Medical conditions among Iraqi refugees in Jordan: data from the United Nations Refugee Assistance Information System
Farrah J Mateen a, Marco Carone b, Huda Al-Saedy c, Sayre Nyce d, Jad Ghosn d, Timothy Mutuerandu c & Robert E Black e
a. Department of Neurology, Room 627 Pathology Building, Johns Hopkins Hospital, The Johns Hopkins University, 600 North Wolfe Street, Baltimore, MD 21287, United States of America (USA).
b. Division of Biostatistics, University of California, Berkeley, USA.
c. United Nations High Commissioner for Refugees, Amman, Jordan. .
d. United Nations High Commissioner for Refugees, Beirut, Lebanon.
e. Department of International Health, Johns Hopkins Bloomberg School of Public Health, Baltimore, USA.
Correspondence to Farrah J Mateen (e-mail: firstname.lastname@example.org).
(Submitted: 04 October 2011 – Revised version received: 30 January 2012 – Accepted: 31 January 2012 – Published online: 11 April 2012.)
Bulletin of the World Health Organization 2012;90:444-451. doi: 10.2471/BLT.11.097048
The war in Iraq began on 20 March 2003 and officially ended in 2011. The Iraqi refugee crisis that ensued has led to the displacement of more than 4.2 million people.1 More than 2 million Iraqi refugees are resettled abroad.2 Many Iraqi civilians seek humanitarian assistance in the countries to which they flee and require health services in the countries in which they resettle. In the surrounding regions of Iraq, the United Nations High Commissioner for Refugees (UNHCR) often assumes primary responsibility for ensuring access to health care for refugees and asylum seekers (people whose refugee status has yet to be determined by the UNHCR). This includes surveillance of disease and provision of appropriate medical treatments.
The value of monitoring and understanding the health needs of refugees in the place where they first seek asylum has prompted the development of a new refugee health and humanitarian assistance monitoring system by the UNHCR. Assessment of the output of this system, designed to report all medical diagnoses and rates of health care utilization, may be a source of important lessons for future refugees in similar settings, especially urbanized refugees from non-tropical, middle-income countries. Health data for a large group of refugees can provide important baseline information on a vulnerable population for which no baseline data exist in their country of origin and resolve any controversy with respect to their health status. Prior to the Iraqi war, Iraqi physicians had already reported high rates of chronic disease,3,4 but few data are available on the epidemiology of disease in the Iraqi population.5–7 High quality information on Iraqi refugee health care could direct health and humanitarian services, focus expenditures, enhance awareness, highlight unmet population-based needs, reveal stigma and, ideally, improve the health status of the Iraqi refugee population.
Given the potentially high burden of medical conditions in refugee populations from Iraq and the need to find a long-term response to their health needs, our objective is to describe the medical diagnoses and health service utilization patterns seen in a large group of Iraqi refugees in Jordan.
The total population of Jordan is approximately 6.3 million people.8 Jordan is second only to the Syrian Arab Republic as a country of first asylum for Iraqi refugees.2 In 2010, 36 944 Iraqis in Jordan registered with the UNHCR. Among them were 31 467 active registrants, 3444 people who resettled elsewhere during the year, 107 who voluntarily repatriated, 507 who independently departed and 1419 whose cases were closed because of death.9
The Refugee Assistance Information System (RAIS), an online system owned and operated by the UNHCR, collects demographic and health services data on all health conditions for which registered refugees and asylum seekers request care. The RAIS was piloted in Jordan beginning on 1 January 2010, and all data collected up to 31 December 2010 were included in this analysis. The RAIS actively receives health information on registered Iraqi asylum seekers and refugees in Jordan from more than 30 partnering organizations at 100 centres, including nongovernmental organizations (NGOs), primary health-care clinics, hospitals, pharmacies and government-sponsored medical centres.10 Major organizations providing care in 2010 included Caritas Jordan, the Jordan Health Aid Society and Mercy Corps.
Diagnoses were entered into the RAIS using the World Health Organization’s International classification of diseases, 10th revision (ICD-10) handbook11 and rendered or confirmed by local health-care providers in health centres and hospitals in Jordan. Health data were actively entered throughout 2010 by trained project workers and dedicated data entry specialists employed by UNHCR partner organizations in Jordan. Each refugee health visit was entered in the RAIS by patient name, date of birth, date of visit, sex, ICD-10 diagnosis, type of care (acute versus chronic), type of evaluation (inpatient or outpatient), use of a medical procedure and referral to a medical specialty. For this study, RAIS data were linked to existing record systems at UNHCR, which included data on nationality, governorate of origin in Iraq as well as vulnerability and resettlement application status; None of the data in the UNHCR records system were available to care providers.
