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Department of Psychiatry and Psychotherapy, Section for personality disorder and posttraumatic stress disorder, Campus Benjamin Franklin, Charité–Universitätsmedizin, Berlin, Hindenburgdamm 30, Berlin 12203, GermanyCharité–Universitätsmedizin Berlin, Corporate Member of Freie Universität Berlin, Humboldt-Universität zu Berlin, and Berlin Institute of Health. Department of Psychiatry and Psychotherapy, Campus Benjamin Franklin, Berlin, Germany
Oxford Epilepsy Research Group, NIHR Oxford Biomedical Research Centre, Nuffield Department of Clinical Neuroscience, John Radcliffe Hospital, Oxford OX3 9DU, United Kingdom
Data on prevalence and incidence of epilepsy and PNES in FDP is very limited.
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FDP are at higher risk of developing epilepsy because of infections, malnutrition and traumatic experiences.
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Diagnostic accuracy is hampered in FDP, and perhaps given the psychiatric comorbidities, the prevalence of PNES among those population might be high.
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Forcily displaced children with epilepsy are at higher risk of leaving school at early stages.
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Epilepsy and seizures are the leading cause of medical referral in FDP camps.
Abstract
With a growing number of forcibly displaced people (FDP) globally, the focus on their medical needs has necessarily increased. Studies about the prevalence and incidence of epilepsy and psychogenic non-epileptic seizures (PNES) in this population are, though, sparse. This Review highlights the importance of exploring and managing both conditions in these vulnerable people to promote global health.
We performed an exhaustive review of 10 databases, as well as a manual search of relevant websites related to global health and refugee-related organizations. We analyzed data related to the prevalence and incidence of epilepsy and PNES; health visits; costs of medical care and challenges faced by healthcare workers in relation to FDP with these conditions.
Fifty six papers met our inclusion criteria. Of these, 53 reported directly or indirectly on the prevalence of epilepsy and its costs in FDP. Two articles reported on the prevalence of PNES in forcibly displaced people. The reported prevalence of epilepsy in FDP varied from 0.2% to 39.13%, being highest in people with pre-existing neurological or psychiatric comorbidities.
Only one study reported on the incidence of epilepsy in internally displaced children. Data from the United Nations Relief and Works Agency for Palestine Refugees in the Near East (UNRWA) have identified a tendency to higher incidence of epilepsy in children following wars. While within displaced women without a history of sexual violence the rate of PNES was 16.7%, in FDP women with such a history the rate of PNES was 43.7% (p=0.02). The healthcare costs for epilepsy can be high, with recurrent health visits related to seizures being the most common cause of health encounters in refugee camps.
Increasing awareness and further studies of multicultural aspects to improve shared understanding of seizure phenomenon in vulnerable displaced populations would seem crucial.
At the end of 2019, 79.5 million people worldwide had been forcibly displaced; 45.7 million of these were internally displaced people (IDP), while 26 million were refugees. [
] The latter are either under the mandate of the United Nations High Commissioner for Refugees (UNHCR; 20.4 million) or the mandate of the United Nations Relief and Works Agency for Palestine Refugees in the Near East (UNRWA; 5.6 million Palestinian refugees). The term refugee describes people who have left their home countries and cannot return owing to fear of persecution, conflict, violence or other reasons that may compromise their lives and health, as defined by the first article, §2, of the convention related to the status of refugees adopted on the 28th of July 1951 by the United Nations Conference of Plenipotentiaries on the Status of Refugees and Stateless Persons [
]. IDP have not crossed the borders of their own countries, but have been forced to leave their homes for the same reasons as refugees. Asylum seekers, who number 4.2 million according to the UNCHR in 2019, are displaced people who are looking for refuge but whose request has not yet been processed [
Fig. 1Epidemiological aspects. Fig. 1a: top 5 of source and hosting countries of refugees: recapitulation of UNHCR Data. Fig. 1b: number of included publications per year reporting epilepsy or PNES among forcibly displaced people in the last three decades. Fig. 1c: number of publications in relation to countries of origin of forcibly displaced people included in the study. Fig. 1d: number of publications in relation to countries of asylum of forcibly displaced people included in the study.
Fig. 1Epidemiological aspects. Fig. 1a: top 5 of source and hosting countries of refugees: recapitulation of UNHCR Data. Fig. 1b: number of included publications per year reporting epilepsy or PNES among forcibly displaced people in the last three decades. Fig. 1c: number of publications in relation to countries of origin of forcibly displaced people included in the study. Fig. 1d: number of publications in relation to countries of asylum of forcibly displaced people included in the study.
Forcibly displaced people (FDP), 40% of whom are under the age of 18 years, have particular needs. That 73% of FDP are hosted in neighboring countries means 85% of the world's refugees live in resource limited nations [
]. Recently, though, Europe has experienced one of the largest influxes of refugees in contemporary history. Between 2015 and 2016, owing to wars in the Middle East and Asia, it is estimated that more than two million refugees sought asylum in Europe [
]. This recent population movement has posed health system challenges both for the displaced people and the nations receiving them, perhaps particularly for chronic health conditions associated with risk.
Epilepsy is one of the most prevalent neurological pathologies in the world, affecting around 50 million individuals [
]. It is therefore both challenging and essential to understand the impact of seizures among people moving from different cultures and contexts who may have very different religious and etymological beliefs from the local population with whom they hope to integrate. Also, owing to experiences of trauma and other vulnerabilities, the incidence of psychogenic non-epileptic seizures (PNES) might be significantly higher in refugee populations.
Epidemiological data are sparse for both epilepsy and PNES amongst refugees. The lack of such information may partly explain why neither epilepsy nor PNES are a specific focus in the WHO's 2019 global action plan “Promoting the health of refugees and migrants 2019-2023” [
]. To address this gap, we performed a comprehensive scoping review examining epilepsy and/or PNES in refugee populations.
1.2 Outcomes
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Primary outcome: to identify the regional prevalence and incidence of epilepsy and PNES in FDP.
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Secondary outcomes: to identify major psychiatric comorbidities, healthcare costs and difficulties in healthcare structures as pertains to FDP with epilepsy or PNES.
2. Methods
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Search strategy and selection criteria
Owing to the absence of specific articles about the topic, the heterogeneity of the available data and to the lack of standardized and adequate tools for quality assessment covering the different types of references we included (especially official reports), we were not able to perform a systematic review or a meta-analysis. We therefore decided to complete a scoping review with the aim of proving a comprehensive basis for future work on this topic.
