Table 1

Summary of publications related to perinatal encephalopathy, the syndrome of intracranial hypertension and other diagnostic labels relating to the same clinical phenomena in the Commonwealth of Independent States and Eastern European countries

Study author and year	Sample		Methodology	Terminology used in the medical records or publication	% (95% CI)* of study sample diagnosed as PE-SIH	N affected in study population	Diagnosed neurological conditions on independent re-evaluation
Clinical populations
Khaletskaia et al (2009)22	Infants attending outpatient clinics in Nizhnij Novgorod, Russian Federation.		Outpatient medical record review.	Perinatal encephalopathy.	82% of 800 infants at 1 month of age. 93% of 800 infants at 3 months of age.	N/A	N/A
Tsybelova (2007)23	Infants born 2003–2005 in a hospital setting in the Russian Federation.		Retrospective medical record review.	Perinatal encephalopathy.	80.1	80% of 909	N/A
Tatochenko et al (2006)32	Infants attending outpatient clinics in Moscow, Russian Federation.		Outpatient medical record review.	Perinatal encephalopathy.	87.6 (82.8 to 92.3)	162/185	149 out of 162 (92.0%) diagnosed had no neurological pathology, 13 (8.0%) were diagnosed with disorders including cerebral palsy, developmental delay, kernicterus, hydrocephalus, microcephaly and vegetative-visceral syndrome.
Davydov et al (2006)28	Infants born 2002–2004 who had health supervision visits at a single primary healthcare centre in Kemerovo, Russian Federation.		Not specified.	Perinatal encephalopathy.	98.5 (98.2 to 98.8)	3684/3739	N/A
Fedorov and Salomova (2009)31	Infants attending district outpatient clinics in Moscow, Russian Federation.		Outpatient medical record review.	Perinatal encephalopathy.			N/A
	Born 1995	Zelenograd			67.4 (57.9 to 76.8)	188/237
		South West			84.5 (77.8 to 91.3)	93/110
	Born 1999 or 2000	Zelenograd			89.4 (83.1 to 95.6)	84/94
		South West			79.3 (74.2 to 84.5)	64/95
		Butovo			32.5 (29.1 to 36.0)	234/719
Special populations
Miller et al (2007)14	Children in Murmansk orphanages, Russian Federation.		Medical record review.	Perinatal encephalopathy.	46% of infants and 31% of older children in a sample of 193 children.	N/A	N/A
Miller (2005)21	Children being considered for international adoption from the CIS countries and Eastern Europe.		Medical record review conducted by International Adoption Clinic in the USA.	Perinatal encephalopathy.	69.2 (59.5 to 77.7)	74/107	Except for developmental delay, hypotonia and microcephaly, no other condition has been identified.
				Intracranial hypertension syndrome.	7.5 (2.5 to 12.6)	8/107
				Hydrocephalic-hypertension syndrome.	7.5 (2.5 to 12.6)	8/107
				Hydrocephalus syndrome.	4.7 (1.5 to 10.6)	5/107
				Hyperneuroreflectory activity, hyperexcitability, hyperirritability, neuroreflector syndrome, syndrome of heightened neuroreflexical agitation.†	20.6 (12.9 to 28.2)	22/107
				Vegetative visceral syndrome.	1.9 (0.2 to 6.6)	2/107
Yulish et al (2010)27	Comparative study of three groups of children under 5 years of age from Donetsk, Ukraine, method of sampling is not reported. Group 1: from orphanages. Group 2: children with frequent upper respiratory tract infections. Group 3: children considered healthy.		Retrospective medical record review.	Perinatal encephalopathy.	Group 1: 100.0. Group 2: 42.7 (35.9 to 58.9). Group 3: 14.3 (2.7 to 25.9).	Group 1: 89/89. Group 2: 32/75. Group 3: 5/35.	N/A
Jenista (2000)29	Children being considered for international adoption. 2472 (88% of 2814 records) were from Eastern Europe and Russian Federation.		Medical record review conducted by International Adoption Clinic in the USA).	Perinatal encephalopathy.	60	N/A	Neurological diagnosis confirmed in 6% patients. Developmental and behavioural problems, as well as several other serious medical conditions diagnosed in 30%.
				Hydrocephalic syndrome.	33	N/A
				Perinatal affectation of the central nervous system.	32	N/A
				Spastic tetraparesis or paraparesis.	29	N/A
				Hypertension syndrome.	22	N/A
				Natal trauma to the spine.	18	N/A
				Pyramidal insufficiency.	11	N/A
Albers et al (1997)30	Children being considered for international adoption from the CIS countries and Eastern Europe.		Medical record review conducted by International Adoption Clinic in the USA.	Perinatal encephalopathy.	53.2 (38.9 to 67.5)	25/47	No severe neurological condition diagnosed. Brachial plexus injury, chronic hepatitis B, fetal alcohol syndrome, hipospadias, mild spastic diplegia syndrome, nephrolithiasis, optic nerve atrophy, orthopaedic problems, polydactyly, strabismus and unilateral hearing loss have been identified.
				Hyperexcitability.	8.5 (2.4 to 20.4)	4/47
				Hydrocephalocele syndrome.	6.4 (1.3 to 17.5)	3/47
				Hypertensive syndrome.	4.3 (0.5 to 14.5)	2/47

*95% CI has been calculated using reported figures where available.
†Although these diagnostic labels have been listed separately, they all refer to the same clinical phenomena.5
CIS, Commonwealth of Independent States; N/A, not available; PE, perinatal encephalopathy; PE-SIH, perinatal encephalopathy and syndrome of intracranial hypertension; USA, United States of America.