Vulnerability status was reported by the UNHCR, based on in-person interviews, as either (i) a serious medical condition, defined as one “requiring assistance, in terms of treatment or provision of nutritional and non-food items, in the country of asylum”; (ii) disability, defined as “physical, mental, intellectual or sensory impairments from birth, or resulting from illness, infection, injury, trauma or old age” that “may hinder full and effective participation in society on an equal basis with others”; specific legal and physical protection needs “because of a threat to life, freedom or physical safety”; torture, or “any act by which severe pain or suffering, whether physical or mental, is intentionally inflicted on a person . . . when such pain or suffering is inflicted by or at the instigation of or with the consent or acquiescence of a public official or other person acting in an official capacity”; woman at risk “because of her gender, such as single mothers or caregivers, single women, widows, older women, women with disabilities, or survivors of violence”; older person at risk, defined as a “person 60 years old or above with specific need(s) in addition to age” on account of being another’s sole caregiver, or of having health problems, difficulty adjusting to the new environment, and/or lack of psychological, physical, economic, social or other support from family members or others); family unity, “when action is taken to separate an existing family unit, or when family members who already have been separated are not able or permitted to reunite”; unaccompanied or separated child, “currently not under the care of either parent or other legal or customary primary caregiver”; single parent, or “both the primary income earner and/or caregiver”; or child at risk “due to age, dependency, and/or immaturity.”
Only UNHCR officials have access to identifiable data and protected health information, which is securely archived. Patients can request their own health data through individual providers. The authors did not check individual patients’ records or communicate with medical providers in this study.
Data accuracy was ensured through: (i) drop-down menus and calendars for accurate entry; (ii) linkage with the UNHCR database (proGres) for registration and verification of demographic data, including personal interviews and official documents; (iii) comparison with stand-alone health records kept by partner organizations; (iv) routine checks and report generation to identify data anomalies; and (v) regular communication with partner organizations.
Basic descriptive statistics were used to characterize outcomes of interest in the study population. Disease burden in subpopulations was assessed by appropriately cross-tabulating outcomes and indicators of subgroup membership.
The Johns Hopkins University Institutional Review Board approved the de-identified data analysis of the UNHCR programmatic data.
In 2010, 27 166 visits were made and health services were provided to 7642 registered Iraqi refugees, who represented 20.7% (7642/36 944) of all UNHCR-registered Iraqi refugees in Jordan. The mean number of visits per refugee was 3.6. Fig. 1 shows the population pyramid representing refugees receiving UNHCR health assistance, 78% of whom were at least 18 years old. The average duration of refugee status since registration was 2.6 years. The place of origin in Iraq of refugees seeking health assistance was most often Baghdad (69.5%), Basrah (6.6%) and Ninewa (3.2%). Less than 3.0% of the total population came from other regions.
Fig. 1. Population pyramid representing refugees receiving health care with the assistance of the United Nations High Commissioner for Refugees in Jordan, 2010
Burden of disease
A total of 904 separate diagnoses were recorded in the RAIS. The most common ones and their frequencies are broken down by age in Table 1 and by sex, for acute and chronic conditions, in Table 2. The diagnoses per refugee were one in 41%; two in 21%; three in 13%; four in 9%; five in 5%; six in 4%, and seven or more in 8%. Cancer care was required by 2% of refugees.
Table 1. Most common acute and chronic conditions among Iraqi refugees in Jordan, by age group, 2010
Table 2. Most common acute and chronic conditions among Iraqi refugees in Jordan, by sex, 2010
More than 1500 refugees had cardiovascular problems; respiratory diseases; diseases of the musculoskeletal system and connective tissues, and endocrine, nutritional and metabolic disorders. Among adults 18 years or older, 22% (1668) had hypertension; 11% (804) had type II diabetes mellitus; 4% (299) had type I diabetes mellitus; 10% (737) had visual disturbances; 10% (715) had disorders of lipoprotein metabolism and other lipidemias; 9% (697) had other joint disorders and 7% (517) had chronic ischaemic heart disease.
