VIENNA – The Ebola crisis may be over in Sierra Leone, but the suffering is not.

The last patient from the epidemic was discharged in February 2016, but 78% of survivors now appear to have one or more sequelae of the infection. Some problems are mild, but some are so debilitating that life may never be the same.

Janet Scott, MD, of the University of Liverpool (England), heads a task force studying Ebola’s lingering aftereffects. These fall into four categories, Dr. Scott said at the European Society of Clinical Microbiology and Infectious Diseases annual congress: musculoskeletal pain, headache, eye problems, and psychological disorders.

They add up to an enormous risk of disability – survivors are more than 200 times more likely than controls to express at least moderate disability.

Dr. Janet Scott, who cared for Ebola patients in Sierra Leone during the epidemic, is now following them to learn about the disease's aftereffects.

Dr. Scott and her team of researchers are partnering with clinicians and data managers in the Ebola treatment unit in the 34th Regimental Military Hospital (MH34) in Freetown, Sierra Leone. In Sierra Leone alone, she said, there were nearly 9,000 cases and 3,500 deaths from the virus; about 5,000 patients survived. So far, Dr. Scott and her team have collected data on about 500 patients for whom they also provide free health care.

The project has six arms, each headed by an expert: clinical care, data collection, disability, neurology, ophthalmology, and psychiatry.

The team sees patients in a large tent sectioned by a plywood wall*. Wireless Internet access, which she said is “enormously expensive” in Sierra Leone, has been donated by Omline Business Communications*. It’s the team’s lifeline, allowing them to transmit data between Freetown and participating units around the world. Members also Skype regularly, talking with patients and with each other.

All patients who come into the clinic have an initial visit that includes collection of demographics, their Ebola and clinical history (including an exploration of comorbidities), a maternal health screening for women, vital signs and symptom assessment, medication dispensing, and a treatment plan.

Then they visit the specialists, either onsite or through local referral*. These specialist modules include joints, eyes, headache, ears, neurology, cardiac, respiratory, gastrointestinal, renal and urologic, reproductive health for both genders, and psychiatry.

The task force sees patients and processes collected data in this large tent.

Patients also fill out a disability questionnaire that asks them to report the presence or absence, and severity, of a variety of issues: visual problems, headache, balance problems, chest and abdominal pain, weakness, and gastrointestinal and urinary problems.

Last year, Dr. Scott published initial data on 44 patients. At ECCMID 2017, she expanded that report to include 203 survivors. They spanned all ages, but about 67% were in their most productive adult years, aged 20-39 years.

Her findings are striking: About 78% report musculoskeletal pain, with many saying they have trouble walking even short distances, climbing stairs, or picking up their children.

Headache was the next most common problem, reported by nearly 40%. About 15% report ocular problems, which include anterior uveitis, cataracts – even in very young children – and retinal lesions. Abdominal and chest pain affect about 10% of the survivors.

Although she didn’t present specific numbers, Dr. Scott also said that many of the survivors experience psychological sequelae, including insomnia, anxiety, and depression. Whether this is related to viral pathology isn’t clear; it could be a not-unexpected response to the trauma of living through the epidemic.

“Many of these people have lost their entire family, and those that are left now shun them,” she said in a live video interview on Facebook. “It’s almost like a post-traumatic stress reaction.”

The other symptoms probably are related to the disease pathology, she observed. “Unfortunately, we don’t have all the clinical details of the acute phase for everyone, but for those for whom we do have details, we are seeing correlation between some of the problems with viral loads at admission, and even episodes of becoming unconscious during the acute illness.”

Patrick Howlett, MD, of the King’s Sierra Leone Partnership, Freetown, leads the neurology study. So far, the researchers have collected data on 19 patients with severe neurological consequences. Of those, 12 (63%) experienced a period of unconsciousness during their acute Ebola episode. In a comparator group of 21 with nonsevere neurologic sequelae, 33% had experienced unconsciousness.

Headache was present in nine (47%) of the patients. Migraine was the most common diagnosis. “We don’t have money for migraine medications, but fortunately, most of our migraine patients seem to be doing well on beta blockers,” Dr. Scott said.