We searched 10 principal databases: Pubmed, Web of Science (Web of Science Core collection, MEDLINE, SciELO Citation index, KCI-Korean Journal Database, Russian Science Citation Index), WHO (WHOLIS), Cochrane Library, Science Direct, PTSDpubs (formerly PILOTS), Applied Social Sciences Index & Abstracts (ASSIA), CINAHL, International bibliography of the social sciences (IBSS), and PsycInfo.
We then undertook a manual search of the UNHCR, UNRWA, and United Nations International Children's Emergency Fund (UNICEF) databases. We also examined the UNICEF Datasite, Migration Data Portal, Médecins sans frontières (MSF), the Global health data exchange (GHEx) of the Institute for Health Metrics and Evaluation (IHME). We hand- searched the gray literature in reference lists of identified papers and in excluded reviews or book chapters.
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Search terms
The following search terms were used in the databases: (epilepsy OR epileptic OR seizure OR convulsion OR convulsive OR (nonepileptic seizure) OR (non-epileptic seizure) OR (nonepileptic attack) OR (non-epileptic attack) OR (dissociative seizure) OR (pseudoseizure)) AND (refugee OR (asylum seeker) OR (asylum seeking) OR (displaced person) OR (displaced people) OR (forced migration)). No restriction regarding language, date of publication, study population, study type or location was applied. When searching the IBSS we made a restriction on topic and included only references related to medicine, public health, mental health, mental disorders, psychiatry, and case studies to avoid overlapping information.
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Title and abstract screening
Both authors screened titles and abstracts of retrieved references. Disparities were resolved through consensus. In addition to searching for articles containing the relevant keywords, studies reporting mental health issues in indigenous people, homeless people, ethnic minorities, immigrants, people from non-dominant cultures and marginalized backgrounds were considered eligible for full-text screening. Studies reporting (mental) health issues in people living in countries experiencing war, (post)conflict regions, regions related to terrorism, regions with past or high risk of natural disasters, and regions under control or threatened by violent organizations were also eligible for full-text screening as they could potentially report epilepsy and/or PNES in IDP. We also included, at this stage, studies performed in a multicultural setting, studies performed in people with special needs, and studies in vulnerable children and adults.
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Full-text screening
Both authors independently performed a full-text screening of the data and included articles corresponding to inclusion criteria. Discrepancies were resolved through discussion and consensus.
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Inclusion criteria
We included original studies (journal articles, conference abstracts, dissertations) with epidemiological and/or etiological data about epilepsy and PNES in forcibly displaced people, considered as such during the study. For epidemiological data we included prospective and retrospective cohort studies, cross-sectional studies, case-control studies with >10 cases and (randomized and non-randomized) controlled trials. Regarding etiology of seizures, we also included case studies with < 10 cases and case reports (presented separately). Any population considered as refugee, asylum seeker, or forcibly displaced was included. We included studies covering all potential reasons for forced displacement, including, but not limited to war, civilian conflict and natural disaster.
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Exclusion criteria
Editorials, brief reports, comments and articles without original epidemiological and/or etiological data were excluded. Studies where epilepsy cases were combined with other neurological or health issues or where the terminology was blurred, for example in relation to acute symptomatic seizures, were considered ineligible. We excluded studies without a clear differentiation between immigrants and refugees, as well as studies where it was not clearly mentioned if the studied population was refugee and asylum seeking. Studies performed in areas with high numbers of refugees without a clear differentiation between the local populations, war combatants, war injured people and forcibly displaced people were excluded. We also excluded studies where subjects had previously lived in refugee camps without being considered as refugees or forcibly displaced at the time of the study. Studies about Nodding Syndrome were excluded, since this entity is so geographically limited.
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Data extraction
We collected data from eligible studies in a database adapted to the study aims. We captured the first author's name; year of publication; location of study (for example of asylum or refugees’ camp); country of origin of the population; total number of study population; number of people with epilepsy (PWE) or PNES; and the number or percentage of PWE or PNES. In studies reporting other information related to epilepsy, such as health visits or costs related to seizures, data were extracted and reported accordingly. For case reports and case studies we reported separately the first authors’ name, year of publication, country where the study took place, country of origin, etiology of epilepsy or PNES, and the clinical course. Articles in languages other than English were translated by native speaking colleagues and online translation aids.
3. Results
3.1 Article selection process
The database search yielded 3381 references on 20th June 2020. After the automatic removal of 289 duplicates, we manually removed another 93 duplicated references not identified by Endnote. Title and abstract screening of the remaining 2999 references excluded 2551 studies. Of the remaining 448 potentially relevant full-text articles, 414 did not meet inclusion criteria. The separate manual search identified 21 more records (three articles, one abstract and seventeen annual health reports (UNRWA: n=16 and UNHCR: n=1). Among the included articles, 27 were journal articles (cross-sectional and cohort studies), three were abstracts, seven were case reports (one of these being a case series with two relevant cases). We actualized the database search on 09th January 2021 and were able to add one more recent relevant article. Another article was considered to be overlapping as relevant information was published by the same authors previously. These steps yielded a total of 56 articles that were included in this review (Fig. 2 – Flow diagram).
Although we did not exclude articles based on language in the initial search, all included articles were published in English. Included references, tallied by year of publication, are summarized in Fig. 1b. Quantitative geographical distribution of the origin of refugees and their location during the studies is shown in Fig. 1(c and d, respectively).
Part 1: Prevalence and incidence of epilepsy and PNES among the forcibly displaced people
A total of 21 articles investigated prevalence/incidence of epilepsy or PNES in FDP. Eighteen studies reported directly on the prevalence of epilepsy in refugees; [
The health profile and chronic diseases comorbidities of US-bound Iraqi refugees screened by the International Organization for Migration in Jordan: 2007-2009.
Health profile of pediatric Special Immigrant Visa holders arriving from Iraq and Afghanistan to the United States, 2009-2017: a cross-sectional analysis.
Chaaban J., Ghattas H., Habib R., Hanafi S., Sahyoun N., Salti N., et al. Naamani Socio-economic survey of Palestinian refugees in Lebanon. Report published by the American University of Beirut (AUB) and the United Nations Relief and Works Agency for Palestine Refugees in the Near East. (UNRWA) 2010.
