Pediatric Neurology Referrals in Armenia: Lessons We Can Learn Peter M. Bingham, Biayna Sukhudyan and Artsruni Hakobyan Pediatrics 2014;134;e639; originally published online August 25, 2014; DOI: 10.1542/peds.2014-0254

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PEDIATRICS is the official journal of the American Academy of Pediatrics. A monthly publication, it has been published continuously since 1948. PEDIATRICS is owned, published, and trademarked by the American Academy of Pediatrics, 141 Northwest Point Boulevard, Elk Grove Village, Illinois, 60007. Copyright © 2014 by the American Academy of Pediatrics. All rights reserved. Print ISSN: 0031-4005. Online ISSN: 1098-4275.

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Pediatric Neurology Referrals in Armenia: Lessons We Can Learn AUTHORS: Peter M. Bingham, MD,a Biayna Sukhudyan, MD,b and Artsruni Hakobyan, MD, PhDc a

Department of Neurology, University of Vermont, Burlington, Vermont; bYerevan State Medical University and “Arabkir” Medical Center; and c“Surb Grigor Lusavorich” Medical Center, Yerevan, Armenia KEY WORDS pediatrics organization and administration, referral and consultation, professional autonomy, education, pediatric neurology, health care systems, referral practice, specialty medicine Dr Bingham conceptualized and designed the interview study that inspired the report and drafted the initial manuscript; Drs Sukhudyan and Hakobyan contributed to planning and design of the interview study that is the basis for the report, coordinated and facilitated data collection, and critically reviewed the manuscript; and all authors approved the final manuscript as submitted. All authors are practicing pediatric neurologists. www.pediatrics.org/cgi/doi/10.1542/peds.2014-0254 doi:10.1542/peds.2014-0254 Accepted for publication Apr 29, 2014 Address correspondence to Peter Bingham, MD, Department of Neurology, 1 South Prospect St, Burlington, VT 05489. E-mail: [email protected] PEDIATRICS (ISSN Numbers: Print, 0031-4005; Online, 1098-4275). Copyright © 2014 by the American Academy of Pediatrics FINANCIAL DISCLOSURE: Dr Bingham serves as a paid consultant to the Health Resources and Services Administration, Division of Vaccine Injury Compensation, reviewing vaccine injury cases; and Drs Sukhudyan and Hakobyan have indicated they have no financial relationships relevant to this article to disclose. FUNDING: Supported in part by a Fulbright Scholar Award (US State Department), which supports international cultural exchange among scholars, to Dr Bingham. Dr Bingham coauthored the Fulbright research proposal with Dr Sukhudyan. POTENTIAL CONFLICT OF INTEREST: The authors have indicated they have no potential conflicts of interest to disclose.

The pace of change in medicine—in the world—means that we cannot afford to live in silos. We need to reach beyond our borders, to teach, and to be taught, by people from other disciplines, with other politics, from other cultures. On that premise, and considering the prevalence of ethnic Armenians among his in-laws, one of us (Dr Bingham) arranged a 5-month sabbatical in Armenia. In addition to conducting collaborative teaching exercises and clinical work, the project, sponsored by the Fulbright Scholar Program of the US State Department, aimed to better understand working relationships between pediatric neurologists and pediatricians in the context of referral. Having survived in the last 100 years a genocide, decades of totalitarianism, a major earthquake, a border war, and a massive exodus of its population (10 million diasporan, 3 million native Armenians), Armenia represents one of the oldest, and perhaps most resilient, cultures on earth. Like several other post-Soviet countries, Armenia is a land-locked, developing country in central Asia. Its health care system, in transition from the former Soviet system, combines a feefor-service system with a governmental insurance program1 for children under age 7 years, or for individuals who have disabilities, or belonging to other socially vulnerable groups. Despite fragmentation, the authority of the central Ministry of Health, and of hospital directors, reflects a health care bureaucracy that persists from the Soviet era.1,2 Pediatric clinicians thus cope with a hierarchical administrative system that has historically been disinclined to foster self-regulation.2 Semi-structured interviews with a convenience sample of Armenian clinicians (20 pediatricians, 6 pediatric neurologists) revealed strikingly similar referral scenarios between the United States and Armenia, and the continuing impact of the Soviet health care system, a “single payer” system that ended 25 years ago. In Armenia, as in the United States,3–5 a set of recurring complaints, often brought to clinical attention by parents perceived as disproportionately worried, prompt many referrals: angry, explosive behaviors; febrile seizure; benign macrocrania; fussy, sleepless infants; tics; mild head trauma; breath-holding spells; and headache. Pediatricians justified these referrals by using pragmatic and ethical rationales founded in beneficence; considering the specialists’ authority and skills, referral could assuage parental fears and help avoid missing important

