Global Neurology: Farrah Mateen, MD: On the Unseen Burden of Neurological Disease in Refugees
As of 2010, there are approximately 43.7 million forcibly displaced persons worldwide — including refugees, internally displaced persons, and asylum-seekers, according to the United Nations High Commission for Refugees (UNHCR). And the number has likely grown since the Arab Spring. But, to date, neurological status in these individuals has been overlooked. Neurologist Farrah J. Mateen, MD, has made it her mission to address this issue by documenting the neurological health and related quality of life in refugees.
“There's actually very little literature on what happens with refugees with neurological disorders, both those who came with neurological disorders from their home countries and also those who may have acquired neurological disorders during armed conflict or disaster,” said Dr. Mateen, a fellow of the neurology department at Johns Hopkins University and a PhD student at the Johns Hopkins Bloomberg School of Public Health. The literature that does exist originates from places of resettlement like the US, Canada, and Scandinavia — where refugees have come after seeking asylum in a second, possibly even third country before finally resettling. “What actually happens to refugees when they cross the border is really undocumented,” she said.
One year ago, Dr. Mateen completed a month-long project in Beirut working at a non-governmental organization as a consultant for all medical disorders in refugees. She knew right away that she wanted to come back.
Dr. Mateen applied and received a grant for the study of neurological disorders and quality of life in refugees in Syria. Because of the increasingly precarious state of affairs, it soon became clear that she would not be able to proceed with her project as planned. While in Lebanon, Dr. Mateen had met and collaborated with representatives from the UNHCR who were working on a data entry system to compile and interpret information on the health and health service needs of refugees, called RAIS: the Refugee Assistance Information System. She relocated her study to Jordan.
By telephone, Dr. Mateen spoke with Neurology Today from the UNHCR office in Amman, Jordan.
REFUGEES IN JORDAN
Dr. Mateen plans to compare the status of refugees who have UNHCR-provided health assistance (who tend to be poorer) with the refugees who come to the private clinic in Amman. She is partnering with local neurologists, Jordanian medical students, and the UNHCR in this effort.
“Partly, this study will involve looking at neurological disorders with standardized questionnaires, but we're also trying to understand lapses in treatment and how refugee status may have affected their ability to receive care,” Dr. Mateen said. The conflict in this particular region is not new, she said. People have been living in these circumstances for a long time, the implications of which, Dr. Mateen said, should also be studied.
For refugees, Jordan stands at a crossroads, where people come in from many different regions of the Middle East. “We get to study and try to understand whether where people are coming from is affecting how they're doing, and also if what we're doing to help them is affecting how they're doing,” Dr. Mateen told Neurology Today.
The Jordanian health care system is thought to be amongst the best in the Middle East, she noted, and it has opened its arms to refugees along with the UNHCR and private donations. Refugees are able to get diagnoses, treatments, and access to neurologists, which is not true in many other parts of the world. There are about 50 neurologists for a population of around 6.3 million. This means that we may “have a fairly clear understanding of some of the disorders,” Dr. Mateen said.
In the past, most of the research on refugees has centered on very poor countries with a high prevalence of infectious disease — so data, for example, on meningitis and polio were documented, whereas data on stroke and epilepsy were not.
People who make the overarching health care decisions are not necessarily physicians, she said. “When you see the huge burden of neurological, psychiatric and mental health concerns among the refugees, then it starts to be very clear how much needs to be done. But if you don't have those baseline numbers, it becomes difficult.”
This is the place where neurologists can come in and make a difference, Dr. Mateen told Neurology Today.
HEALTH CARE ACCESS IN JORDAN
“Access to neurological care is available only in the three biggest cities — Amman, Irbid, and Zarka,” Mohammed Shehab, MD, neurologist and president of the Jordan Neurological Society based in Amman, told Neurology Today. People have to travel from other regions to these cities — usually about 30 miles or more.
Some individuals, Dr. Mateen observed, come to Jordan and become refugees because of their medical status. “They know that they are sick and they come thinking this is a way to access neurological care,” she said.
On a daily basis, Dr. Shehab said that the most common neurological disorders he sees — in descending frequency — are headache, peripheral neuropathy, back pain, epilepsy, and brain attacks (strokes). The incidence of neurological disorders is greater among refugees than in the general Jordanian population, he said, and there are certainly some neurological disorders, which are more common in refugees that are further complicated by poverty and decreased awareness — but we see the same issues in the smaller Jordanian villages.
I think the UNHCR will continue to see new refugees register as savings start to run out, she said. Additionally, given the changing situation in the Middle East, there will be more asylum-seekers coming from Syria, Dr. Mateen said.
In the long term, Dr. Mateen hopes that her work will impact more than just Jordan. Ideally, we'd want to develop a “refugee-screening instrument,” she said, and that may involve working with community health workers since access to neurologists could be limited. We need to look for inexpensive solutions that are efficient and helpful in multiple settings, she said.
For example, a next step could be to develop an emergency kit, which includes core medications that would be sent to varied settings where displaced persons exist — aspirin for stroke, a collar for traumatic neck injury, vaccines or other agreed-upon key items, she said. The kit would also be useful in natural disasters.
We're hoping that this effort could be organized through the AAN or the World Federation of Neurology or through some other collaboration, Dr. Mateen said.
For more information on Dr. Mateen's international work, see http://bit.ly/ozYMXn.
From Amman, Jordan, Dr. Farrah Mateen talks about the challenges of assessing the neurological status of refugees in the Middle East and other parts of the world. Listen here: http://bit.ly/ypejA4