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Abstract

Objective:

The study purpose was to examine vision-specific and overall health-related quality of life (QOL) at baseline in Idiopathic Intracranial Hypertension Treatment Trial patients who were newly diagnosed and had mild visual loss. We also sought to determine the associations between vision-specific QOL scores and visual symptoms, visual function, pain, headache-related disability, and obesity.

Methods:

We assessed QOL using the 36-Item Short Form Health Survey, National Eye Institute Visual Function Questionnaire–25 (NEI-VFQ-25), and 10-Item NEI-VFQ-25 Neuro-Ophthalmic Supplement. We compared these results with those of previously reported idiopathic intracranial hypertension (IIH) QOL studies. We assessed relationships between QOL and other clinical characteristics.

Results:

Among 165 participants with IIH (161 women and 4 men with a mean age ± SD of 29.2 ± 7.5 years), vision-specific QOL scores were reduced compared with published values for disease-free controls. Scores of participants were comparable to published results for patients with multiple sclerosis and a history of optic neuritis. A multiple linear regression model for the NEI-VFQ-25 composite score found that perimetric mean deviation in the best eye, visual acuity in the worst eye, visual symptoms, and pain symptoms (headache, neck pain), but not obesity, were independently associated with QOL.

Conclusions:

IIH affects QOL at time of diagnosis even in patients with mild visual impairment. Vision-specific QOL in patients with newly diagnosed IIH may be as decreased as that for patients with other neuro-ophthalmic disorders. IIH treatment should target visual loss and other symptoms of increased intracranial pressure associated with reduced QOL. Reduced QOL does not simply reflect obesity, an underlying IIH risk factor.

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Supplementary Material

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Information & Authors

Information

Published In

Neurology®
Volume 84Number 24June 16, 2015
Pages: 2449-2456
PubMed: 25995055

Publication History

Received: November 30, 2014
Accepted: March 9, 2015
Published online: May 20, 2015
Published in print: June 16, 2015

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Disclosure

The authors report no disclosures relevant to the manuscript. Go to Neurology.org for full disclosures.

Study Funding

NIH 1U10EY017281-01A1 and 1U10EY017387-01A1, ARRA for NORDIC 3U10EY017281-01A1S1 and DCBC 1U10EY017387-01A1S1, Supplements for NORDIC 3U10EY017281-01A1S2. Dr. Bruce was supported by K23EY019341 and by an unrestricted grant from Research to Prevent Blindness, Inc., New York, NY. Dr. Digre was supported in part by an unrestricted grant from Research to Prevent Blindness, Inc., New York, NY, to the Department of Ophthalmology and Visual Sciences, University of Utah, Salt Lake City.

