are numerous EEG units currently in use in Zambia. Near as I can tell, the only purpose they serve is to charge patients for a sham test. I have seen reports that are said to be abnormal literally copying the verbiage I use in my reports. The patients are then sent to me for further management. I manage 1 of only 2 only legitimate EEG labs in the country based on competence of the technicians and quality of the reads. It has been a great challenge to keep our lab financially viable.

The same issues exist with neuroimaging technologies such as CT and MRI scans. Everyone thinks it is a good idea without taking into consideration the heavy lifting involved in managing a successful imaging laboratory. I remember during my first visit to Zambia in 2006 naively thinking, "If only they had an MRI scanner here, things would be so much better". I even had the audacity to email the head of the National Institute of Neurological Diseases and Stroke, Story Landis, to ask how I could facilitate the purchase of an MRI scanner for Zambia. This is comical looking back now.

There are some very real instances when CT or MRI scans of the brain have done more harm than good in Zambia. The thing that should precede the introduction of CT or MRI technology are competent radiologists that can read the studies. Without properly trained personnel there are major limitations to the reports that are issued. Sometimes reports are issued by individuals who have had no formal radiology training. Providers then treat CT and MRI reports as gospel. There is often anchoring on a diagnosis without questioning the findings and patients are treated inappropriately. Complex cases don't have to be thought through. Providers can always say that they were just following the radiology report.

Another issue with a poorly implemented and utilized technology is that it may contribute to the equipment graveyard. This is the term used for useless broken-down equipment that occupies valuable space that could be better utilized. There is a non-functioning electron microscope (EM) that has been at the University Teaching Hospital in Zambia for over 10+ years. On the list of 100 things needed in this setting to improve care an EM sits at #110. Yet nobody wants to discard a piece of equipment that was worth a lot of money at one time even though it has no diagnostic utility. It continues to take up an entire room in the virology laboratory where it currently sits as the most expensive paper weight in the country.

Part of the aversion to throwing anything away comes from the context of having resource limitations. When I first arrived in Zambia in 2010, there was a large exhaust pipe that was the wrong fit to a laminar flow hood in the department of medicine laboratories. It sat in the hallway in the most inconvenient place where you were liable to trip on it more than anything else. It was a huge eye sore. When I asked the lab manager if it could be discarded he said maybe someone could use it someday. I then asked how long had it been lying there - the answer was 10 years. Despite strenuous objections, I had it removed and it has made no difference, though some people still hold on to the idea that it was wrong to remove it. I still joke about the pipe to this day.

The best ideas and technologies in this setting are simple. A game changing technology is a cell phone for a myriad of reasons. Its use is widespread. It is easy to replace. It serves as a reliable light source that can be used during surgery or cervical cancer screening when there is not steady electricity. It provides a tool for patient follow-up, study outcome, lab results, and appointment cancellations so that a patient does not spend transport money when a provider is not in the clinic. Providers in rural areas will send me WhatsApp videos of patients with movement disorders and ask for medication recommendations. I discover new uses almost monthly.

Donations of equipment are always well intended but people must consider what lies on the other side. There are consequences of equipment taking up space, serving a transient benefit, and having improper implementation. The title of an issue of the Harvard Business Review I recently read had the title: Humans are Underrated. This is particularly true when it comes to global health. Humans must come before technology.  


Monday, May 29, 2017

The Broken File Effect


The three most important pieces of equipment that I have to improve neurological outcomes and perhaps even save lives in Zambia are my stapler, staple remover, and hole punch. Most people would wonder how this is possible. These three simple tools help me address what I call "The Broken File Effect".

This term is adapted from "The Broken Window Effect" which was felt by some to be responsible for the high crime rate in New York City in the early 1990's. When it was addressed, the result was a dramatic, almost unfathomable drop in the city's crime rate. "The Broken Window Effect" is elegantly described in Malcom Gladwell's book "Tipping Point". In its most simplified form, "The Broken Window Effect" describes how the environment such as broken windows, abandoned cars, and graffiti on subway cars contributes to crime because of the behavior it "permits". The book goes on to describe how cleaning up the environment and addressing smaller crimes like targeting turnstile jumpers on the subways helped police to prevent larger crimes in the long run. It turns out that turnstile jumpers were often perpetrators of larger crimes and arresting them prior to getting on the subway was an effective tool for prevention.

I think the same principles can apply to health care in Zambia particularly as it relates to patient files. A patient's medical file is essentially the only record that exists related to a patient's medical history. The same medical file is used to document clinic visits as well as notes during an admission. Most patients take these files home. It is a valuable source of information.

The main problem is that these files are often in horrendous condition. Notes, laboratory studies, and radiology reports of varying sizes are thrown together, most commonly attached by a swarm of staples in the upper left-hand corner. Often, there are no blank pages at the end of the file for further documentation. Instead, random pages, that are blank on one side, are stapled to the last page adding chaos and instability to the file.

