Reducing mortality from Ebola through a comprehensive, decentralised and integrated standard of care

Since 2014, ALIMA has been involved in the management of several Ebola outbreaks. Despite the implementation in North Kivu and Ituri of recommendations derived from analysis of previous episodes, there has been no significant improvement in case fatality rates. In Guinea between 2014 and 2016, for example, the case fatality rate was 66.7%, See http://apps.who.int/ebola/ebola-situation-reports while in the tenth and current outbreak in the Democratic Republic of Congo (DRC) the fatality rate was 65.9%.

ALIMA promotes a more flexible, comprehensive, integrated and patient-centred approach to reducing mortality. This approach seeks to strengthen the quality of care around three main axes:
• The clinical standard of care within Ebola Treatment Centres (ETCs) for confirmed cases.
• Outreach activities and decentralised and integrated standards of care for all patients, including suspected cases.
• The standard of care for Ebola survivors and their integration within the health system to ensure proper monitoring and follow-up.

Clinical standard of care within Ebola Treatment Centres

ALIMA developed an optimised standard of care for Ebola patients after the outbreak in West Africa. When the disease was discovered, clinical management standards were 40 years old. Since then, ALIMA has developed new care standards to reduce the disparity between the care delivered in Western countries and in our areas of intervention. The development of the Biosecure Emergency Chamber for Epidemics (CUBE) allowed us to deliver in-depth healthcare while at the same time improving the protection of health workers. The Optimized Standard of Care Guidelines, reviewed in January 2019, clearly define the necessary standards of care, including fluid resuscitation, electrolyte monitoring and correction, treatment of potential co-infections, nutrition and the management of complications. WHO, Soins de support optimisés pour la maladie à virus Ebola – Procédures de gestion clinique standard, 2019.

To meet these standards, ETCs also need adequate numbers of trained staff and sufficient and appropriate medical equipment. While the CUBE helps address protection from contamination, dedicated resources, staff with specific biosecurity training and clear protocols also have to be in place. Local recruitment, training and engagement of Ebola survivors is also necessary if the standards are to be met.

New treatments and clinical research

In addition to the Optimized Standard of Care, four drugs have been used to treat Ebola patients under the MEURI protocol (Monitored Emergency Use of Unregistered and Investigational Interventions). MEURI is an ethical protocol designed to evaluate the potential use of experimental drugs during public health emergencies. It was initiated by the World Health Organization (WHO) after the West African outbreak. WHO, Consultation on Monitored Emergency Use of Unregistered and Investigational Interventions for Ebola Virus Disease (EVD), 17 May 2018.

Because it was not clear which drug was most effective, a randomised controlled trial was conducted between November 2018 and August 2019 by the PALM Research Consortium. The preliminary results strongly indicated that patients receiving either mAb114 or REGN-EB3 had better chances of survival than those taking the other two drugs. Palm Consortium Study Team, ‘A Randomized, Controlled Trial of Ebola Virus Disease Therapeutics’, New England Journal of Medicine, 27 November 2019.

While the results of the trial have helped increase survival rates, it is important to continue innovating to improve care. One key priority is finding better ways to manage critical renal failure, a common cause of death among Ebola patients. Clinical research implemented immediately at the beginning of an outbreak should also continue to improve treatment efficacy and increase knowledge of infectious pathogens.

Integration of clinical standards of care

Providing optimised care for Ebola patients should not mean neglecting the existing health system. To avoid this risk, ETCs should be set up within existing health facilities. ALIMA has established two of the ETCs it operates within the compounds of the general hospitals in Beni and Mambasa. Integrating ETCs into existing health structures reinforces national health systems, strengthens the training of public health workers, who make up the majority of treatment centre staff, and expands the pool of expertise. It also helps ensure continuity of care for people who do not test positive for Ebola. For example, several pregnant women admitted as suspected Ebola cases at the ETCs were given a safe emergency cesarean section, before being referred to the maternity ward for post-operative monitoring and neonatal care.

Mortality cannot be reduced without proper outreach and decentralised care to minimise the time between the onset of symptoms and admission to a treatment centre. However, the low chances of survival and the isolation of the ETCs and of the patients within them spread rumours and fear. This makes people delay going to or refusing referral to an ETC. Any delay in treatment is associated with higher mortality. The PALM study in DRC shows that ‘the odds of death increased by 11% for each day after the onset of symptoms that the patient did not present to the treatment center’.

Individual, targeted and patient-centred health promotion

Community mobilisation must be centred on the patient, meaning that family, friends and any other contacts around a confirmed patient must be considered as patients as well. They are under high levels of stress, and face a high risk of becoming sick and dying if proper action isn’t taken. They have to be monitored individually, with their own issues and characteristics.

Current approaches to community mobilisation in North Kivu do not respect privacy and local dynamics. As such they are unproductive in reducing delays in admissions. In the same way, wide case definitions may have a positive effect on case detection, but are not adapted to the community. Community mobilisation must be understood as a pull factor to help each individual, ensuring their own follow-up and acting as leaders for others. Arranging visits to ETCs for families, specific community groups and community leaders can be effective in this regard, alongside measures to make monitoring contacts more acceptable. While it may be tempting to use communications experts to disseminate messaging around Ebola, it is essential that this communication is carried out by communities, families and friends, and through influential community leaders; religious leaders, for example, cannot become health agents for the Ebola response, but they will be able to pass on the right messages. Leaders understand local, traditional dynamics, and know what messages will have the greatest impact much better than external actors.

