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Perinatal encephalopathy, the syndrome of intracranial hypertension and associated diagnostic labels in the Commonwealth of Independent States: a systematic review

Perinatal encephalopathy, the syndrome of intracranial hypertension and associated diagnostic labels in the Commonwealth of Independent States: a systematic review
Perinatal encephalopathy, the syndrome of intracranial hypertension and associated diagnostic labels in the Commonwealth of Independent States: a systematic review
Background. The World Health Organization reports excessive rates of ill-defined neurological diagnoses and ineffective and potentially harmful drug treatments in children in the Commonwealth of Independent States (CIS). Collectively termed perinatal encephalopathy and the syndrome of intracranial hypertension (PE-SIH), these diagnoses are important contributors to perceived childhood morbidity and disability in the CIS. A systematic compilation of information on PE-SIH is lacking.

Methods.We systematically reviewed publications between 1970 and 2020 on PE-SIH in Azerbaijani, English, Russian and Ukrainian languages and summarised information on PE-SIH.

Results.We identified 30 publications (70% in Russian) published 1976-2017. The diagnosis of PE-SIH was either based on unreported criteria (65% of reports), nonspecific clinical features of typically developing children or those with common developmental disorders (20% of reports) or cranial ultrasound (15% of reports). The reported proportion of children with PE-SIH in the study samples ranged from 31% to 99%. There were few published studies on reassessments of children diagnosed with PE-SIH and these did not confirm neurological disease in the majority of children. Treatments included multiple unlicensed drugs without established effectiveness and with potential unwanted effects.

Conclusion.This review suggests that PE-SIH is a medical diagnostic label that is used in numerous children without substantive associated disease. The diagnosis and treatment of PE-SIH is a multidimensional, iatrogenic, clinical and public health problem in the CIS. With increasing use of evidence-based medicine guidelines in the region it is hoped that PE-SIH will gradually disappear but actions to accelerate this change are nevertheless needed.
Commonwealth of Independent States, overdiagnosis, overmedicalisation, perinatal encephalopathy, syndrome of intracranial hypertension
0003-9888
1-6
Mustafayev, Revan
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Sevid-Mammadova, Tarana
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Kennedy, Colin
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Ozturk Ertem, Ilgi
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Forsyth, Brian
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Weber, Martin
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Mustafayev, Revan
9291aec2-c758-4118-8685-3604d428935f
Sevid-Mammadova, Tarana
f4caf909-0d58-4459-a8f9-87bdc807e1f9
Kennedy, Colin
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Ozturk Ertem, Ilgi
1dc200d3-fc1a-481e-a8fa-6bb30336d83e
Forsyth, Brian
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Weber, Martin
11cc70ae-f942-4c8f-af18-4775bd67a0e6

Mustafayev, Revan, Sevid-Mammadova, Tarana, Kennedy, Colin, Ozturk Ertem, Ilgi, Forsyth, Brian and Weber, Martin (2020) Perinatal encephalopathy, the syndrome of intracranial hypertension and associated diagnostic labels in the Commonwealth of Independent States: a systematic review. Archives of Disease in Childhood, 105 (10), 1-6. (doi:10.1136/archdischild-2018-315994).

Record type: Review

Abstract

Background. The World Health Organization reports excessive rates of ill-defined neurological diagnoses and ineffective and potentially harmful drug treatments in children in the Commonwealth of Independent States (CIS). Collectively termed perinatal encephalopathy and the syndrome of intracranial hypertension (PE-SIH), these diagnoses are important contributors to perceived childhood morbidity and disability in the CIS. A systematic compilation of information on PE-SIH is lacking.

Methods.We systematically reviewed publications between 1970 and 2020 on PE-SIH in Azerbaijani, English, Russian and Ukrainian languages and summarised information on PE-SIH.

Results.We identified 30 publications (70% in Russian) published 1976-2017. The diagnosis of PE-SIH was either based on unreported criteria (65% of reports), nonspecific clinical features of typically developing children or those with common developmental disorders (20% of reports) or cranial ultrasound (15% of reports). The reported proportion of children with PE-SIH in the study samples ranged from 31% to 99%. There were few published studies on reassessments of children diagnosed with PE-SIH and these did not confirm neurological disease in the majority of children. Treatments included multiple unlicensed drugs without established effectiveness and with potential unwanted effects.

Conclusion.This review suggests that PE-SIH is a medical diagnostic label that is used in numerous children without substantive associated disease. The diagnosis and treatment of PE-SIH is a multidimensional, iatrogenic, clinical and public health problem in the CIS. With increasing use of evidence-based medicine guidelines in the region it is hoped that PE-SIH will gradually disappear but actions to accelerate this change are nevertheless needed.

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More information

Submitted date: 2019
Accepted/In Press date: 15 March 2020
e-pub ahead of print date: 12 June 2020
Additional Information: Article open access. Copyright will be retained by the WHO. Re-use permitted under CC BY-NC. No commercial re-use.
Keywords: Commonwealth of Independent States, overdiagnosis, overmedicalisation, perinatal encephalopathy, syndrome of intracranial hypertension

Identifiers

Local EPrints ID: 429334
URI: http://eprints.soton.ac.uk/id/eprint/429334
ISSN: 0003-9888
PURE UUID: d9ce13b8-535a-4076-b87d-539b8f024a7d

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Date deposited: 26 Mar 2019 17:30
Last modified: 26 Nov 2021 06:11

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Contributors

Author: Revan Mustafayev
Author: Tarana Sevid-Mammadova
Author: Colin Kennedy
Author: Ilgi Ozturk Ertem
Author: Brian Forsyth
Author: Martin Weber

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