Everything we know about Ebola since the disease’s two dozen or so outbreaks since 1976 comes not from a rich, deep database of scientific evidence that’s been carefully collected and recorded. With few formal health care systems in the areas hardest hit by the disease, there were no medical records, no charts and no standardized ways to document patients’ symptoms, vital signs, treatment regimens and whether or not they survived. Instead, much of our knowledge comes from the haphazard scrawl of doctors’ notes and their recollections about treatment and survival rates.
But for the past 10 years at Kenema Government Hospital in Sierra Leone, the country’s Ministry of Health has been working with a group of international researchers to establish a meticulous medical records system—originally for patients with Lassa fever, another common infection in the region. So when the first Ebola patient walked through the door on May 25, the same procedures for documenting vital signs and treatment information stayed in place. Now, for the first time, doctors have a robust record of the first Ebola patients in the current outbreak treated at Kenema beginning in May—and the results of that record-keeping appear in the New England Journal of Medicine.
The new records were a challenge to collect, since infection control rules meant that the paper charts could not be transferred back and forth between the ward where patients were treated and other areas of the hospital. “The nurses’ station was separated from the patient rooms by essentially a chicken wire window, so the nurses would talk to each other through the chicken wire—the nurse inside, in personal protective equipment, would tell the nurse outside what to write down,” says paper co-author Dr. John Schieffelin, an assistant professor of clinical pediatrics and internal medicine at Tulane University who has been serving stints at the hospital for the last four and a half years. Even that rudimentary system was state of the art for the region, where most health clinics do not keep medical records. “In most of Sierra Leone, the hospital chart is one of those little composition books that we used to write essays in during high school,” says Schieffelin. “There was no structure to it; the physician would just write daily notes and most hospitals don’t have a charting system.”
The new documents confirm what previous health workers knew about Ebola from experience. Of 106 patients with Ebola, 44 had complete medical charts in paper form (the rest were destroyed because health officials feared they had been contaminated with the virus), and the findings supported some basic tenets of Ebola infection: that the incubation period for Ebola virus is about six to 12 days, that 74% of those infected died, that younger patients were more likely to survive infection than those over age 45, and that people with less virus in their blood when diagnosed were more likely to survive.
“It affirms our understanding of how to treat Ebola patients,” says Schieffelin. “We need to treat them aggressively with IV fluids and monitor their blood chemistries. The study also gives us a good solid baseline for understanding the disease, so we can build on it in a lot of different ways. It’s a foundation for doing further studies for optimizing treatment. It provides a great foundation for studies looking at novel treatment methods. Now that we understand how Ebola affects patients, can we improve symptoms and outcomes with novel therapies? We can start to ask and answer those questions.”
Turning those answers into new treatment strategies, however, might be a daunting task—especially in the context of the current outbreak. On most days, the Kenema hospital would see about 90 Ebola-related patients, some of whom were suspected to have the disease but still needed to be tested, and others with confirmed infections who needed to be immediately assigned to a bed and given IV fluids. “There are a lot of confused Ebola patients,” says Schieffelin. “These people are wandering around the ward, often going from one bed to the next, and they are scared so often not very cooperative. To top that off, a lot of people didn’t speak English, so that made it even more challenging.”
He admits to often tossing patient confidentiality concerns aside by asking other patients who were feeling well to translate critical information to their peers, who either didn’t need to be in the hospital any longer because they tested negative, or needed to be immediately transferred to another ward if they were infected.
At Kenema, the health care workers did not use the full-coverage hazmat suits that Medecins Sans Frontieres uses in its clinics. Instead, they wore Tyvek suits that covered their front and back, a mask, face shield, double gloves and a head covering. That left some skin in the front and back of the neck exposed. The reason was partly for practical reasons—Schieffelin was often the only health care worker on his part of the ward where patients were triaged, and frequently had to spend four to four and a half hours at a time suited up. The full coverage suits become uncomfortable and unbearable after about 45 minutes.
“But I was personally okay with our equipment,” he says. “Because my biggest concern was getting a needle stick. My mucous membranes—my eyes, nose and mouth—were pretty well covered.”
After about four hours, he and whoever else was working on the wards with the infected patients would get sprayed with a bleach solution from the shoulders down, in order to avoid splashing any potentially contaminated material onto their face and neck. Then they would take each piece of equipment off and wash their hands in bleach after each step. After a break of an hour or so, they would suit up again.
When Schieffelin returned from his work in Sierra Leone in August, he was told by the World Health Organization, U.S. Centers for Disease Control and the Louisiana state health department (he lives in the state) to monitor his temperature twice a day for 21 days, which he did. He was also told not to use mass transportation. He worked at home for a couple days, only because he was exhausted after his trip, and when he returned to work he didn’t see patients for a few weeks—mostly out of a scheduling coincidence, not intentionally.
Given public concerns about Ebola potentially coming to the U.S. and spreading here, however, he says, “Perhaps we should say that in terms of physicians and nurses, maybe direct patient care for a couple of weeks would not be in anyone’s best interest.”
But while he recognizes that hospital organizations and the general pubic have legitimate concerns about being protected against an agent as deadly as Ebola, Schieffelin is against mandatory self-isolation or quarantine, measures the states of New York and New Jersey recently decided to require for all health care workers returning from the three countries affected by Ebola. “I think self-isolation is completely unnecessary if you are not symptomatic. In my mind, that enhances hysteria. I have young children. If their dad were in self isolation away from everybody for three weeks, that would adversely affect them and would be telling the community and the schools the wrong message: that I need to be a pariah and an outcast for three weeks,” he says. “In my mind, that’s not the right message. If I have no symptoms, I am not a threat to anybody—I’m not a threat to my children, nor are my children a threat to other children at their school.” Such mandatory quarantines could also deter health workers from contributing to the effort to control the epidemic, and that will only prolong it, he says.
Schieffelin says that if he had recorded a fever at any point during this 21 day monitoring period, he would have immediately reported to the Louisiana health department and gone into isolation. He knows how deadly Ebola can be from personal and professional experience: seven of Schieffelin’s co-authors on the paper have died of Ebola infection since the data were collected over the summer.