Children + adults Sex: F:M=107:114 Age: 34 y (3 weeks to 90 years)
n=221 (total refugee population n=10,000)
n=23
10.4%
Epileptic fits
Clinicians
Specific population with neurological symptoms from endemic and non-endemic areas of T.solium
The study took place between September and October 1986. From 10,000 refugees, people with a history of neurological symptoms were included for a serological diagnostic test. Among the included 221 refugees; 10.4% had epileptic seizures (22 cases with Jacksonian seizures, and 1 with temporal epilepsy). People from non-endemic areas of T.solium presented with more epileptic seizures than those from endemic areas (11.1% vs. 8%).
The study reports the findings of health examinations in children living in refugee camps in Algeria adopted temporarily by Spanish families from 1993-1997.
Children + adults Sex: F: 36.7% Mean age: 29.7 ± 7.6 y (16 to 58 y)
n=397
n=9
2.3%
Fits and seizures
Surveys
Non-specific / general refugee population
The study reports the results of a health needs assessment questionnaire given to newly arrived asylum seekers from April 2000 and for 2 years. The study took place in Sunderland and North Tyneside in UK.
Adults Sex: F:M=244:808 Age, average: 41.7 ± 12.5 y 41.5 ± 12.5 y
Tortured n=526 Non-tortured n=526
n=3 n=13
1% 3%
Epilepsy
Clinicians
Mixed refugee population (tortured and non-tortured)
The study compares somatic symptoms of tortured and non-tortured Bhutanese refugees in UN refugee camps in Nepal. Contrary to other studies, the prevalence of epilepsy in tortured refugees here is lower than in non-tortured refugees.
Children with Epilepsy Sex: F:M=37:35 Age: 6.7 ± 2.3
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n=72
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Epilepsy
Surveys
IDP children
The study compares children with epilepsy coming from war-affected areas with those coming from regions not affected by war. Since Osijek and Zagreb received large number of IDP during the war, we consider the 72 war-affected children from these regions as IDP. The frequency of epileptic seizures, and especially generalized seizures was higher in IDP. Occurrence of first epileptic seizures during the war was higher in IDP (n=16 vs. n=4). Cases with PNES were excluded.
Special refugee population with psychiatric comorbidities
The study reported the prevalence of “seizures” among American Iraqi refugees who were seeking mental disorders services. Information was recruited in form of questionnaire. Psychiatric comorbidities: In this study, 33 had PTSD (28.4%), 26 had depression (22.2%), 18 had other psychiatric disorders (15.5%), and 39 were with non specified psychiatric disease (33.6%). Epilepsy was higher among those with unknown psychiatric disease (20.5% vs 6.1% in those with PTSD).
The health profile and chronic diseases comorbidities of US-bound Iraqi refugees screened by the International Organization for Migration in Jordan: 2007-2009.
Health profile of pediatric Special Immigrant Visa holders arriving from Iraq and Afghanistan to the United States, 2009-2017: a cross-sectional analysis.
Special refugee population with psychiatric comorbidities
The study reports asylum-seeking children with severe loss of ADL in the period between March 2005 and December 2007. Among them 12 committed suicide attempt after arriving to Sweden, 21 reported traumatic experiences, and 20 suffered loss of relatives or separation. Epilepsy was incidentally diagnosed in one case.
Chaaban J., Ghattas H., Habib R., Hanafi S., Sahyoun N., Salti N., et al. Naamani Socio-economic survey of Palestinian refugees in Lebanon. Report published by the American University of Beirut (AUB) and the United Nations Relief and Works Agency for Palestine Refugees in the Near East. (UNRWA) 2010.
Adults+ Children Sex: F: 53% Average age: 30 years old
-
-
2.62%*
Epilepsy
Surveys
Non-specific / general refugee population
The study took place between late July and early August 2010. It is a report based on a nationally representative survey, covering 2,627 Palestinian refugees’ households in Lebanon. *only the percentage of people with epilepsy in relation with people with chronic illness is reported.
Special refugee population with psychiatric comorbidities
The study is a brief UNHCR report about refugees’ mental health and support in Yemen by the end of 2010. The study took place before the war in Yemen. The intervention had as target to promote mental health care in refugees in Basateen and Kharaz refugee camps. *Among selected 691 refugees with “mental health disorder”, 10% of them were followed up for epilepsy. It is unclear how many refugees were registered during the same period of time in those camps. Psychiatric comorbidities: Severe emotional disorder was reported in 49.9%, and psychotic disorder in 16.9% of cases.
Middle east: 56.5% Africa: 18.6% South Asia: 11.9% Latin America: 11.9% Asia Pacific: 0.6% Europe: 0.6%
Adults Sex: F: 41.2% Age: Median: 31 y
n=180
0.6%
Seizure
Clinicians
Non-specific / general refugee population
In this study is retrospective medical record review, and the term “refugee” represents refugees, their family, and special immigrants whose status is similar to refugees. Data collection took place at a medical center in mid-sized city in the northeast of USA which provides medical screening to newly arriving refugees to USA.
Children + adults Sex: F: 49% Age: Mean 41 y (1-94 y)
n=1,328
n=167
12,6%
Epilepsy
Clinicians
Special refugee population (Iraqi with neurological disorder and registered in UNHCR)
The study took place in 2010 and reports information through the Refugee Assistance Information System (RAIS) in Jordan. *The source population is formed of 7,642 refugees who received health insurance for any diagnosis in Jordan in 2010. Among them, 1,328 are Iraqi refugees (17% of all refugees in RAIS). One case of “convulsions not otherwise classified” was reported in this study but not included in our review. A history of torture was self-reported in 5% of Iraqi refugee with neurological diagnosis, while 3.1% reported torture without presenting neurological diseases. Individuals with disability in this study represented 10% (n=133); among them 20% have Epilepsy.
The health profile and chronic diseases comorbidities of US-bound Iraqi refugees screened by the International Organization for Migration in Jordan: 2007-2009.
Children + adults Sex: M:49.7% Age: 25.8%: <15 y 54.7%: 15-45 y 19.4%: >45 y
n=18,990
n=44
0.2%
Epilepsy
Clinicians
Non-specific / general refugee population
Te study reports results of medical screening of 18,990 Iraqi refugees in Jordan applying for resettlement to the USA through UNHCR in Jordan. The screening took place at International Organization of Migration clinics in Jordan from June 2007 to September 2009. Among those refugees, 0.2% have mental retardation, and 0.2% have PTSD.