Authors

Affiliations & Disclosures

Kathleen B. Digre, MD
From the Moran Eye Center (K.B.D.), University of Utah, Salt Lake City; Departments of Ophthalmology, Neurology, and Epidemiology (B.B.B.), Emory University, Atlanta, GA; Departments of Biostatistics and Computational Biology and Neurology (M.P.M.), and Center for Human Experimental Therapeutics, University of Rochester Medical Center, NY; Department of Neurology (K.M.G.), University of Pennsylvania School of Medicine, Philadelphia; Departments of Neurology and Ophthalmology (L.J.B.), New York University; and Department of Ophthalmology and Visual Sciences (M.W.), University of Iowa Carver College of Medicine, Iowa City.
Disclosure
Scientific Advisory Boards:
1.
NONE
Gifts:
1.
NONE
Funding for Travel or Speaker Honoraria:
1.
NONE
Editorial Boards:
1.
Journal of Neuro-ophthlamology, Editorial board member;
Patents:
1.
NONE
Publishing Royalties:
1.
NONE
Employment, Commercial Entity:
1.
NONE
Consultancies:
1.
NONE
Speakers' Bureaus:
1.
NONE
Other Activities:
1.
NONE
Clinical Procedures or Imaging Studies:
1.
NONE
Research Support, Commercial Entities:
1.
NONE
Research Support, Government Entities:
1.
NEI: Idiopathic Intracranial Hypertension Treatment Trial--Site PI (until 2014 but I received no personal payments) This study was supported byNIH 1U10EY017281-01A1 and 1U10EY017387-01A1 ARRA for NORDIC 3U10EY017281-01A1S1 and DCBC 1U10EY017387- 01A1S1 Supplements for NORDIC 3U10EY017281-01A1S2
Research Support, Academic Entities:
1.
NONE
Research Support, Foundations and Societies:
1.
NONE
Stock/stock Options/board of Directors Compensation:
1.
NONE
License Fee Payments, Technology or Inventions:
1.
NONE
Royalty Payments, Technology or Inventions:
1.
Royalty Payments, ?Methods, systems, and apparatus for reducing the frequency and/or severity of photophobic responses or for modulating circadian cycles.?. less than $100 in 2013; This payment is being donated to the department of ophthalmology University of Utah.
Stock/stock Options, Research Sponsor:
1.
NONE
Stock/stock Options, Medical Equipment & Materials:
1.
NONE
Legal Proceedings:
1.
NONE
Beau B. Bruce, MD, PhD
From the Moran Eye Center (K.B.D.), University of Utah, Salt Lake City; Departments of Ophthalmology, Neurology, and Epidemiology (B.B.B.), Emory University, Atlanta, GA; Departments of Biostatistics and Computational Biology and Neurology (M.P.M.), and Center for Human Experimental Therapeutics, University of Rochester Medical Center, NY; Department of Neurology (K.M.G.), University of Pennsylvania School of Medicine, Philadelphia; Departments of Neurology and Ophthalmology (L.J.B.), New York University; and Department of Ophthalmology and Visual Sciences (M.W.), University of Iowa Carver College of Medicine, Iowa City.
Disclosure
Scientific Advisory Boards:
1.
MedImmune
Gifts:
1.
NONE
Funding for Travel or Speaker Honoraria:
1.
NONE
Editorial Boards:
1.
Neuro-Ophthalmology Virtual Education Library, Editorial Board, 2014-present
Patents:
1.
NONE
Publishing Royalties:
1.
NONE
Employment, Commercial Entity:
1.
NONE
Consultancies:
1.
NONE
Speakers' Bureaus:
1.
NONE
Other Activities:
1.
NONE
Clinical Procedures or Imaging Studies:
1.
NONE
Research Support, Commercial Entities:
1.
Novartis
Research Support, Government Entities:
1.
NIH/PHS Grant K23-EY019341 2009-present NIH/PHS Grant R01-NS089694 2014-present
Research Support, Academic Entities:
1.
NONE
Research Support, Foundations and Societies:
1.
Research to Prevent Blindness
Stock/stock Options/board of Directors Compensation:
1.
NONE
License Fee Payments, Technology or Inventions:
1.
NONE
Royalty Payments, Technology or Inventions:
1.
NONE
Stock/stock Options, Research Sponsor:
1.
NONE
Stock/stock Options, Medical Equipment & Materials:
1.
NONE
Legal Proceedings:
1.
Bayer, medicolegal consulting, 2014-present United States Government, medicolegal consulting, 2014-2015
Michael P. McDermott, PhD
From the Moran Eye Center (K.B.D.), University of Utah, Salt Lake City; Departments of Ophthalmology, Neurology, and Epidemiology (B.B.B.), Emory University, Atlanta, GA; Departments of Biostatistics and Computational Biology and Neurology (M.P.M.), and Center for Human Experimental Therapeutics, University of Rochester Medical Center, NY; Department of Neurology (K.M.G.), University of Pennsylvania School of Medicine, Philadelphia; Departments of Neurology and Ophthalmology (L.J.B.), New York University; and Department of Ophthalmology and Visual Sciences (M.W.), University of Iowa Carver College of Medicine, Iowa City.
Disclosure
Scientific Advisory Boards:
1.
