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Paediatric Idiopathic Intracranial Hypertension in Wales: A Retrospective Observational Study

Russell Azad Khan Orcid Logo, Huw Strafford, Beata Fonferko-Shadrach, Kathryn Bush Orcid Logo, Robert Powell, Catharine White, Arron Lacey Orcid Logo, Owen Pickrell Orcid Logo

Journal of Child Neurology

Swansea University Authors: Russell Azad Khan Orcid Logo, Huw Strafford, Beata Fonferko-Shadrach, Robert Powell, Catharine White, Arron Lacey Orcid Logo, Owen Pickrell Orcid Logo

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DOI (Published version): 10.1177/08830738261436139

Abstract

This study measures the incidence and prevalence of idiopathic intracranial hypertension (IIH) in children in Wales and assesses risk factors and health care utilisation. We identified 177 children (1-15 years) with IIH diagnosed between 2003 and 2017. Incidence increased from 1.6/100 000 per year (...

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Published in: Journal of Child Neurology
ISSN: 0883-0738 1708-8283
Published: SAGE Publications 2026
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URI: https://cronfa.swan.ac.uk/Record/cronfa71613
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We identified 177 children (1-15 years) with IIH diagnosed between 2003 and 2017. Incidence increased from 1.6/100 000 per year (2003) to 3.5/100 000 per year (2017). Sixty-three percent of the cases were girls, and 87% were diagnosed between 7 and 15 years. Children in the most deprived quintile were more likely to develop IIH compared to children in the least deprived quintile (odds ratio [OR]&#x2009;=&#x2009;1.7 [95%CI&#x2009;=&#x2009;1.1-2.9]). Obese and overweight children were more likely to develop IIH compared with non-overweight children (ORs&#x2009;=&#x2009;21 [95%CI&#x2009;=&#x2009;9-51] and 5.1 [95%CI&#x2009;=&#x2009;1.9-14]). Children with IIH had higher hospital admission rates than children without IIH (rate ratio&#x2009;=&#x2009;3.9; 95% CI 3.6-4.3). 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The BRAIN Unit and the Welsh Gene Park are funded by the Welsh Government through Health and Care Research Wales. This work was also supported by Health Data Research UK, which receives its funding from HDR UK Ltd. (HDR-9006) funded by the UK Medical Research Council, Engineering and Physical Sciences Research Council, Economic and Social Research Council, Department of Health and Social Care (England), Chief Scientist Office of the Scottish Government Health and Social Care Directorates, Health and Social Care Research and Development Division (Welsh Government), Public Health Agency (Northern Ireland), British Heart Foundation (BHF), and the Wellcome Trust.</funders><projectreference/><lastEdited>2026-04-28T10:39:58.8429624</lastEdited><Created>2026-03-11T13:37:12.3126755</Created><path><level id="1">Faculty of Medicine, Health and Life Sciences</level><level id="2">Swansea University Medical School - Health Data Science</level></path><authors><author><firstname>Russell</firstname><surname>Azad Khan</surname><orcid>0000-0003-4196-8774</orcid><order>1</order></author><author><firstname>Huw</firstname><surname>Strafford</surname><orcid/><order>2</order></author><author><firstname>Beata</firstname><surname>Fonferko-Shadrach</surname><orcid/><order>3</order></author><author><firstname>Kathryn</firstname><surname>Bush</surname><orcid>0000-0002-4422-4749</orcid><order>4</order></author><author><firstname>Robert</firstname><surname>Powell</surname><order>5</order></author><author><firstname>Catharine</firstname><surname>White</surname><order>6</order></author><author><firstname>Arron</firstname><surname>Lacey</surname><orcid>0000-0001-7983-8073</orcid><order>7</order></author><author><firstname>Owen</firstname><surname>Pickrell</surname><orcid>0000-0003-4396-5657</orcid><order>8</order></author></authors><documents><document><filename>71613__36605__78168a3915804336889b317afdf5d1ea.pdf</filename><originalFilename>71613.VOR.pdf</originalFilename><uploaded>2026-04-27T11:54:29.9312702</uploaded><type>Output</type><contentLength>1468447</contentLength><contentType>application/pdf</contentType><version>Version of Record</version><cronfaStatus>true</cronfaStatus><documentNotes>&#xA9; The Author(s) 2026. 