The study reports risk of burnout, secondary trauma and dissatisfaction among humanitarian health providers (n=271) working with displaced Syrian adolescents in Jordanian refugee camps who felt themselves undertrained and requested more training and support. The study used mixed qualitative and quantitative methods, but it is unclear if diagnosis epilepsy was clinically assessed.
Children Sex: F: 46.94% Mean age: 10.92 ± 3.19 years
n= 967
n=98
10.13%
Epilepsy
Surveys
Children visiting hospital for any health condition were studied.
The cross-sectional study reports the prevalence of epilepsy in refugee children who presented to a state hospital in the Turkey between January 2016 and January 2018. All children live in refugee camps. The results were acquired through surveys filled by children themselves. Psychiatric comorbidities: 0.82% reported low PTSD, 7.65% moderate PTSD, 20.16% heavy PTSD, and 71.35% very heavy PTSD symptoms. The 92.65% of study population reported being separated from their families during the war, 94.10% reported that one family member died; 69.28% lost their father and 73.62% lost their mother.
The study reports the psychiatric morbidity among physically injured Syrian refugees at rehabilitation's center in the Turkey during one week in December 2012 and one week in August 2013. Psychiatric comorbidities: among injured Syrian refugees, 22.5% had current major depressive episode, 15% had current PTSD, 20% had current adjustment disorder, 5% had current anxiety disorder, and conversion disorder was reported by 2.5% of cases.
The data were collected between July 2017 and October 2018 among Syrian and Iraqi refugees in Germany. The study assessed children and mothers’ hair cortisol concentration and PTSD symptoms. Psychiatric comorbidities: Children with PTSD scores above the cutoff value represented 39%.
Health profile of pediatric Special Immigrant Visa holders arriving from Iraq and Afghanistan to the United States, 2009-2017: a cross-sectional analysis.
The cross sectional study reports results of medical screening of pediatric special immigrant Visa holders (SIVH) originating from Iraq (29.1%) and Afghanistan (70.9%) from April 2009 to December 2017. SIVH are eligible for refugee health benefits in USA. The study showed that Iraqi (0.8%) have significantly more seizure disorder than Afghan (0.1%) refugee.
The prospective study took place in Bosnian refugees located in Croatia during the war in the region. The follow up took 3 years from 1996 to 1999. Only 70.4% of the cohort was met at the endpoint of the study. The proportion of PWE is lower at the endpoint (1%).
In a group of 152 FDP resettled in Hannover-Germany, 112 presented PTSD symptoms and 58 of them had a dissociative subtype of PTSD. In this group, females were predominant and showed higher risks of self-injuries, and suicidal ideations.
Women Age group 1: 25.61±2.61 y (18 to 34 y) Age group 2 (control) 26.24±2.46 y (18 to 36 y)
n=124 n=64 60
n=34 n=24 n=10
27.9% 43.7% 16.1%
Dissociative seizure
Clinicians
IDP in Iraq
Yazidi Women with PTSD who experienced sexual violence (n=64) during their captivation by ISIS in Syria or Iraq for at least 1 year from August 2014 to September 2018 had significantly higher rates PNES (n=24, 43.7%) than Yazidi women from the same camp with PTSD but without experience of captivation or sexual violation (n=10, 16.1%). All participants were living in refugee camps in Northern Iraq at the time of the study.
D-PTSD: dissociative posttraumatic stress disorder, IDP: Internally Displaced People PNES: Psychogenic Non-Epileptic Seizures, Ref.: Reference.
The health profile and chronic diseases comorbidities of US-bound Iraqi refugees screened by the International Organization for Migration in Jordan: 2007-2009.
The health profile and chronic diseases comorbidities of US-bound Iraqi refugees screened by the International Organization for Migration in Jordan: 2007-2009.
The health profile and chronic diseases comorbidities of US-bound Iraqi refugees screened by the International Organization for Migration in Jordan: 2007-2009.
Chaaban J., Ghattas H., Habib R., Hanafi S., Sahyoun N., Salti N., et al. Naamani Socio-economic survey of Palestinian refugees in Lebanon. Report published by the American University of Beirut (AUB) and the United Nations Relief and Works Agency for Palestine Refugees in the Near East. (UNRWA) 2010.
Data were then segregated by age into adults (> 18 years) and children (Fig. 4a). In the adult refugee population, the prevalence of epilepsy ranged from 0.6% [
Fig. 4Demographic aspects of study populations. Fig. 4a: age repartition in years in displaced people with epilepsy. Fig. 4b: sex repartition in displaced people with epilepsy.
In pediatric refugee populations that did not have any other specific health condition, epilepsy affected 0.3% to 2.3% of children. The prevalence was 0.3% in pediatric special immigrant visa holders in the USA originating from Iraq and Afghanistan [
Health profile of pediatric Special Immigrant Visa holders arriving from Iraq and Afghanistan to the United States, 2009-2017: a cross-sectional analysis.
]). The gender distribution was almost equal in other mixed studies and in pediatric studies.
3.3 Incidence of epilepsy and recurrence of epileptic seizures
Only one identified study specifically examined the incidence of epilepsy, this being performed during the war in Croatia. The authors collected data from Osijek and Zagreb, where a large number of displaced people from war–occupied areas were living. We, therefore, considered children from these war-affected areas as IDP. Among IDP from war-affected area (n=81), sixteen people experienced their first seizure during the war, while in IDP from non-affected areas (n=63) only four children were newly diagnosed with epilepsy [
]. Children from war-affected areas had more seizures, particularly convulsive seizures, compared to the control group. Many children from a war-affected region who had “stable” epilepsy before the conflict, became “unstable”. Children from unaffected areas showed no change in seizure profile. Adherence in taking antiseizure medications (ASMs) was not different between these two groups. In this small study, war-related stress, separation from parents during the war and displacement were associated with adverse impact on seizure control in children with epilepsy as well as elevating the risk of developing epilepsy.
3.4 Data from annual reports of UNRWA
We analyzed all 14 annual reports of UNRWA from 2006 to 2019 where the prevalence of epilepsy among Palestinian refugee school children in all UNRWA schools inside and outside Palestine (Gaza, West Bank, Jordan, Syria, and Lebanon) is detailed (Table 2) [
Chaaban J., Ghattas H., Habib R., Hanafi S., Sahyoun N., Salti N., et al. Naamani Socio-economic survey of Palestinian refugees in Lebanon. Report published by the American University of Beirut (AUB) and the United Nations Relief and Works Agency for Palestine Refugees in the Near East. (UNRWA) 2010.