I have become obsessed in my outpatient clinic with cleaning patient files. The first thing that I do after recording a patient's biographical information is to go through their file and remove excess staples, reorder the papers in chronological order, save vulnerable laboratory results or radiology reports that are loosely placed in the file, punch holes in all the papers, add continuation sheets, and finally ask the clerks to bind the papers into a new file if necessary. They have become accustomed to my emerging from the clinic room with a dilapidated file stating, "This file needs love!".

I am convinced that addressing "The Broken File Effect" saves patient's money, reduces unnecessary testing, and improves outcomes. There is no greater waste than performing a test and not having the result. It is worse than not performing the test at all because a resource has been used for no reason. A CT scan in Zambia costs US $120. This makes up a substantial portion of a family's income for the year. Yet, patients often find a way to raise some or all of the money to have the test done. Often, the only record of the test is the radiology report and/or a CD that is placed in an envelope and attached to their file. I frequently have seen these envelopes fall out of files or hanging on to the file for dear life by half a staple.


If this radiology envelope is lost, there may be no record of the study if it has been erased from the CT scanner. This happens frequently. As an example, a patient may develop chronic headaches after losing their spouse to HIV infection. During the course of their initial evaluation, they had a normal CT scan but lost the radiology envelope. So, what happens? Instead of getting what they need which is grief counseling they may see a new provider who orders another CT scan.  This waste of resources, unnecessary financial cost, and delay in the initiation of proper care could be avoided simply by addressing "The Broken File Effect".

Tuesday, July 26, 2016

A Drop in the Ocean

Upon waking up on Wednesday mornings, I try not to press the snooze button. It is my neurology outpatient clinic day at the University Teaching Hospital and the first patients start arriving at 5 AM. Most patients live in the greater Lusaka area but there are always a few who have traveled hours by bus, sometimes overnight. If I can see my first patient by 6:45 AM then I can keep up with the flow. However, if I begin some time after 7 AM then the patient files start to build up and I feel like I am sprinting.

As I walk through the doors of Clinic 4, there is already a group of patients seated at the benches. I always try to acknowledge the crowd with the standard Nyanja morning greeting, “Mwa-uka bwanj?”. Its literal translation is “How did you wake?”. Without fail, the tired faces turn to smiles as they appreciate my attempt to use the local language. I get the standard reply “Bwino” (Good) from the crowd. The hour-long Nyanja lessons that my wife and I take on Sunday afternoons with a Peace Corps language instructor has to be one of the best investments that we have made. The nurse, Sister Gloria, who is the matriarch of the clinic, always gives me a knowing smile when she hears my Nyanja as it was upon her insistence that I formally greet all the patients.

I am always at battle with the pink colored patient files. If I have some visiting neurologists, usually from the States or Europe, then I don’t get too upset with the height of the pile. If I am alone, then a large pile can mean that patients at the bottom will be waiting for hours. I try to see the follow-ups first as they are usually more straightforward: a well controlled epileptic in need of a medication refill or a recovering stroke patient requiring a physical therapy referral. However, the clinic is first come first serve so it never quite works out as planned. Inevitably, I will have new patient evaluation that will require as much time as I can provide. A typical example might be a newly diagnosed HIV-infected patient with the inability to walk. In the States this patient would get an hour-long evaluation, subspecialist referral, and perhaps even a presentation in a multidisciplinary conference. I am still grateful that I can give 30 minutes.

Normally, I have finished seeing the last patient by noon. I diligently record every patient I see in an excel file. I am always amazed at how predictable the numbers are in terms of new patients, no shows, and drop ins. As a result, I have learned what I can handle in terms of efficiency. On my average clinic day, there will be 11 follow-ups, 7 news, 6 no shows, and 2 drop ins.  The prevalence of HIV-infected patients is equally predictable. No matter if I audit my files over 3, 6, or 9 months, it is always 18%. Scheduling appointments in time blocks has essentially been proven not to work in this setting as it would require a complete shift in the Zambian concept of time. As my language instructor once told me, “Americans think time can be lost, Zambians think time can be recovered”.

I could see patients every single day and it would still not make a dent in the overall neurological disease burden. I have two other colleagues, also expats, who make up our small neurological community. There are limits to what three providers can do when you are talking about a population of 13,000,000 people.  Hopefully, we make a difference for the patients we see. Our most effective role is training frontiline providers on common neurological conditions.  The holy grail is to train a cadre of Zambian neurologists to take our place and build a meaningful and vibrant neurological community. Until then, our clinical contributions are just a drop in the ocean.

“Do you ever get frustrated?” I received this question recently at a fundraiser in New York City. It was such a simple question but a great one.  I had never formally thought about it and I really had to think hard about the answer. Yes, I get frustrated all the time: power outages, medication non-adherence, bureaucracy, and theft. However, most people working in resource-limited settings are aware of these challenges going in. Also, when something works out despite all these challenges it is incredibly rewardng.  Our EEG laboratory in Clinic 4 is a huge source of pride. It was the first lab of its kind in Zambia, provides a valuable resource to epilepsy patients, resulted in the training of two Zambian EEG technicians, and until a recent economic downturn in Zambia, had been self-sustaining.  I often equate my situation to a coach who has taken over an athletic team full of talent but has never had a winning season. If I can work within the system, motivate the players in the right way, then the wins will start to come.