The idiopathic intracranial hypertension prospective cohort study: evaluation of prognostic factors and outcomes

Mark Thaller; Victoria Homer; Yousef Hyder; Andreas Yiangou; Anthony Liczkowski; Anthony Fong; Jasvir Virdee; Rachel  Piccus; Marianne Roque; Susan Mollan; Alex Sinclair

doi:10.1007/s00415-022-11402-6

The idiopathic intracranial hypertension prospective cohort study: evaluation of prognostic factors and outcomes

Mark Thaller^*, Victoria Homer, Yousef Hyder, Andreas Yiangou, Anthony Liczkowski, Anthony Fong, Jasvir Virdee, Rachel Piccus, Marianne Roque, Susan Mollan, Alex Sinclair^*

^*Corresponding author for this work

Research output: Contribution to journal › Article › peer-review

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Abstract

Background
There are limited longitudinal data evaluating outcomes in idiopathic intracranial hypertension (IIH). We aimed to evaluate the long-term outcomes in a real-world cohort of patients with IIH and sought to establish the prognostic factors.

Methods
A longitudinal prospective cohort study was conducted over 9 years (2012–2021). Data included demographics and disease status. All consenting patients with IIH were recruited. Visual outcomes included visual acuity, Humphrey visual field and optical coherence tomography (OCT) imaging measurements. Headache frequency, severity, and impact were noted. We analysed the key variables impacting visual and headache outcomes.

Results
The cohort contained 490 patients with a confirmed IIH diagnosis. 98% were female with a mean body mass index (BMI) of 38 kg/m2. Those with the highest OCT retinal nerve fibre layer had the worst visual outcomes. We noted a delayed decline, in the visual field and OCT ganglion cell layer after 12 months. In the medically managed cohort (n = 426), we found that disease duration and change in BMI had the greatest influence on visual outcomes. There was a high burden of headache, with a daily headache at presentation and prior migraine history influencing long-term headache prognosis.

Conclusions
There is a delayed decline in visual outcomes in those with the most severe papilloedema. Disease duration and change in BMI were the key visual prognostic factors, therefore those with the more acute disease may require closer monitoring. Improving prognosis in IIH should focus on the potentially modifiable factor of weight management.

Original language	English
Number of pages	13
Journal	Journal of Neurology
Early online date	15 Oct 2022
DOIs	https://doi.org/10.1007/s00415-022-11402-6
Publication status	E-pub ahead of print - 15 Oct 2022

Bibliographical note

Funding Information:
IIH:Life database is funded by the Healthcare Quality Improvement Partnership (HQIP) and by IIHUK registered patient charity (number 1143522) supported this work. AY is funded by the Association of British Neurologists and Guarantors of the Brain for a 3-year Clinical Research Training Fellowship (2021–2024). AJS has been funded during this study by Medical Research Council grant number MR/KO15184/1, National Institute of Health Research grant NIHR-CS-011-028 (clinician scientist fellowship), Sir Jules Thorne Award for Biomedical Science.

Publisher Copyright:
© 2022, The Author(s).

Keywords

Headache
Idiopathic Intracranial Hypertension
Optical coherence tomography
Outcome
Prognosis
Pseudotumor cerebri
Vision

ASJC Scopus subject areas

Neurology
Clinical Neurology

Access to Document

10.1007/s00415-022-11402-6Licence: Creative Commons: Attribution (CC BY)

ThallerM2022IdiopathicFinal published version, 1.1 MBLicence: Creative Commons: Attribution (CC BY)

Assessing the Therapeutic Efficacy of an 11Beta-Hydroxysteroid Dehydrogenase Type 1 Inhibitor (AZD4017) in Idiopathic Intracranial Hypertension (IIH)
Sinclair, A. (Principal Investigator), Tomlinson, J. (Co-Investigator) & Stewart, P. (Co-Investigator)
Medical Research Council
12/08/13 → 11/08/17
Project: Research Councils
Sustained treatment of Idiopathic Intracranial Hypertension (IIH) through weight loss induced by bariatric surgery
Sinclair, A. (Principal Investigator)
NIHR TRAINEES COORDINATING CENTRE
1/06/13 → 31/10/18
Project: Research