Fig. 5Prevalence of epilepsy according to UNRWA's database. Fig. 5a: prevalence of epilepsy in schooled children under UNRWA's mandate. Fig. 5b: prevalence of epilepsy among schooled children with special health needs under UNRWA's mandate.
]. The second included study explored the repercussions of sexual violence on Yazidi women and compared women who had experienced captivation and sexual violence to those living in the same refugee camps, but without such a history. While 43.7% of women with history of sexual violence experienced PNES, in women without a history of sexual violence the rate of PNES was 16.7% (p=0.02). The overall prevalence of PNES in both groups was very high (27.9%). Notably, the two groups did not show significant differences for affective disorders, anxiety and somatoform disorders although the overall prevalence of these pathologies was also high (72.1%, 59.0%, and 54.1% respectively) [
Assessment of the knowledge, attitudes, and practices among UNRWA health staff in Jordan concerning mental health programme pre-implementation: a cross-sectional study.
The profile of health problems in African refugees admitted to Sicilian hospitals from Lampedusa, since the beginning of the 2011 humanitarian exodus (1 January to 22 September).
The profile of health problems in African refugees admitted to Sicilian hospitals from Lampedusa, since the beginning of the 2011 humanitarian exodus (1 January to 22 September).
Assessment of the knowledge, attitudes, and practices among UNRWA health staff in Jordan concerning mental health programme pre-implementation: a cross-sectional study.
The profile of health problems in African refugees admitted to Sicilian hospitals from Lampedusa, since the beginning of the 2011 humanitarian exodus (1 January to 22 September).
The study reported data between 1st January and 22 September 2011 and reports data about 203 African refugees were transferred by emergency helicopter service from Lampedusa to Sicilian hospitals. In seven cases seizures motivated the medical transfer. Demographic information: Sex: males=112, females=91 Median age: 25 years old (1 – 68 y) Suicide attempts in other 25 cases.
The study reports data collected during health visits with refugee assistance information system (RAIS.) In 2010, 27,166 health visits were provided to 7,642 from totally 36,944 UNHCR-registered Iraqi refugees in Jordan. The mean number of visit per refugee was 3.6. In the age group 12-17 (n=451), 5.9% received health assistance; 6% of those visits were related to epilepsy.
Syria (57%) Iraq (36%) Sudan, Somalia, Egypt and Yemen (7%)
Total applications n=2,526 n=223*
n=11* (4.93%)
The study reports the results of a retrospective evaluation of care applications to the Exceptional Care Committee (ECC) from 1st January 2012 to 31th December 2013. *n=223 refers to refugees who applied to ECC for neurological and psychiatric care costs. Demographic information: Sex: 27% of refugees with epilepsy were females Median age: 35 years
According to the annual health report of UNRWA in 2016, during 39,858 health visits to UNRWA clinics, 25 refugees were newly diagnosed* with epilepsy in 2016.
The study took place on August 12th, 2015. It is a descriptive case report of a single mass-gathering event of 4,000 newly arrived Arabic-speaking refugees to Kos island and the emergency medical care provided to 49 of them by MSF during this event. The study does not report the prevalence of Epilepsy in refugees, but just the occurrence of seizure in one case during an event needing intervention. Demographic information: Examined refugees by MSF team: n=49 (4 were referred to hospital, among them the only case with epileptic seizures). Average age: 25 years (4 months to 52 years)
n=20* Health visits: 1026 (with 944 single health visit/ person), 30% children.
n=3* (15%)
The study took place between 30th March 2016 and 15th May 2016. This is a cohort study and we report here times an ambulance was called (for emergency n=20). In three cases the ambulance call was motivated by “seizures”, thus not specified if those were epileptic seizure (or seizures in people with Epilepsy) or seizures with other etiology. Demographic information: Total refugees in the camps during the same period: n=2291 Among them 28% aged < 18 years 42.7% travelling alone, 57.3% with family
The study reports data between 1st of July 2015 and 28th February 2016 about refugees who presented with neurological symptoms to the emergency room in University Hospital in Berlin. Nonepileptic seizures (n=11.11%) Symptomatic epileptic seizures (n=4.4%) Demographic information Sex: Male: 75% Age: 33.2 ± 1.3 years old
The cross-sectional study took place between 14th September 2015 and 31th December 2016. Terminology: “asylum seeker” refers here to refugees (who received formal asylum) and those who have applied for asylum. Demographic information: Sex: 71.5% males, 28.5% females Age: median=25 (1-87 years old) The study reports epilepsy only among refugees who searched medical help in this specific refugee clinic.
Assessment of the knowledge, attitudes, and practices among UNRWA health staff in Jordan concerning mental health programme pre-implementation: a cross-sectional study.
The study was performed among healthcare givers (n=220) working in UNRWA health centers in Jordan during 2017; 50% of them reported dealing with mental health cases is difficult. They reported that the most difficult conditions they faced were: depression (84%, for 150 of 220 workers) and epilepsy (64%, for 140 of 220 workers).
The study reports number of consultations for mental, neurological and substance use conditions as registered in the health information systems of Nayapara registered camps as well as Kutupalong registered and non-registered camps in the period between June 2018 and February 2019. Epilepsy and seizures caused almost 50 visits in the Nayapara camp and almost 110 visit in the camps of Kutupalong. Interestingly in both regions more females consulted for epilepsy/seizures than males, and those diagnosed were mainly between the age of 5 and 17 years.
The study reported data from 2011 to June 2019 about refugees coming to Lampedusa and referred to Sicilian hospitals. Demographic information: Sex: males=440, females=335 Mean age: 25 years (children represented 10%) (Pseudo-)Suicide attempts in other 25 cases.
The study reports the data collected by the UNHCR web-based Health Information System (webHIS) in 19 countries and 127 refugee camps. Around 1.6 million displaced people are covered by this system. The study covers the period between 2008 and 2011, thus reporting of epilepsy cases started in July 2009. In 2011, five neurological diseases were reported by webHIS, and they globally accounted for 31,349 health visits, among which 91% were for Epilepsy. Demographic information: during all years, 48% of the total 53,941 health visits for epilepsy were reported in women. < 5 years old: 7.3% (n=3,964 visits) 5-17 years old: 42.1% (n=22,736 visits) 18-59 years old: 41.7% (n=22,489 visits) >60 years old: 1.3% (n=719 visits) In 7.5% (n=4,038 visits) was the information about age unavailable.