Health services utilization
Most visits were to outpatient services (65.9%). The diagnoses requiring the greatest number of visits per refugee were cerebrovascular disease (average of 1.46 visits per refugee); senile cataract (1.46); glaucoma (1.44); urolithiasis (1.38); prostatic hyperplasia(1.36); angina pectoris (1.35); pain in throat and chest (1.34); inguinal hernia (1.34); cervical disc disorder (1.33), and recurrent depressive disorder (1.30). For all refugees as a group, the largest number of visits were for essential hypertension (2067 visits); visual disturbances (1129); type II diabetes mellitus (1021); other joint disorders (969), and acute upper respiratory infections (952).
The most common services, including consultations, for the health care of refugees were consultation or referral to a specialty (n = 31 747), medication provision (n = 18 432), laboratory studies (n = 2307), X-rays (n = 1090), dental care (n = 926), emergency care (n = 654), eyeglasses (n = 597), and ultrasound (n = 495). The most common specialty medical visits were to ophthalmology (n = 1116 visits), dentistry (n = 805), gynaecology (n 655), orthopaedic surgery (n = 525), internal medicine (n = 495), paediatrics (n = 401), ear, nose and throat (n = 392), general surgery (n = 359) and dermatology (n = 323).
Vulnerability status included a serious medical condition (24.2%), disability (5.6%), need for specific legal and physical protection (5.3%), torture victim (3.4%), woman at risk (3.2%), older person at risk (3.2%), family unity (0.4%), unaccompanied or separated child or child at risk (0.3%) and single parent (0.2%). Most refugees received cash assistance (70.4%). Resettlement claims were submitted by 43.4%, and 7.5% of refugees receiving health assistance departed for resettlement in 2010. Essential hypertension, visual disturbances, type II diabetes mellitus, and “other” joint disorders were uniformly common among the subpopulations with a specific vulnerability status.
A high burden of chronic, non-communicable diseases exists in the Iraqi refugee population receiving health-care assistance in Jordan. Most refugees seeking UNHCR-funded health assistance, which is nearly 4 out of every 5 individuals, require chronic disease management. The most prevalent chronic disease diagnoses are found with nearly equal frequency in both sexes. This disease profile requires a revamped and long-term approach to health care provision in humanitarian settings. Less than 7% of individuals had an infectious or parasitic illness, even though these have been the focus for screening and prevention among refugees from other locations.12–14
The Iraqi refugee situation in Jordan provides several important lessons. First, targeted programmes, specifically for the management of hypertension, diabetes, joint disorders and eye care, are needed and can be implemented at the community level to reduce the high volume of physician-based management. Trained staff, including non-medical staff, should be engaged to manage common treatable diseases. For example, eye problems, including visual disturbances requiring corrective eyewear, were common among Iraqi refugees in Jordan, along with the more specific diagnoses made by physicians, such as cataracts and glaucoma.
Second, mental health care provision requires more than merely having specialized physicians available. Community outreach, advertising of available care, preventive public health measures and general awareness are also required. RAIS recorded a low prevalence of psychiatric disorders even in populations in which higher than average rates of mental disturbances are expected. Among the tortured, disabled and elderly, psychiatric disorders were not recorded as frequent, perhaps because refugees may be turning elsewhere for mental health care or, more likely, because psychiatric disorders are underdiagnosed and under-ascertained in refugees. The putative reasons for this include the stigma surrounding mental disorders, cultural barriers, lack of screening by health-care providers and low health-care-seeking behaviour in the area of mental health.
Third, the types of specialists refugees need to consult differ in middle-income countries and have not been well documented. The need for ophthalmologists, dentists, gynaecologists and orthopaedic surgeons was paramount. Specialists in these areas should be actively engaged in providing care during future refugee crises of a similar nature.
Fourth, some diagnoses in RAIS are probably “indicator illnesses” pointing to refugees’ need for access to health services. Such illnesses include type I diabetes, chronic ischaemic heart disease and epilepsy among the chronic diseases, and, among acute conditions, abdominal pain or pelvic pain and fracture. Future work could seek to monitor specific diagnoses and determine whether they represent a stable fraction of the overall health needs of the refugee population. Minimum standards for the diagnosis and treatment of common, life-threatening noncommunicable diseases are needed.
Finally, an organized data system for the monitoring of health care utilization is possible and desirable in an urbanized refugee situation. Active monitoring of health information for vulnerable refugee populations may soon be possible, allowing for programmatic responses to refugees’ changing health needs by season, population size and political circumstances. The documented care and services provided to Iraqi civilians in Jordan will be useful as a starting point for aiding other populations whose security situation is unclear, including people seeking asylum during the recent Arab Spring.