Cite this

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title = "The idiopathic intracranial hypertension prospective cohort study: evaluation of prognostic factors and outcomes",

abstract = "BackgroundThere are limited longitudinal data evaluating outcomes in idiopathic intracranial hypertension (IIH). We aimed to evaluate the long-term outcomes in a real-world cohort of patients with IIH and sought to establish the prognostic factors.MethodsA longitudinal prospective cohort study was conducted over 9 years (2012–2021). Data included demographics and disease status. All consenting patients with IIH were recruited. Visual outcomes included visual acuity, Humphrey visual field and optical coherence tomography (OCT) imaging measurements. Headache frequency, severity, and impact were noted. We analysed the key variables impacting visual and headache outcomes.ResultsThe cohort contained 490 patients with a confirmed IIH diagnosis. 98% were female with a mean body mass index (BMI) of 38 kg/m2. Those with the highest OCT retinal nerve fibre layer had the worst visual outcomes. We noted a delayed decline, in the visual field and OCT ganglion cell layer after 12 months. In the medically managed cohort (n = 426), we found that disease duration and change in BMI had the greatest influence on visual outcomes. There was a high burden of headache, with a daily headache at presentation and prior migraine history influencing long-term headache prognosis.ConclusionsThere is a delayed decline in visual outcomes in those with the most severe papilloedema. Disease duration and change in BMI were the key visual prognostic factors, therefore those with the more acute disease may require closer monitoring. Improving prognosis in IIH should focus on the potentially modifiable factor of weight management.",

keywords = "Headache, Idiopathic Intracranial Hypertension, Optical coherence tomography, Outcome, Prognosis, Pseudotumor cerebri, Vision",

author = "Mark Thaller and Victoria Homer and Yousef Hyder and Andreas Yiangou and Anthony Liczkowski and Anthony Fong and Jasvir Virdee and Rachel Piccus and Marianne Roque and Susan Mollan and Alex Sinclair",

note = "Funding Information: IIH:Life database is funded by the Healthcare Quality Improvement Partnership (HQIP) and by IIHUK registered patient charity (number 1143522) supported this work. AY is funded by the Association of British Neurologists and Guarantors of the Brain for a 3-year Clinical Research Training Fellowship (2021–2024). AJS has been funded during this study by Medical Research Council grant number MR/KO15184/1, National Institute of Health Research grant NIHR-CS-011-028 (clinician scientist fellowship), Sir Jules Thorne Award for Biomedical Science. Publisher Copyright: {\textcopyright} 2022, The Author(s).",

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doi = "10.1007/s00415-022-11402-6",

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T1 - The idiopathic intracranial hypertension prospective cohort study

T2 - evaluation of prognostic factors and outcomes

AU - Thaller, Mark

AU - Homer, Victoria

AU - Hyder, Yousef

AU - Yiangou, Andreas

AU - Liczkowski, Anthony

AU - Fong, Anthony

AU - Virdee, Jasvir

AU - Piccus, Rachel

AU - Roque, Marianne

AU - Mollan, Susan

AU - Sinclair, Alex

N1 - Funding Information: IIH:Life database is funded by the Healthcare Quality Improvement Partnership (HQIP) and by IIHUK registered patient charity (number 1143522) supported this work. AY is funded by the Association of British Neurologists and Guarantors of the Brain for a 3-year Clinical Research Training Fellowship (2021–2024). AJS has been funded during this study by Medical Research Council grant number MR/KO15184/1, National Institute of Health Research grant NIHR-CS-011-028 (clinician scientist fellowship), Sir Jules Thorne Award for Biomedical Science. Publisher Copyright: © 2022, The Author(s).