CT scans were performed on 17 patients: three showed cerebral or cerebellar atrophy and two had confirmed stroke.

The brain injuries were severe in two, including a 42-year-old with extensive gliosis in the left middle cerebral artery region and a dilated left ventricle secondary to loss of volume in that hemisphere. A 12-year-old girl showed extensive parietal and temporal lobe atrophy. She is now so disabled that her family can’t care for her at home.

Other neurological problems include peripheral neuropathy, brachial plexus neuropathy, and asymmetric lower limb muscular atrophy.

Paul Steptoe, MD, an ophthalmic registrar from St. Paul’s Eye Unit at the Royal Liverpool Hospital, heads the eye study. He has observed dense cataracts, even in children, and anterior uveitis that has blinded some patients. There is concern about live virus persisting in vitreal fluid, but two eye taps have been negative, Dr. Scott said.

Ibrahim Bangura (red shirt) is the project's data manager. Idriss Kamara manages data for Sierra Leone's blood bank and transfusion services.

Live virus, however, was recovered in 2015 from the eye of a U.S. physician who volunteered in Sierra Leone during the outbreak. During his recuperation from the illness, he developed an acute inflammatory reaction in one eye and began to lose his vision. His eye and visual acuity recovered after treatment with steroids and an investigational antiviral. A secondary tap was negative.

The most exciting recent finding, however, was made possible by the donation of a digital retinal camera, which “enabled us to get dozens of amazing images,” Dr. Scott said. With it, Dr. Steptoe conducted a case-control study of 81 Ebola survivors and 106 community controls. The findings of this study are potentially very, very important, Dr. Scott said.

“The first thing we found out is that retinal scarring is pervasive in our control patients,” she said. “There is just a lot of it out here in the community. But more interesting is that Dr. Steptoe seems to have identified a characteristic retinal lesion seen only in our survivors. It could be evidence of neurotropic aspects of the Ebola virus.”

The lesions occurred in 12 (15%) of the survivors and none of the controls. They are of a striking and consistent shape: straight-edged and sharply angulated. The lesions are only on the surface of the retina and do not penetrate into deeper levels. Nor do they interfere with vision. Dr. Steptoe has proposed that they take their angular shape from the retina’s underlying structures. His paper documenting this finding has been accepted and will be published shortly in the journal Emerging Infectious Diseases.

All of the post-Ebola sequelae add up to general disability for survivors, Dr. Scott said. Soushieta Jagadesh, of the* Liverpool School of Tropical Medicine, is conducting a disability survey. The comparison between 27 survivors and 54 community controls employed the Washington Group extended disability questionnaire. “We noted major limitations 1 year after discharge in mobility, vision, cognition, and affect,” Dr. Scott said.

The hazard ratios for these issues are enormous: Overall, compared with controls, survivors were 23 times more likely to have some level of disability. They were 94 times more likely to have walking limitations and 65 times more likely to have problems with stairs. Survivors were over 200 times more likely to have moderate disability than were their unaffected neighbors.

If funding for the project is renewed – and Dr. Scott admitted this is an “if,” not a “when” – caring for and studying these survivors will continue. Just in this one city, she said, the need is huge.

According to data from the U.S. Centers for Disease Control and Prevention, more than 17,000 patients in Sierra Leone, Liberia, and Guinea survived the 2014 Ebola outbreak.

If the assessments of Freetown survivors hold true across this population, thousands of survivors face life-limiting sequelae of the disease.

“We still have patients walk in every day with musculoskeletal pain, headaches, and ocular issues,” Dr. Scott said. “At the beginning of the epidemic, we were just focusing on containing it and reducing transmission. Now, we are faced with the long-term consequences.”

The Wellcome Trust supported the study. The authors have been awarded a grant from the Enhancing Research Activity in Epidemic Situations (ERAES) program, funded by the Wellcome Trust to support further research into the sequelae of Ebola virus disease.

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msullivan@frontlinemedcom.com

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*This story was updated May 2, 2017.

After the epidemic, Ebola’s destructive power still haunts survivors