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diagnoses.4 Although often happy to see healthy children who have simple concerns, pediatric neurologists expressed apprehensions regarding these referrals’ impact on access to their services. Generalists and specialists often reflected on distressing trends—some of them direct legacies of Soviet medicine—bearing on finances, geographic dispersion, education, and professional autonomy.

FINANCES As the Armenian health care system, like the Armenian economy and political system, continues to transition from Soviet communism, salaries for pediatric clinicians remain untenably low ($2000 to $10 000).1,2 Poor compensation for time spent educating families may add motivation to refer. In other respects industrially advanced, the Soviet economy de-emphasized pharmaceutical industrialization; Armenia now depends on imports for over 95% of pharmaceuticals.1 Even as they voice concern over non–evidencebased prescribing practices of some colleagues, pediatricians and subspecialists also note that many families cannot afford medication.

GEOGRAPHIC DISPERSION Soviet specialists were often separated among urban hospitals according to their discipline.1,2 As a result, neonatology consults, for example, require travel by Yerevan’s pediatric neurologists to hospitals housing NICUs. Families’ lengthy travel time from outlying regions highlights the conundrum of how to balance screening and referral by pediatricians with optimal geographic dispersion of specialists.4,5

EDUCATION Soviet-era teaching and traditions that emphasized laboratory testing spawned generations of clinicians who use rae640

diologic studies as screening tools, and also grandparents who expect radiologic testing for their grandchildren. The excessive use of head ultrasound to screen populations constitutes one example of how Soviet-era teaching continues to influence referral patterns, as well as families’ apprehensions and expectations. Children who have benign external hydrocephalus are often inappropriately treated with acetazolamide when head ultrasound reveals findings consistent with that condition. Partly as a result of the Soviet “Semashko” model that emphasized specialty care,2 many general pediatricians lack training in common neurologic or developmental signs or symptoms in infants and children. This educational gap hampers pediatricians’ ability to respond to worried parents who may, in turn, demand specialty referral. As Armenian pediatric neurologists have taken steps to educate their generalist colleagues regarding common, simple concerns, pediatricians increasingly take on responsibility for these cases (eg, febrile seizures).

SELF-REGULATION Specialists and general pediatricians at referral centers in Yerevan frequently accommodate families awaiting unscheduled visits—referred and self-referred—at their office door. The Ministry of Health has in the past mandated that families presenting after day-long drives with referral documentation in hand must be seen on the same day. Clinicians who have been able to negotiate with their Directors (who own and administer the hospitals) have sometimes been able to induce reforms in these scheduling rules.

SOVIET INFLUENCES: POSITIVE LEGACIES Thanks to the strong emphasis on specialty medicine in the Soviet era,