Country of camps
No. of reporting refugee camps
No. of health visits for Epilepsy per 1,000 camp-months
The study reported all MNS health visits recorded through HIS from January 2009 to March 2013 in 90 refugee camps located in 15 countries. Epilepsy or seizures motivated 40.6% of MNS visits. Demographic information: N of visits for Epilepsy in males: 45,905 (46.9%) < 5 years old: n=3,854 (82.7%) 5 and above: n=42,051 (45.1%) N of visits for Epilepsy in females: 40,009 (35.1%) < 5 years old: n=2,700 (82.3%) 5 and above: n=37,309 (33.7%) MNS visits were recorded in 2.7% of cases to people with disability or mental retardation.
Total n= 15 countries
Total n=90 camps
1,868,959
211,728
40.6%
Liberia
3 camps
23,420
229
15.7%
Nepal
7 camps
109,692
9,966
22.3%
Burundi
3 camps
24,682
2,043
43.4%
Tanzania
2 camps
99,484
26,858
77.2%
Djibouti
1 camp
14,461
1,141
38.6%
Yemen
3 camps
59,630
1,750
15.6%
Kenya
6 camps
513,306
23,846
37.5%
Rwanda
3 camps
50,728
1,723
40.8%
Thailand
9 camps
143,839
7,662
42.6%
Namibia
1 camp
6,642
180
39.1%
Chad
23 camps
371,835
5,614
47.0%
Uganda
9 camps
140,447
3,016
36.8%
Ethiopia
12 camps
229,672
1,636
34.7%
Bangladesh
3 camps
43,272
96
19.2%
Zambia
4 camps
37,847
154
59.0%
HV: Health visits, UNRWA: United Nations Relief and Works Agency, MSF: Médecins Sans Frontières, MNS: Mental, Neurological, and Substance use problems.
The profile of health problems in African refugees admitted to Sicilian hospitals from Lampedusa, since the beginning of the 2011 humanitarian exodus (1 January to 22 September).
The profile of health problems in African refugees admitted to Sicilian hospitals from Lampedusa, since the beginning of the 2011 humanitarian exodus (1 January to 22 September).
Assessment of the knowledge, attitudes, and practices among UNRWA health staff in Jordan concerning mental health programme pre-implementation: a cross-sectional study.
Of health visits to a medical facility, the proportion related to epilepsy was 1% in refugees seeking general medical help in a special clinic for refugees in Germany [
Health visits related to PNES, reported in one study from Germany, represented 11.1% of emergency health visits related to neurological symptoms. In the same study, 7% of health visits were related to epilepsy [
]. The remaining case report described probable focal epilepsy with that patient showing symptoms of post-traumatic stress disorder and dissociation, which resolved with antiseizure medication [
Symptoms: Generalized tonic-clonic seizures and an episodic left hemianasthesia for nine months. Evolution: Well 6 months after operation and medication
Symptoms: intermittent frontal headaches and twitching of the right hand for 2 months, weight loss. On admission status epilepticus. Evolution: well after 3 months follow-up and after Eflornithine therapy
1- Symptoms of the patient: severe debilitating occipital headache, generalized tonic-clonic seizures Evolution of the patient: difficulties to control epilepsy and short-term memory deficit. 2- Symptoms of her son: recurring tonic-clonic seizures for 3 years. Evolution of son: commenced antiepileptic medication
Symptoms: seizures 2 months earlier, lower extremity weakness, and respiratory symptoms. Evolution: residual left-sided weakness at 1 year follow-up, with normal development
Symptoms: PTSD and dissociation after traumatic experience in Pakistan with an incidentally diagnosis of Epilepsy through EEG and without clinical seizures. Evolution: Resolution of psychiatric symptoms after treatment with Lacosamide.
Assessment of the knowledge, attitudes, and practices among UNRWA health staff in Jordan concerning mental health programme pre-implementation: a cross-sectional study.
]. In one report, humanitarian health providers working with displaced Syrian adolescents in Jordanian refugee camps were found to be at high risk of burnout, secondary trauma and dissatisfaction. Case managers felt inadequately trained to assess mental health in young refugees; some of whom had either intellectual disability (3%) or epilepsy (2%) [
]. In a study among healthcare workers in Jordanian UNRWA health centers, 50% reported that dealing with mental health cases was difficult. Epilepsy was also reported to be one of the more demanding conditions they were confronted with [
Assessment of the knowledge, attitudes, and practices among UNRWA health staff in Jordan concerning mental health programme pre-implementation: a cross-sectional study.
A third study reported difficulties occurring during mass gathering of 4,000 newly arrived Arabic-speaking refugees during registration on the island of Kos. Analysis of this single event showed that medical emergencies were common (n=49), and among those was a seizure which needed monitoring and transfer to a hospital. Difficulties in communication, either because of language barriers or because of problems with organization, were found challenging by the Medicins sans frontiers team trying to deliver medical care, and stressful to interpreters not used to such acute conditions [
To our knowledge, this is the first study that specifically reviews the prevalence, incidence, health costs and etiology of epilepsy and PNES in FDP. Seizures are common and may be over-represented in vulnerable populations. Disentangling the causes of seizures, particularly being able to distinguish epileptic from non-epileptic attacks, is crucial. This can, though, be difficult in adverse situations, such as refugee camps.
Age groups of included populations ranged from infants to the elderly while some adult and mixed studies included a higher proportion of males than females.
4.1 Forcibly displaced people and epilepsy
There is a wide variance in the reported prevalence of epilepsy in forcibly displaced populations, with particularly high prevalence in those with neurological pathologies, from areas with endemic Tanea Solium or with psychiatric co-morbidity [
]. More people with epilepsy live in low- and middle income countries (LMICs; 139 per 100.000) than in high-income nations (49 per 100.000) and individuals with epilepsy from LMICs represent 80% of the global population with epilepsy [
]. Except in 2010, the prevalence of epilepsy among newly schooled refugee children in UNRWA schools was almost 10 times higher than in all schooled children [
]. It may be explained, at least in part, by refugee children with epilepsy leaving school earlier. In addition to the epilepsy and its impact on cognition, other factors such as seizure occurrence in school (potentially due to lack of medication, sleep difficulties and malnutrition); medical and school costs; association with other illnesses; stigmatization and lack of support could all contribute to refugee children stopping formal education early. It would therefore seem crucial that all relevant risk factors are modified. Refugee children should have regular access to ASMs and be provided necessary medical follow-up/psychological support since they are at higher risk of stigmatization and cognitive decline.