Our data are consistent with reported health information on Iraqi refugees. The global trend towards a high burden of chronic disease is also seen in the Iraqi refugee population. This trend is expected to reach pandemic proportions in the coming years.15–17 According to an independent national survey of 1200 Iraqi households in Jordan, 36% of Iraqi refugees have a chronic disorder; 20% have hypertension, 19% have musculoskeletal conditions and 9% have diabetes mellitus.18 In a study of resettled Iraqi refugees in California by the Centers for Disease Control and Prevention, the prevalence of obesity (body mass index ≥ 30 kg/m2) among refugees (25%) approximated the prevalence seen in the United States population. Hypertension occurred in 15% of Iraqi refugees overall and in 64% of refugees 65 years of age or older.19 Tobacco use, obesity, physical inactivity and non-adherence to medication could also be high in Iraqi refugees but were simply not captured by the RAIS.
Our study is not intended to be an economic analysis. Nonetheless, it provides insight into the smouldering financial crisis related to chronic disease management in refugees. More than 5000 Iraqi refugees received UNHCR cash assistance among the 7642 refugees in this study, a sign that they are dependent on humanitarian aid for daily living. Chronic disease increases refugees’ daily expenses and can generate new costs related to things such as assistance in performing the activities of daily living, gait aids or transportation assistance. The care of chronic diseases is financially unsustainable for NGOs and supranational organizations in the longer term. In Jordan, an estimated 63 million United States dollars (US$) were spent on refugee health care, predominantly for Iraqis, in 2010.9 Tertiary health care costs US$ 6000 to 20 000 per refugee, and a budget deficit led to the suspension of UNHCR medical aid to 600 Iraqi refugee families in 2009.20 Urgent and responsive refugee health care for infectious disease outbreaks has been considered within the context of a human rights approach to health. Aid for the management of chronic diseases and subclinical health problems and for the control of preventable chronic illnesses requires a similar discussion.
This study benefited from a large country-wide sample that received data actively over the course of one year. The RAIS is expanding its scope to asylum seekers and refugees of many different backgrounds in the Middle East and northern Africa and it generates useful, new information on the use of health services by refugees. These data do not come from self-reports or surveys, but rather, they represent actual procedures, medical visits and diagnoses made by physicians. Although more than 3.5 million Iraqi refugees are recognized by the UNHCR2 there are very few published reports on the health status of Iraqi refugees and asylum seekers. Those that have been published include a small number of refugees and have usually been about refugees in countries of resettlement. In contrast, full demographic information is reported to the UNHCR, which allows for subgroup analyses. Although some diagnoses are written as “unspecified” or “other,” an ICD-10 code is given for each clinical presentation, as is commonly found in high-income country data sets.
This study has several limitations. The RAIS provides data from refugees who seek humanitarian assistance and health care but reports on only 21% of Iraqi refugees in Jordan. Refugees able to purchase private inpatient and outpatient care are not normally reported to the RAIS. Refugees in the RAIS may be systematically poorer than refugees who do not seek UNHCR assistance, and healthy refugees may not access the UNHCR at all. On the other hand, some Iraqis may have been too ill or too poor to leave Iraq (personal communication, G Burnham, Johns Hopkins University). Thus, health care needs among refugee Iraqis are probably higher than reported here. Furthermore, this study should not be considered a burden of disease analysis since many diseases, such as dyslipidemias and diabetes, may have gone underdetected. No comparable data exist from earlier stages of the refugee crisis or for the Iraqi population that remained in Iraq. The majority of Iraqi refugees in Jordan are assumed to have arrived in the region since 2003, but the UNHCR has been present in Iraq since the 1980s. A small number of Iraqi refugees may have lived in Jordan even before the 2003 war.21 We had no systematic way to observe or quantify data entry errors, since individual-level data came from more than 100 centres and our analysis was retrospective.
More than nine years after the Iraq war, large numbers of Iraqis continue to seek resettlement worldwide.22 Iraqi refugees would find themselves in a more difficult situation were it not for the Jordanian health system and its refugee support.18 These preliminary data provide a strong impetus to strengthen the primary-health-care system in Jordan and to provide these refugees with access to basic diagnostic tests and treatments.
FJM is supported by the 2010–2012 Practice Research Fellowship Grant of the American Academy of Neurology Foundation and a 2011 Travel Grant from the Johns Hopkins University Center for Global Health. She is also affiliated with the Department of International Health of the Johns Hopkins Bloomberg School of Public Health in Baltimore, United States of America.
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