Integrated and decentralised transit centres

Integrated Transit Centres (ITCs) implemented in previous outbreaks were used again in North Kivu. Under the ITC model, part of the responsibility for case management is integrated into the local health system. The aim is to enable local health workers to manage suspected cases, while maintaining healthcare provision that is adapted to the needs of the community. The approach brings the management of suspected cases closer to communities, within a structure and with health personnel that people know. As an example, the first ITC we set up in the Hospital Centre Sainte Famille in Mukuna is now managing suspected Ebola cases in a six-bed unit, with no external support. After two or three months’ training and supervision, the unit is being managed by hospital health workers.

While ITCs manage suspected cases, case detection will be improved only if the hosting facility provides a wide range of healthcare. Access to standard healthcare creates a pull factor, enabling coverage of a large number of patients. With triage at admission, any sick people fitting the Ebola case definition can be admitted for testing and case management. Referral is faster, breaking the transmission chain, reducing isolation times and decreasing the risk of mortality. This approach also helps support wider health facilities and limit increases in mortality linked to other diseases.

Comprehensive care for Ebola survivors

As of 10 January 2020, there were 1,122 Ebola survivors in North Kivu and Ituri. We know three things about Ebola survivors. First, most patients discharged as cured from ETCs present symptoms or conditions caused by the disease. They enter a chronic phase of the disease, after the critical phase managed within the ETC. The most common problems are musculoskeletal pain (50–70%), ophthalmological disorders, abdominal pain, headaches, asthenia, memory and hearing loss and psychiatric problems. According to a cohort study in Guinea, within a year after discharge from an ETC, Ebola survivors were five times more likely to die than other Guineans. Mory Keita et al., ‘Subsequent Mortality in Survivors of Ebola Disease in Guinea: A Nationwide Retrospective Cohort Study’, Lancet Infectious Disease, 19:1,202–08, 4 September 2019.

Regular medical follow-up is essential to ensure that the after effects of Ebola are managed in a timely manner immediately after discharge from an ETC. Health services have to be offered close to patients, by a multidisciplinary team combining all the monitoring axes. Primary- and secondary-level health structures should be supplied with appropriate drugs and equipment, both for routine check-ups and specialised consultations, and additional training for health personnel must be ensured, as well as training in biological monitoring for laboratory technicians. Where there are complications, referrals should follow the classic health pyramid to offer specialised care to patients.

The high risk of psychological disorders among patients who have recovered from Ebola in a treatment unit requires proper follow-up. Reported psychological problems include anxiety, depression, sleep disorders and neuropsychiatric manifestations. Other signs, such as erectile dysfunction, amenorrhea and decreased libido, have also been reported. Patients discharged from an ETC should receive psychological support, cognitive-behavioural therapy, family therapy and psychoeducation.

Affected individuals and the families and relatives of cured or deceased patients may also report psychosocial disorders, and these will need to be managed. Healed and affected people may also face social stigmatisation, including exclusion from the community. The main problems faced by survivors at the socio-economic level are job losses, with a particular increase in vulnerability among women and young people in families where a family member has died from Ebola. There is thus a need for social support to reduce stigma and socio-economic vulnerability among these groups.

Integration of chronic Ebola care within the health system

At this stage, where medical research is not as far advanced as clinical trials for therapies or vaccinations, the strongest certainty is that patients discharged as cured from an ETC will require medical management to decrease the risk of death and increase the chances of reintegration. This follow-up resembles outpatient treatment and must therefore be integrated within the health system as with any other chronic disease.

We cannot expect to reduce mortality from Ebola without responding to an outbreak through a patient centred approach. Otherwise, the best we can hope for is to limit the spread of new cases. ALIMA believes that proper clinical management of an Ebola patient starts from the day a case is confirmed to the day where the viral load equals zero and there are no more symptoms, which might take several years. Improvements have been made in the clinical management of confirmed cases, but the delay between the onset of symptoms and admission at a treatment unit remains the main risk of death. To reduce this delay, more responsibility must be given to the community and local actors.

Finally, medical research must continue, and should focus on innovative solutions. For example, a rapid diagnostic test would reduce the time between admission and diagnosis from two days to a few hours, buying precious time to start treatment. It would also help in avoiding the referral of non confirmed cases to an ETC and contribute to better clinical management for non-Ebola cases. Early diagnosis might also prevent a contact person falling sick by delivering a prophylaxis post-exposure, based on the two drugs that have been shown to reduce mortality among confirmed patients.

Dr. Richard Kojan is an Intensive Care Physician, President of ALIMA and innovator of the CUBE. Dr. Papys Lame is Emergency Department Medical Manager, Eric Barte de Sainte Fare is R&D Program Manager, Valérie Chanfreau is Mental Health Referent, Mélanie Tarabbo is Emergency Coordinator and R&D Medical Manager and Nicolas Mouly is Emergency Department Program Manager, all with ALIMA.