Neurologic Care of Forcibly Displaced Persons

Manuscript Scope and Disclaimers

Emerging Issues in Neurology (EIN) articles, published by the American Academy of Neurology (AAN) and its affiliates, provide guidance to neurologists about new or emerging issues that have immediate implications for the care of patients with neurologic disorders. The intent is to provide informal guidance derived from expert consensus until an evidence base is established that can inform evidence-based recommendations. The information in an EIN article (1) should not be considered inclusive of all proper treatments or methods of care or as a statement of the standard of care, (2) is not continually updated, (3) does not mandate any particular course of medical care, and (4) is not intended to replace the independent professional judgment of the treating provider, as the information does not account for individual variation among patients. In all cases, decisions about patient care should be considered in the context of treating the individual patient.

The specific goals of this EIN article are (1) to define the scope of the problem of providing neurologic care to FDPs, (2) to highlight commonly encountered clinical challenges related to neurologic care of FDPs, and (3) to provide useful clinical information for neurologists and other clinicians delivering care to FDPs with neurologic needs. The rise of armed conflict and entrenched violence and the recent rapid increase in the global population of FDPs compel further attention. The negative effects of forced displacement on the quality of neurologic care warrant discussion as an EIN article. This article was approved by the AAN Quality Committee on August 29, 2022, and by the AANI Board of Directors on September 16, 2022.

Scope of Problem

Epidemiologic research and data on neurologic disorders in FDPs are very limited. There are few reports on optimized treatment approaches, educational modules, or pathways to neurologic care. Technologies that could improve neurologic care for FDPs, such as telemedicine, have not been monitored or evaluated. Global clinical data systems capture few of the many possible clinical presentations of neurologic disorders in FDPs. Given the high burden of neurologic disorders worldwide, neurologic disorders are likely untreated or undertreated in many FDPs. Important variables in the understanding of neurologic care of FDPs include the income of the FDP's country of origin, the income of the host country, health systems' capabilities, the FDP's residence in an urbanized setting or a camp setting, presence of neurologists in that setting, presence of neurologically educated frontline workers, the FDP's history of trauma and other comorbidities, and the duration of the displacement and the humanitarian crisis. There may be bidirectional relationships between neurologic disorders and forcible displacement. Neurologic disorders may prompt or prohibit displacement. Conversely, displacement may cause or contribute to a range of neurologic disorders, including injuries to the nervous system, nutritional deficiency–associated presentations, and recurrence of previously treated conditions such as seizures or functional disorders.

Underpinning these complexities is a dearth of neurologists in many LMICs.⁷ Globally, an increasing, worrisome trend toward targeting of health care workers and hospitals during conflict exacerbates the shortage of medical expertise. Neurologists may be targeted by threats, arrest, or assassination in crisis settings.

Forcibly displaced populations may possess multiple sources of vulnerability. These include psychological and physical trauma; lack of adequate sanitation; food, water, and energy insecurity; temperature extremes; protracted journeys in precarious conditions; exposure to endemic diseases; exposure to rape, torture, or war crimes; stigmatization; and multiple displacements.

FDPs may ultimately repatriate, stay in a country of first asylum, become displaced again to another country of asylum, or resettle in a third country. Repeated displacement is a defining feature of some conflicts.^8,9 Negative health effects of displacement often continue after resettlement. Language barriers can continue to delay diagnoses,¹⁰ and psychiatric effects persist, correlating with the length of stay at asylum centers.¹¹

It is important to highlight that many terms used in discussions of forcible displacement have legal definitions. People identified as refugees, undocumented immigrants, or asylum seekers may all be seeking refuge and fleeing persecution for reasons of race, religion, nationality, membership in a particular social group, or political opinion—the distinction lies in legal circumstances. An individual could be undocumented (i.e., they do not have a legal right to remain in the country they are in), then become an asylum seeker, and then become an asylee or refugee.¹² In the United States, people may transition between dozens of visa types and legal designations on this path, and access to health care can vary accordingly. Health care workers who aim to provide high-quality neurologic care to FDPs require knowledge of the environmental, cultural, psychological, and legal issues frequently encountered by these patients.¹³

