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 WHO 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 (67% of reports), non-specific clinical features of typically developing children or those with common developmental disorders (20% of reports) or cranial ultrasound (13% 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 unlicenced 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
921-926
Mustafayev, Revan
9291aec2-c758-4118-8685-3604d428935f
Sevid-Mammadova, Tarana
f4caf909-0d58-4459-a8f9-87bdc807e1f9
Kennedy, Colin
7c3aff62-0a86-4b44-b7d7-4bc01f23ec93
Ozturk Ertem, Ilgi
1dc200d3-fc1a-481e-a8fa-6bb30336d83e
Forsyth, Brian
8be4fb74-3553-4b1b-9b9e-94b32eeaf759
Weber, Martin
11cc70ae-f942-4c8f-af18-4775bd67a0e6
October 2020
Mustafayev, Revan
9291aec2-c758-4118-8685-3604d428935f
Sevid-Mammadova, Tarana
f4caf909-0d58-4459-a8f9-87bdc807e1f9
Kennedy, Colin
7c3aff62-0a86-4b44-b7d7-4bc01f23ec93
Ozturk Ertem, Ilgi
1dc200d3-fc1a-481e-a8fa-6bb30336d83e
Forsyth, Brian
8be4fb74-3553-4b1b-9b9e-94b32eeaf759
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), .
(doi:10.1136/archdischild-2018-315994).
Abstract
Background The WHO 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 (67% of reports), non-specific clinical features of typically developing children or those with common developmental disorders (20% of reports) or cranial ultrasound (13% 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 unlicenced 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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archdischild-2018-315994.full
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Submitted date: 2019
Accepted/In Press date: 15 March 2020
e-pub ahead of print date: 12 June 2020
Published date: October 2020
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© Author(s) (or their employer(s)) 2020. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.
Keywords:
Commonwealth of Independent States, overdiagnosis, overmedicalisation, perinatal encephalopathy, syndrome of intracranial hypertension
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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: 16 Mar 2024 07:42
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Author:
Revan Mustafayev
Author:
Tarana Sevid-Mammadova
Author:
Ilgi Ozturk Ertem
Author:
Brian Forsyth
Author:
Martin Weber
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