It is unclear why the prevalence of epilepsy among UNRWA schooled children was much higher in 2010 without a concomitantly higher number of other disabilities. Comparing these findings with experiences during the war in Croatia [
], and noting that there was a major conflict in Gaza during 2008-2009 (Operation Cast Lead), one possibility is that the traumatic stresses related to war could have contributed to new cases of epilepsy. The same conclusion could be drawn from the relatively higher prevalence in 2015 (0.07%), after the war in Gaza during 2014 (Operation Protective Edge). The findings of UNRWA are collected from Palestinian refugees located in different countries and it is therefore not possible to determine if the prevalence of epilepsy was higher only in Gaza. It may, though, be possible that higher levels of psychosocial stress are experienced in all Palestinian children during times of conflict in Gaza.
4.2 Disability and epilepsy in forcibly displaced people
Epilepsy is highly prevalent in individuals with disability [
] correlated with rates recorded in severe and profound learning disabilities, and corresponds to the cumulative risk of developing epilepsy in people with cerebral palsy at 22 years of age [
]. According to UNICEF, during armed conflicts, children with disability are at high risk of violation and their families are confronted with greater economic difficulties [
]. The prevalence of epilepsy could be higher in IDP with physical difficulties who may have additional barriers when escaping, for example when crossing borders, and have less access to medication. Therefore, there needs to be increased awareness of medical needs and vulnerabilities in this particular population.
4.3 Medication and adherence
No identified article primarily reported on adherence to ASMs amongst FDP with epilepsy. Patients might withdraw from ASMs if they are not aware of their importance, if they do not have access to medication or because of a fear of side effects [
]. Potential stigmatization through the need for additional medication and a perception that this may adversely influence claims for asylum, may also result in non-adherence. Good communication in native language and a prior understanding of the potential cultural barriers opposing medication as a treatment for seizures could help promote the adherence to ASMs among refugees with epilepsy.
4.4 Health visits
Epilepsy has high associated health care costs and displaced people with epilepsy should have their medical needs covered to reduce associated health and social complications. While it is unclear if all of reported seizures leading to health visits, especially in refugee camps, were epileptic, our findings highlight the costs of seizures in the medical care of refugees. The high recurrence of seizures in vulnerable populations should stimulate more medical support and specific training for campstaff to learn how to manage seizures in acute settings and avoid unnecessary hospital referrals.
Studies from the United Kingdom and United States have revealed that women with epilepsy are at higher risk of having obstetric complications and of maternal mortality [
]. Being a woman with epilepsy, a refugee and pregnant would therefore seem especially daunting. Control of seizures during pregnancy may be particularly difficult if refugee women are facing displacement as well as a lack of access to ASMs or regular prenatal care. In one UNRWA report, a maternal death was related to epilepsy [
]. More data are needed to better understand the needs of pregnant refugee women living with epilepsy.
4.5 Aetiology of epilepsy
Various risk factors for epilepsy were identified in studies from sub-Saharan Africa. These included genetic factors (6–60% vs. 5% in the USA); previous febrile seizures (6–38%); adverse perinatal events related to birth injuries and sequelae (2%-65%); head injury and CNS infections, especially malaria, toxocariasis, cysticercosis, and onchocerciasis [
]. As populations age across the world, stroke and dementia are increasingly common causes of epilepsy, including in LMICs where populations are ageing up to three times more quickly than in developed economies [
The etiology of epilepsy was mainly reported in the case reports. Such publications tended to report rare pathologies in a specific population or country. The included cases described infectious central nervous system diseases manifesting with clinical seizures in refugees mainly resettled in the USA and Australia. Case reports, therefore, are unlikely to reflect the prevalence of common etiologies of epilepsy in refugees and further work is needed to address this. The case reports do highlight the importance of being aware of infections that may be rare in the receiving country, but common in the refugee's country of origin.
In case of a diagnosed infectious disease it is important to exclude infection in other family members. One report described the case of a refugee mother and her son - both had seizures due to neurocysticercosis [
]. The son's illnesses were hidden by the family out of fear of not being granted asylum. As such, the son experienced seizures for at least 3 years without treatment.
The outcome in the included case reports is generally positive. This could be secondary to publication bias, and should not be understood as a representative finding. Larger cohorts are needed to better reflect the impact of infectious central nervous system diseases in vulnerable populations, especially with limited access to healthcare systems.
4.6 Forcibly displaced populations and PNES
Only a few studies have explored PNES in FDP. We included two studies detailing dissociative symptoms in FDP [
Yazidis are considered an ethnic minority living in Northern Iraq, mainly in the Sinjar area, and were targeted by terrorists of the so called Islamic State after their invasion of Syria and Iraq. While Yazidi men were tortured and assassinated in front of their families, Yazidi women were enslaved, sexually abused and sold in human markets [
]. This brutal experience may explain the reason why studied women were at very high risk of developing dissociative disorder, which also correlated significantly with PTSD symptoms and suicidal ideation. The prevalence of affective disorders, anxiety and somatoform disorders was also high. Notably, even though sexually abused women had more generalized dissociative disorder than those who were not abused, the difference was not significant between groups. The only significant difference in relation to sexual abuse was the risk of presenting with PNES.
Whilst there are no published data about the prevalence of PNES in LMICs, studies from high income countries shows an incidence of PNES of 3.1 per 100 000 per year in Norway [
]; 1.4 per 100,000 per year in Iceland; 4.9 per 100,000 per year in Scotland; and 3 per 100,000 per year in USA. The estimated prevalence of PNES in USA in 2019 was 108.5 per 100,000 [
]. Based on findings from Tanzania, South Africa and Namibia, PNES in African countries and in LMICs in general seem to be underdiagnosed and underreported [
Psychogenic non-epileptic seizures among patients with functional neurological disorder: a case series from a Tanzanian referral hospital and literature review.
], only 21.7% of low-income countries can offer long-term video-EEG (vs. 77.1% high-income countries) and only 20.6% had access to MRI, which is almost ubiquitous in high-income settings [
]. The diagnostic accuracy in studies from LMICs and especially amongst FDP might therefore have many limitations.