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spelling 2026-04-28T10:39:58.8429624 v2 71613 2026-03-11 Paediatric Idiopathic Intracranial Hypertension in Wales: A Retrospective Observational Study c958bdfede770d54cd2fb064b9946901 0000-0003-4196-8774 Russell Azad Khan Russell Azad Khan true false a6389fc6d4d18e7b67033ee04b381e43 Huw Strafford Huw Strafford true false 7d3f1e80939f2b8fab6a16b5ec6ac845 Beata Fonferko-Shadrach Beata Fonferko-Shadrach true false 7c8ac48bb6ae4281930e4138f94a51b6 Robert Powell Robert Powell true false 0ac0cc2392c2380a84770fb677ee204e Catharine White Catharine White true false b69d245574e754d2637cc9e76379fe11 0000-0001-7983-8073 Arron Lacey Arron Lacey true false 1c3044b5ff7a6552ff5e8c9e3901c807 0000-0003-4396-5657 Owen Pickrell Owen Pickrell true false 2026-03-11 MEDS This study measures the incidence and prevalence of idiopathic intracranial hypertension (IIH) in children in Wales and assesses risk factors and health care utilisation. We identified 177 children (1-15 years) with IIH diagnosed between 2003 and 2017. Incidence increased from 1.6/100 000 per year (2003) to 3.5/100 000 per year (2017). Sixty-three percent of the cases were girls, and 87% were diagnosed between 7 and 15 years. Children in the most deprived quintile were more likely to develop IIH compared to children in the least deprived quintile (odds ratio [OR] = 1.7 [95%CI = 1.1-2.9]). Obese and overweight children were more likely to develop IIH compared with non-overweight children (ORs = 21 [95%CI = 9-51] and 5.1 [95%CI = 1.9-14]). Children with IIH had higher hospital admission rates than children without IIH (rate ratio = 3.9; 95% CI 3.6-4.3). The increasing incidence, association with BMI and deprivation, and increased health care utilisation in children with IIH are relevant findings to health care professionals and policy makers. Journal Article Journal of Child Neurology 0 SAGE Publications 0883-0738 1708-8283 children, epidemiology, idiopathic intracranial hypertension, obesity, socio-economic deprivation 17 4 2026 2026-04-17 10.1177/08830738261436139 COLLEGE NANME Medical School COLLEGE CODE MEDS Swansea University SU Library paid the OA fee (TA Institutional Deal) This work was supported by staff funded as part of the Brain Repair and Intracranial Neurotherapeutics (BRAIN) Unit Infrastructure Award (grant UA05) and the Wales Gene Park. The BRAIN Unit and the Welsh Gene Park are funded by the Welsh Government through Health and Care Research Wales. This work was also supported by Health Data Research UK, which receives its funding from HDR UK Ltd. (HDR-9006) funded by the UK Medical Research Council, Engineering and Physical Sciences Research Council, Economic and Social Research Council, Department of Health and Social Care (England), Chief Scientist Office of the Scottish Government Health and Social Care Directorates, Health and Social Care Research and Development Division (Welsh Government), Public Health Agency (Northern Ireland), British Heart Foundation (BHF), and the Wellcome Trust. 2026-04-28T10:39:58.8429624 2026-03-11T13:37:12.3126755 Faculty of Medicine, Health and Life Sciences Swansea University Medical School - Health Data Science Russell Azad Khan 0000-0003-4196-8774 1 Huw Strafford 2 Beata Fonferko-Shadrach 3 Kathryn Bush 0000-0002-4422-4749 4 Robert Powell 5 Catharine White 6 Arron Lacey 0000-0001-7983-8073 7 Owen Pickrell 0000-0003-4396-5657 8 71613__36605__78168a3915804336889b317afdf5d1ea.pdf 71613.VOR.pdf 2026-04-27T11:54:29.9312702 Output 1468447 application/pdf Version of Record true © The Author(s) 2026. This article is distributed under the terms of the Creative Commons Attribution 4.0 License. true eng https://creativecommons.org/licenses/by/4.0/