What Is Reported

Neurologic diagnoses are common among FDPs. For example, neurologic diagnoses accounted for 17% of Iraqi refugees seeking medical care in Jordan following the Iraq War with 13% requiring referral to a neurologist.¹⁴ In a study of emergency department visits in Germany in 2018, FDPs most commonly reported headache, had higher diagnosis rates of psychogenic nonepileptic seizures and psychiatric disorders, and waited longer to receive a diagnosis compared with the host population's patients.¹⁵

Common neurologic disorders, including headache, stroke, and epilepsy, predominate in most reports of neurologic presentations of FDPs. In refugee camps, epilepsy and seizures are by far the most common neurologic disorder recorded. Depending on the age structure of the population, dementia is also reported. CNS infections are reported but are generally uncommon in FDPs due to active surveillance, global vaccination programs, and testing. Traditional surveillance systems for highly contagious or transmissible neurologic infections, such as poliomyelitis and meningitis, occur in many tropical settings while programs for epilepsy, stroke, or cerebral palsy are generally absent.¹⁶

The global population is aging, resulting in a rise of noncommunicable diseases such as hypertension, diabetes, obesity, and smoking-related disorders. In addition, FDPs have more frequent multimorbidity and higher incidences of headaches, musculoskeletal pains, and malnutrition-related conditions such as peripheral neuropathy.^17,-,20 Previously treated conditions, such as hypertension, may be more difficult to control during forced displacement.¹⁶

There is a growing burden of traumatic and posttraumatic conditions in FDPs. Exacerbations of chronic disorders, such as multiple sclerosis and epilepsy, may occur due to excessive stress and interrupted availability of maintenance medications.^18,21,22 Psychogenic nonepileptogenic seizures are also reported in FDPs.

FDPs experience infections that are less prevalent in the countries where they resettle, including reemerging infections, vaccine-preventable infections, or infections from different ecosystems.^18,19 Importantly, FDPs may be erroneously blamed for bringing infectious diseases into a new country, a source of stigmatization that should be handled carefully by treating clinicians.

Common Challenges Related to Clinical Neurology

Practical Information and Clinical Approaches

When approaching the evaluation and treatment of FDPs, health care practitioners should ask: what is known? Ask directly for medical records—in many countries, patients carry their own. In building the clinical story, always use a medical interpreter if available. Even clinicians fluent in a language may be unfamiliar with specific terms used in the patient's local dialect. Consulting professionals from the displaced community can be particularly valuable to ensure important historical points are not missed. Beyond attaining information on the presenting condition, ask about the patient's recent experiences that may affect clinical care or assessment (e.g., interruption in treatment or rehabilitative process, loss of assistive devices, or loss of medications).

For people with a physical neurologic disability, are there specific needs that could compound acute care if interrupted? For those with neuromuscular disorders, do they have specific respiratory or feeding needs? Much can be attained from a careful clinical assessment, but the loss of a health history in a person with a complex medical background places the individual at increasing risk the longer the care is interrupted.

When caring for FDPs, neurologists should be aware that experiences from the premigration period, the migration journey, and postmigration resettlement can all be relevant to a patient's health care needs.^26,-,28 Neurologists should inquire about this full continuum of experiences. Premigration experiences may include exposures to physical and psychological trauma in the country of origin, social determinants of health in those countries, and the limitations of the health care infrastructure resulting in underdiagnosis or undertreatment of health conditions. The migration journey can involve malnutrition; dehydration; separation from family; exposure to new illnesses or traumas; and lack of medical, psychological, and dental care, all of which can vary according to the mode of transportation (e.g., by foot or by water), locations involved in the migration journey (e.g., refugee camps, detention centers, or precarious housing across different countries), and the duration of the journey. FDPs may spend years or decades living in camps, with the average length of time estimated to be 17 years for the 1 in 5 refugees who stay in those circumstances. Finally, postmigration factors may include family and neighborhood context, social position, social support and exclusion, language competence, discrimination, acculturative stress, and potential for detention.²⁹

