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What are the research priorities for idiopathic intracranial hypertension? A priority setting partnership between patients and healthcare professionals
OBJECTIVE: Idiopathic intracranial hypertension (IIH) is under-researched and the aim was to determine the top 10 research priorities for this disease. DESIGN: A modified nominal group technique was used to engage participants who had experience of IIH. SETTING: This James Lind Alliance Priority Set...
Autores principales: | , , , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
BMJ Publishing Group
2019
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6429891/ https://www.ncbi.nlm.nih.gov/pubmed/30878991 http://dx.doi.org/10.1136/bmjopen-2018-026573 |
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author | Mollan, Susan Hemmings, Krystal Herd, Clare P Denton, Amanda Williamson, Shelley Sinclair, Alexandra J |
author_facet | Mollan, Susan Hemmings, Krystal Herd, Clare P Denton, Amanda Williamson, Shelley Sinclair, Alexandra J |
author_sort | Mollan, Susan |
collection | PubMed |
description | OBJECTIVE: Idiopathic intracranial hypertension (IIH) is under-researched and the aim was to determine the top 10 research priorities for this disease. DESIGN: A modified nominal group technique was used to engage participants who had experience of IIH. SETTING: This James Lind Alliance Priority Setting Partnership was commissioned by IIH UK, a charity. PARTICIPANTS: People with IIH, carers, family and friends, and healthcare professionals participated in two rounds of surveys to identify unique research questions unanswered by current evidence. The most popular 26 uncertainties were presented to stakeholders who then agreed the top 10 topics. RESULTS: The top 10 research priorities for IIH included aetiology of IIH, the pathological mechanisms of headache in IIH, new treatments in IIH, the difference between acute and gradual visual loss, the best ways to monitor visual function, biomarkers of the disease, hormonal causes of IIH, drug therapies for the treatment of headache, weight loss and its role in IIH and finally, the best intervention to treat IIH and when should surgery be performed. CONCLUSIONS: This priority setting encouraged people with direct experience of IIH to collectively identify critical gaps in the existing evidence. The overarching research aspiration was to understand the aetiology and management of IIH. |
format | Online Article Text |
id | pubmed-6429891 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2019 |
publisher | BMJ Publishing Group |
record_format | MEDLINE/PubMed |
spelling | pubmed-64298912019-04-05 What are the research priorities for idiopathic intracranial hypertension? A priority setting partnership between patients and healthcare professionals Mollan, Susan Hemmings, Krystal Herd, Clare P Denton, Amanda Williamson, Shelley Sinclair, Alexandra J BMJ Open Neurology OBJECTIVE: Idiopathic intracranial hypertension (IIH) is under-researched and the aim was to determine the top 10 research priorities for this disease. DESIGN: A modified nominal group technique was used to engage participants who had experience of IIH. SETTING: This James Lind Alliance Priority Setting Partnership was commissioned by IIH UK, a charity. PARTICIPANTS: People with IIH, carers, family and friends, and healthcare professionals participated in two rounds of surveys to identify unique research questions unanswered by current evidence. The most popular 26 uncertainties were presented to stakeholders who then agreed the top 10 topics. RESULTS: The top 10 research priorities for IIH included aetiology of IIH, the pathological mechanisms of headache in IIH, new treatments in IIH, the difference between acute and gradual visual loss, the best ways to monitor visual function, biomarkers of the disease, hormonal causes of IIH, drug therapies for the treatment of headache, weight loss and its role in IIH and finally, the best intervention to treat IIH and when should surgery be performed. CONCLUSIONS: This priority setting encouraged people with direct experience of IIH to collectively identify critical gaps in the existing evidence. The overarching research aspiration was to understand the aetiology and management of IIH. BMJ Publishing Group 2019-03-15 /pmc/articles/PMC6429891/ /pubmed/30878991 http://dx.doi.org/10.1136/bmjopen-2018-026573 Text en © Author(s) (or their employer(s)) 2019. Re-use permitted under CC BY. Published by BMJ. This is an open access article distributed in accordance with the Creative Commons Attribution 4.0 Unported (CC BY 4.0) license, which permits others to copy, redistribute, remix, transform and build upon this work for any purpose, provided the original work is properly cited, a link to the licence is given, and indication of whether changes were made. See: https://creativecommons.org/licenses/by/4.0/. |
spellingShingle | Neurology Mollan, Susan Hemmings, Krystal Herd, Clare P Denton, Amanda Williamson, Shelley Sinclair, Alexandra J What are the research priorities for idiopathic intracranial hypertension? A priority setting partnership between patients and healthcare professionals |
title | What are the research priorities for idiopathic intracranial hypertension? A priority setting partnership between patients and healthcare professionals |
title_full | What are the research priorities for idiopathic intracranial hypertension? A priority setting partnership between patients and healthcare professionals |
title_fullStr | What are the research priorities for idiopathic intracranial hypertension? A priority setting partnership between patients and healthcare professionals |
title_full_unstemmed | What are the research priorities for idiopathic intracranial hypertension? A priority setting partnership between patients and healthcare professionals |
title_short | What are the research priorities for idiopathic intracranial hypertension? A priority setting partnership between patients and healthcare professionals |
title_sort | what are the research priorities for idiopathic intracranial hypertension? a priority setting partnership between patients and healthcare professionals |
topic | Neurology |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6429891/ https://www.ncbi.nlm.nih.gov/pubmed/30878991 http://dx.doi.org/10.1136/bmjopen-2018-026573 |
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