Given that PNES can be very common in refugee populations, particularly in vulnerable people who may have been subject to sexual violence, it will be important to provide tools to help distinguish PNES from epileptic seizures and avoid unnecessary exposure to ASMs. It is also imperative to enable access to better psychiatric/psychological care, particularly given the higher risk of suicide and PTSD related to this condition [
4.7 Difficulties in working with refugees with seizure disorder
Epilepsy is a “hidden illness” and affected people may prefer not to reveal their condition because of fear of stigmatization and sometimes because of mystic beliefs [
]. Witnessing a convulsive seizure can be traumatic to people without a medical background or special training and may lead to fear, helplessness and anxiety [
]. Interviewed healthcare providers and case managers working with displaced Syrian adolescents reported a high risk of burnout and secondary trauma among themselves. Lack of training and support in helping with people with medical conditions, including epilepsy, was reported as main reason for exhaustion [
]. Similarly, UNRWA healthcare workers reported that managing people who had mental health issues and epilepsy was particularly challenging. Better training and clearer guidelines in deploying the mental health and psychosocial support (MHPSS) program as implemented by UNRWA would seem necessary to improve the diagnosis and management of mental health among refugees and aligned healthcare professionals [
Assessment of the knowledge, attitudes, and practices among UNRWA health staff in Jordan concerning mental health programme pre-implementation: a cross-sectional study.
] If the type of seizure the person is experiencing, or had in childhood (for example only febrile seizures), is not communicated accurately, the retained diagnosis can be misleading. In refugee settings, prior medical reports may be written in another language or be missing. Independent interpretation would therefore seem essential. Appropriate training is also needed in order to avoid distress among interpreters during emergency responses. Prior logistic preparation may lead to better outcomes and reduce interpretation errors. The importance of language assistance was reported in many of the studies presented here. In the refugee clinic in Dresden, for example, assistance with Arabic, Fersi and Dari was often requested [
Owing to the high influx of refugees during the last decade, some European countries have had to adapt their healthcare systems to respond to new needs either by providing additional infrastructure [
The profile of health problems in African refugees admitted to Sicilian hospitals from Lampedusa, since the beginning of the 2011 humanitarian exodus (1 January to 22 September).
]. Refugees may, though, still face difficulties with healthcare access. For example, Afghan refugees, who have a similar culture to Iranians and may speak Farsi, felt discriminated and isolated during their contact with Iranian health institutions [
]. Treating refugees in appropriate settings with better awareness of transcultural backgrounds and responding to the special needs of a refugee population may help improve prognosis, increase adherence to treatment and reduce the need for emergency medical interventions. As such these methods can also be cost saving.
4.9 Limitations
Several factors made data-gathering for this study very challenging. First, terminologies were often not clearly differentiated. We therefore took a broad and inclusive approach. Studies were included if epilepsy was mentioned, provided this was not in reference to acute symptomatic seizures. The words “seizure”, “fits”, and “epilepsy” were confounded in some studies especially when assessing indirect evidence. For example, it was not clear if health visits for seizures in some studies were directly related to epilepsy, PNES, or acute symptomatic seizures [
]. Second, the absence of clinical investigations in some questionnaire-based studies blurred distinctions further and made it more difficult to identify the real prevalence of epilepsy or seizures in FDP. Ideally, we would have only included studies reporting epilepsy or PNES after clinical investigations, but, likely owing to profound difficulties related to war, persecution, and living in refugee camps, such studies are rare. Data are further conflicted by refugees sometimes choosing to not disclose a diagnosis of epilepsy depending on the potential/ perceived risks or benefits of declaring such a condition in securing asylum [
]. Some studies were performed in camps, others were performed after resettlement, but included individuals were still considered refugees. In one study, participants had been resident in the USA for more than 7 years (36.2%) [
], but as the article reported these people as refugees, we included the findings in this review. It is important to highlight that, no study reported the prevalence of epilepsy in refugees from Venezuela even though, after Syria, the highest number of refugees are Venezuelan.
4.10 Conclusions
Despite an exhaustive search, we found no study specifically exploring epilepsy and its management in forcibly displaced people. Included studies showed that the prevalence of epilepsy was generally higher than in a non-displaced population. Higher prevalence was reported in FDP with neurological or psychiatric comorbidities. These observations were similar among adults and children. One study reported the incidence of epilepsy in refugee children during the war in Croatia, but the survey sample size was small and these data need to be corroborated in larger populations. Central nervous infectious diseases were the main reported cause of seizures in FDP, even though the case report data could not be considered representative.
UNRWA reports showed a prevalence of epilepsy among schoolchildren lower than non-displaced schoolchildren. There was, though, a higher prevalence of epilepsy following war that could not be attributed to an increase in the number of schoolchildren with disabilities. Refugee children with epilepsy are noted to be at risk of leaving school earlier which can limit educational attainment and subsequent life-chances.
Our review highlights the association of epilepsy with high health costs, for example owing to a high percentage of clinical visits related to seizures in refugee camps. More studies are required to better understand the prevalence of epilepsy and PNES in FDP; to determine the underlying etiology of these conditions; to assess the medical needs of, and determine how best to improve quality of life for, FDP with seizure disorders. Improved understanding of the cultural context that displaced persons are leaving is likely to enable better integration with receiving health care systems.
Funding
This work was supported by the National Institute of Health Research (NIHR) Oxford Biomedical Research Centre.
Declaration of Competing Interest
None of the authors has any conflict of interest to disclose.
The health profile and chronic diseases comorbidities of US-bound Iraqi refugees screened by the International Organization for Migration in Jordan: 2007-2009.
Health profile of pediatric Special Immigrant Visa holders arriving from Iraq and Afghanistan to the United States, 2009-2017: a cross-sectional analysis.
Chaaban J., Ghattas H., Habib R., Hanafi S., Sahyoun N., Salti N., et al. Naamani Socio-economic survey of Palestinian refugees in Lebanon. Report published by the American University of Beirut (AUB) and the United Nations Relief and Works Agency for Palestine Refugees in the Near East. (UNRWA) 2010.
Assessment of the knowledge, attitudes, and practices among UNRWA health staff in Jordan concerning mental health programme pre-implementation: a cross-sectional study.
The profile of health problems in African refugees admitted to Sicilian hospitals from Lampedusa, since the beginning of the 2011 humanitarian exodus (1 January to 22 September).
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