Neurologists should also adopt a trauma-informed approach. It can be particularly helpful to practice a strengths-based approach to care (e.g., recognizing that FDPs have drawn on significant strengths to have survived displacement and should not be reduced to their traumatic experiences), ask permission before discussing potentially difficult subjects to avoid retraumatization, and ensure that referral mechanisms are in place to treat trauma-related disorders that may arise in a clinical encounter.³⁰ Special populations include children, elderly patients, and pregnant patients. Women-led households, mature minors, and trafficked patients or those held against their will must be considered for any additional needs. Gender-based and sexual violence is a deliberate tactic of war, torture, and terror, and people with disabilities are especially at risk.³¹

Children may have little or no knowledge of their medical history and may have trouble articulating their needs. They may remain dependent on their caregiver to advocate for them, which can be difficult even for knowledgeable caregivers. Health care workers should document a child's clinical story as it unfolds and provide the child with that documentation to show to subsequent health care practitioners. The record should include what is known with confidence (e.g., this child has epilepsy and a recent infection), what is suspected (e.g., the events are most likely absence seizures), and what is not known (e.g., prior medications). Practitioners should consider and document who is with the child, who is acting as the child's caregiver, and any close loved ones they have recently lost. The clinical examination, acute findings, chronic issues, investigations completed, the results of those investigations, and future priorities for care should all be documented. Clinicians should be cautious about concluding a child's cognitive level of functioning. Children may be emotionally closed off to strangers, and assumptions cannot be made about baseline and current level of functioning without significant assessment by trained personnel. In addition, they may have had limited access to high-quality education.

Neurologists have an essential role in providing expedited documentation of patient visits and keeping accurate records to the best of their abilities.³² The dynamic nature of FDPs should lead to discussion about how to quickly provide a patient with medical records from the visit and whether neurologic follow-up is likely in the same location.

Several resources exist that may be helpful references when treating FDPs. Specific examples include online resources from the US Center for Disease Control and Prevention's Yellow Book, the European Centre for Disease Prevention and Control, the World Health Organization's mhGAP Humanitarian Intervention Guide, and the Global Polio Eradication Initiative. The UN Refugee Agency provides updates on current humanitarian situations and geographical context that may be helpful for neurologists who are unfamiliar with the circumstances that led a displaced patient to their care.

Unmet Needs

At a policy level, much needs to be done for FDPs, including those with neurologic disorders and the high number of people at risk for them. In addition to the overall lack of resources for FDPs, particularly in exhausted health systems, specific unmet needs of clinical relevance to neurologists include the following.

Roles of Health Care Organizations

Health care crisis response organizations—whether local, regional, national, or international—are often best equipped to deliver health care services for FDPs whose needs are not met by the host country's existing health care system. This is especially true in the acute phase of the response. Specialty societies, such as the AAN, have important roles to play in the care of FDPs through raising awareness, offering education, advocating for resources and policy, coordinating efforts, developing leadership initiatives, and supporting research and guideline development.

In addition to creating a platform for neurologists to communicate ongoing challenges and solutions, task forces and committees should serve as platforms for action. Global partnerships with neurologists, supranational agencies, and nongovernmental organizations in the humanitarian field must continue.^40,41 Data on neurologic needs and care in the United States for FDPs are sparse. Headache, sleep disorders, head trauma, and dementia predominated in 1 retrospective study of 779 resettled refugees with neurologic disorders.⁴² Many neurologists already care for FDPs in the United States in their daily practice, particularly neurologists in settings with higher numbers of resettled FDPs. Neurologists may also participate in the review of neurologic conditions in the form of medical affidavits. A retrospective cross-sectional study of 139 medical affidavits in the United States found that 43% of asylum seekers reported a history of head injury.⁴³ Dedicated services and resources at a national level specific to FDPs with neurologic needs have yet to be enshrined in the United States, leaving patients to the auspices of existing health infrastructure, individual advocacy groups, personal resources, and changing macro-level influences.

Health care workers, vaccinators, frontline aid workers, and medical facilities are sometimes the direct targets of armed conflict.^32,44,45 The safety and protection of people providing neurologic care must be prioritized as international organizations coordinate to address the needs of FDPs. Neurologists can be educated and prepared to maximize their personal safety and health in humanitarian settings. Given the changing landscape of forcible displacement, neurologists will continue to encounter FDPs, and many neurologists themselves could become forcibly displaced.