PY - 2022/10/15

Y1 - 2022/10/15

N2 - BackgroundThere are limited longitudinal data evaluating outcomes in idiopathic intracranial hypertension (IIH). We aimed to evaluate the long-term outcomes in a real-world cohort of patients with IIH and sought to establish the prognostic factors.MethodsA longitudinal prospective cohort study was conducted over 9 years (2012–2021). Data included demographics and disease status. All consenting patients with IIH were recruited. Visual outcomes included visual acuity, Humphrey visual field and optical coherence tomography (OCT) imaging measurements. Headache frequency, severity, and impact were noted. We analysed the key variables impacting visual and headache outcomes.ResultsThe cohort contained 490 patients with a confirmed IIH diagnosis. 98% were female with a mean body mass index (BMI) of 38 kg/m2. Those with the highest OCT retinal nerve fibre layer had the worst visual outcomes. We noted a delayed decline, in the visual field and OCT ganglion cell layer after 12 months. In the medically managed cohort (n = 426), we found that disease duration and change in BMI had the greatest influence on visual outcomes. There was a high burden of headache, with a daily headache at presentation and prior migraine history influencing long-term headache prognosis.ConclusionsThere is a delayed decline in visual outcomes in those with the most severe papilloedema. Disease duration and change in BMI were the key visual prognostic factors, therefore those with the more acute disease may require closer monitoring. Improving prognosis in IIH should focus on the potentially modifiable factor of weight management.

AB - BackgroundThere are limited longitudinal data evaluating outcomes in idiopathic intracranial hypertension (IIH). We aimed to evaluate the long-term outcomes in a real-world cohort of patients with IIH and sought to establish the prognostic factors.MethodsA longitudinal prospective cohort study was conducted over 9 years (2012–2021). Data included demographics and disease status. All consenting patients with IIH were recruited. Visual outcomes included visual acuity, Humphrey visual field and optical coherence tomography (OCT) imaging measurements. Headache frequency, severity, and impact were noted. We analysed the key variables impacting visual and headache outcomes.ResultsThe cohort contained 490 patients with a confirmed IIH diagnosis. 98% were female with a mean body mass index (BMI) of 38 kg/m2. Those with the highest OCT retinal nerve fibre layer had the worst visual outcomes. We noted a delayed decline, in the visual field and OCT ganglion cell layer after 12 months. In the medically managed cohort (n = 426), we found that disease duration and change in BMI had the greatest influence on visual outcomes. There was a high burden of headache, with a daily headache at presentation and prior migraine history influencing long-term headache prognosis.ConclusionsThere is a delayed decline in visual outcomes in those with the most severe papilloedema. Disease duration and change in BMI were the key visual prognostic factors, therefore those with the more acute disease may require closer monitoring. Improving prognosis in IIH should focus on the potentially modifiable factor of weight management.

KW - Headache

KW - Idiopathic Intracranial Hypertension

KW - Optical coherence tomography

KW - Outcome

KW - Prognosis

KW - Pseudotumor cerebri

KW - Vision

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U2 - 10.1007/s00415-022-11402-6

DO - 10.1007/s00415-022-11402-6

M3 - Article

C2 - 36242625

SN - 0340-5354

JO - Journal of Neurology

JF - Journal of Neurology

ER -

The idiopathic intracranial hypertension prospective cohort study: evaluation of prognostic factors and outcomes

Abstract

Bibliographical note

Keywords

ASJC Scopus subject areas

Access to Document

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Projects

Assessing the Therapeutic Efficacy of an 11Beta-Hydroxysteroid Dehydrogenase Type 1 Inhibitor (AZD4017) in Idiopathic Intracranial Hypertension (IIH)

Sustained treatment of Idiopathic Intracranial Hypertension (IIH) through weight loss induced by bariatric surgery

Cite this