the ratio of pediatric neurologists to population served in Armenia is similar to that in the United States (total ∼25, population near 3 million). Perhaps because only a small percentage of the population actually uses the health care system,1 it is possible to see a pediatric neurologist in Yerevan within a week of referral. Armenian pediatricians differ from US pediatricians4 in voicing satisfaction with the availability of their colleagues in pediatric neurology. The Soviet medical system had strengths in the arenas of rehabilitation medicine, as well as prevention and treatment of infectious disease,2 and the Ministry of Health has extended its rehabilitation network with newer “Centers for Development and Rehabilitation Health” throughout the country. Immunization rates exceed 90% in many villages in outlying regions around Armenia,1 which means prevention of neurologic sequelae of brain infections. The coherence and camaraderie between pediatrician and pediatric neurologist seems relatively strong in responding to cases of meningitis or encephalitis. Just as in the United States,4,5,6 Armenian pediatric hospital centers and pediatricians are in the midst of a transition,1 with increasing pressures on primary care practitioners to assume new responsibilities so as to avoid specialty referral. Armenian pediatric clinicians continue to struggle for consensus regarding which patients should be referred, and with what urgency. And the target is moving; Armenian clinicians, similar to US pediatricians,3 describe increasing complaints related to attention-deficit/ hyperactivity disorder and autism. Although Armenia’s sole medical school, Yerevan State Medical University, currently lacks a Pediatrics Department, clinicians hope for the resuscitation of a vigorous, productive department

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like the one they remember from Soviet times. Despite our disparate cultural, economic, and political history, the concerns and tensions associated with the referral process in Armenia resonate strongly with those of US pediatricians and pediatric neurologists. In both countries, specialists’ evaluation can benefit the families of children who have common, benign conditions by alleviating anxiety, but may interfere with specialists’ capacity to see sicker patients; in both countries, stigma asso-

We in the west can also learn from Armenians’ dedication and resource-

fulness as they provide health care on a shoestring budget. Our meetings showed how similar our educational needs, as well as those of the families and communities for whom we care, can be. Looking ahead, international collaborations among pediatricians and pediatric neurologists will do well to identify educational programs that assist general practitioners and families to distinguish common, benign, symptom complexes from more serious conditions.7

www.aap.org/en-us/about-the-aap/departmentsand-divisions/department-of-education/ Documents/Sec5203FactSheet.pdf. Accessed June 30, 2014 4. Bale JF Jr, Currey M, Firth S, Larson R; Executive Committee of the Child Neurology Society. The Child Neurology Workforce Study: pediatrician access and satisfaction. J Pediatr. 2009;154(4): 602–606, e1 5. Mayer ML. Are we there yet? Distance to care and relative supply among pediatric

medical subspecialties. Pediatrics. 2006;118 (6):2313–2321 6. Ferriero DM, Hauser SL. Supply does not satisfy demand in child neurology. Ann Neurol. 2010;67(5):A5–A6 7. Committee on Nervous System Disorders in Developing Countries, Institute of Medicine, Board on Global Health. Neurological, Psychiatric, and Developmental Disorders: Meeting the Challenge in the Developing World. Washington, DC: National Academies of Science Press; 2001

ciated with neurologic disease undoubtedly colors the referral process7; in both countries, clinicians often lack local organizational structures that could facilitate their quest for greater autonomy, or transition to more efficient distribution of health care systems. Cooperative international efforts will need to carefully examine how and whether US or European guidelines can be adapted to developing post-Soviet countries like Armenia.

REFERENCES 1. Richardson E, Nazaretyan M, Makarova T, Aristakesyan M, Margaryants H, Nolte E. Armenia: health system review. Health Syst Transit. 2013;15(4):1–99 2. Tragakes E, Lessof S. In: Tragakes E, ed. Health Care Systems in Transition: Russian Federation. Copenhagen, Denmark: European Observatory on Health Systems and Policies; 2003:5(3) 3. American Academy of Pediatrics. America’s children need access to pediatric subspecialists [position paper]. Available at:

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Pediatric Neurology Referrals in Armenia: Lessons We Can Learn Peter M. Bingham, Biayna Sukhudyan and Artsruni Hakobyan Pediatrics 2014;134;e639; originally published online August 25, 2014; DOI: 10.1542/peds.2014-0254 Updated Information & Services

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PEDIATRICS is the official journal of the American Academy of Pediatrics. A monthly publication, it has been published continuously since 1948. PEDIATRICS is owned, published, and trademarked by the American Academy of Pediatrics, 141 Northwest Point Boulevard, Elk Grove Village, Illinois, 60007. Copyright © 2014 by the American Academy of Pediatrics. All rights reserved. Print ISSN: 0031-4005. Online ISSN: 1098-4275.

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Pediatric neurology referrals in Armenia: lessons we can learn.

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