title Paediatric Idiopathic Intracranial Hypertension in Wales: A Retrospective Observational Study
spellingShingle Paediatric Idiopathic Intracranial Hypertension in Wales: A Retrospective Observational Study
Russell Azad Khan
Huw Strafford
Beata Fonferko-Shadrach
Robert Powell
Catharine White
Arron Lacey
Owen Pickrell
title_short Paediatric Idiopathic Intracranial Hypertension in Wales: A Retrospective Observational Study
title_full Paediatric Idiopathic Intracranial Hypertension in Wales: A Retrospective Observational Study
title_fullStr Paediatric Idiopathic Intracranial Hypertension in Wales: A Retrospective Observational Study
title_full_unstemmed Paediatric Idiopathic Intracranial Hypertension in Wales: A Retrospective Observational Study
title_sort Paediatric Idiopathic Intracranial Hypertension in Wales: A Retrospective Observational Study
author_id_str_mv c958bdfede770d54cd2fb064b9946901
a6389fc6d4d18e7b67033ee04b381e43
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7c8ac48bb6ae4281930e4138f94a51b6
0ac0cc2392c2380a84770fb677ee204e
b69d245574e754d2637cc9e76379fe11
1c3044b5ff7a6552ff5e8c9e3901c807
author_id_fullname_str_mv c958bdfede770d54cd2fb064b9946901_***_Russell Azad Khan
a6389fc6d4d18e7b67033ee04b381e43_***_Huw Strafford
7d3f1e80939f2b8fab6a16b5ec6ac845_***_Beata Fonferko-Shadrach
7c8ac48bb6ae4281930e4138f94a51b6_***_Robert Powell
0ac0cc2392c2380a84770fb677ee204e_***_Catharine White
b69d245574e754d2637cc9e76379fe11_***_Arron Lacey
1c3044b5ff7a6552ff5e8c9e3901c807_***_Owen Pickrell
author Russell Azad Khan
Huw Strafford
Beata Fonferko-Shadrach
Robert Powell
Catharine White
Arron Lacey
Owen Pickrell
author2 Russell Azad Khan
Huw Strafford
Beata Fonferko-Shadrach
Kathryn Bush
Robert Powell
Catharine White
Arron Lacey
Owen Pickrell
format Journal article
container_title Journal of Child Neurology
container_volume 0
publishDate 2026
institution Swansea University
issn 0883-0738
1708-8283
doi_str_mv 10.1177/08830738261436139
publisher SAGE Publications
college_str Faculty of Medicine, Health and Life Sciences
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hierarchy_top_id facultyofmedicinehealthandlifesciences
hierarchy_top_title Faculty of Medicine, Health and Life Sciences
hierarchy_parent_id facultyofmedicinehealthandlifesciences
hierarchy_parent_title Faculty of Medicine, Health and Life Sciences
department_str Swansea University Medical School - Health Data Science{{{_:::_}}}Faculty of Medicine, Health and Life Sciences{{{_:::_}}}Swansea University Medical School - Health Data Science
document_store_str 1
active_str 0
description This study measures the incidence and prevalence of idiopathic intracranial hypertension (IIH) in children in Wales and assesses risk factors and health care utilisation. We identified 177 children (1-15 years) with IIH diagnosed between 2003 and 2017. Incidence increased from 1.6/100 000 per year (2003) to 3.5/100 000 per year (2017). Sixty-three percent of the cases were girls, and 87% were diagnosed between 7 and 15 years. Children in the most deprived quintile were more likely to develop IIH compared to children in the least deprived quintile (odds ratio [OR] = 1.7 [95%CI = 1.1-2.9]). Obese and overweight children were more likely to develop IIH compared with non-overweight children (ORs = 21 [95%CI = 9-51] and 5.1 [95%CI = 1.9-14]). Children with IIH had higher hospital admission rates than children without IIH (rate ratio = 3.9; 95% CI 3.6-4.3). The increasing incidence, association with BMI and deprivation, and increased health care utilisation in children with IIH are relevant findings to health care professionals and policy makers.
published_date 2026-04-17T07:04:06Z
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