The ALS Association/FDA (DSMB for clinical trial in ALS); Novartis Pharmaceuticals Corporation (DSMB for clinical trials in spinal and bulbar muscular atrophy and severe burn patients); AstraZeneca (DSMB for clinical trial in Alzheimer's disease), aTyr Pharma (DSMB for clinical trial in facioscapulohumeral muscular dystrophy), and Muscular Dystrophy Association (DSMB for clinical trial in ALS).
Gifts:
1.
NONE
Funding for Travel or Speaker Honoraria:
1.
NONE
Editorial Boards:
1.
Movement Disorders, Editorial Board, 2010-2015; Chance, Editor, 2014-2015.
Patents:
1.
NONE
Publishing Royalties:
1.
NONE
Employment, Commercial Entity:
1.
NONE
Consultancies:
1.
Received consulting fees from the New York State Department of Health (2010-2014), Asubio Pharmaceuticals, Inc. (2012-2013), Cerebral Assessment Systems, Inc. (2014-2015), and AstraZeneca (2014- 2015).
Speakers' Bureaus:
1.
NONE
Other Activities:
1.
NONE
Clinical Procedures or Imaging Studies:
1.
NONE
Research Support, Commercial Entities:
1.
Received grant support from Rhythm Pharmaceuticals, Inc.
Research Support, Government Entities:
1.
Received grant support from: NIH, NS48843, Co-I, 2003- present; NIH, NS52619, PI, 2005-present; NIH, NS61795, PI, 2010-present; NIH, AT04526, Co-I, 2007-present; NIH, EY17387, Co-I, 2009-present; NIH, NS60118, Co-I, 2009- 2013; NIH, NS65712, Co-I, 2009-present; NIH, HD57977, Co- I, 2009-2013; NIH, GM96850, Co-I, 2010-2013; NIH, DE21047, Co-I, 2012-2013; NIH, AR65119, Co-I, 2013- present; NIH, NS80840, Co-I, 2014-present; FDA, FD03710, Co-I, 2009-2013; FDA, FD03716, Co-I, 2011-present; FDA, FD04187, Co-I, 2011-2013; NYSTEM, C028502, Co-I, 2013- present.
Research Support, Academic Entities:
1.
NONE
Research Support, Foundations and Societies:
1.
Received grant support from Spinal Muscular Atrophy Foundation.
Stock/stock Options/board of Directors Compensation:
1.
NONE
License Fee Payments, Technology or Inventions:
1.
NONE
Royalty Payments, Technology or Inventions:
1.
NONE
Stock/stock Options, Research Sponsor:
1.
NONE
Stock/stock Options, Medical Equipment & Materials:
1.
NONE
Legal Proceedings:
1.
NONE
Kristin M. Galetta, MS
From the Moran Eye Center (K.B.D.), University of Utah, Salt Lake City; Departments of Ophthalmology, Neurology, and Epidemiology (B.B.B.), Emory University, Atlanta, GA; Departments of Biostatistics and Computational Biology and Neurology (M.P.M.), and Center for Human Experimental Therapeutics, University of Rochester Medical Center, NY; Department of Neurology (K.M.G.), University of Pennsylvania School of Medicine, Philadelphia; Departments of Neurology and Ophthalmology (L.J.B.), New York University; and Department of Ophthalmology and Visual Sciences (M.W.), University of Iowa Carver College of Medicine, Iowa City.
Disclosure
Scientific Advisory Boards:
1.
NONE
Gifts:
1.
NONE
Funding for Travel or Speaker Honoraria:
1.
NONE
Editorial Boards:
1.
NONE
Patents:
1.
NONE
Publishing Royalties:
1.
NONE
Employment, Commercial Entity:
1.
NONE
Consultancies:
1.
NONE
Speakers' Bureaus:
1.
NONE
Other Activities:
1.
NONE
Clinical Procedures or Imaging Studies:
1.
NONE
Research Support, Commercial Entities:
1.
NONE
Research Support, Government Entities:
1.
NONE
Research Support, Academic Entities:
1.
NONE
Research Support, Foundations and Societies:
1.
NONE
Stock/stock Options/board of Directors Compensation:
1.
NONE
License Fee Payments, Technology or Inventions:
1.
NONE
Royalty Payments, Technology or Inventions:
1.
NONE
Stock/stock Options, Research Sponsor:
1.
NONE
Stock/stock Options, Medical Equipment & Materials:
1.
NONE
Legal Proceedings:
1.
NONE
Laura J. Balcer, MD, MSCE
From the Moran Eye Center (K.B.D.), University of Utah, Salt Lake City; Departments of Ophthalmology, Neurology, and Epidemiology (B.B.B.), Emory University, Atlanta, GA; Departments of Biostatistics and Computational Biology and Neurology (M.P.M.), and Center for Human Experimental Therapeutics, University of Rochester Medical Center, NY; Department of Neurology (K.M.G.), University of Pennsylvania School of Medicine, Philadelphia; Departments of Neurology and Ophthalmology (L.J.B.), New York University; and Department of Ophthalmology and Visual Sciences (M.W.), University of Iowa Carver College of Medicine, Iowa City.
Disclosure
Scientific Advisory Boards:
1.
Biogen Idec, Vaccinex, Genzyme
Gifts:
1.
NONE
Funding for Travel or Speaker Honoraria:
1.
(1) Biogen Idec, consulting; (2) Genzyme, consulting; (3) Vaccinex, consulting
Editorial Boards:
1.
NONE
Patents:
1.
NONE
Publishing Royalties:
1.
NONE
Employment, Commercial Entity:
1.
NONE
Consultancies:
1.
Biogen Idec, Novartis, Vaccinex, Questcor, Acorda
Speakers' Bureaus:
1.
NONE
Other Activities:
1.
NONE
Clinical Procedures or Imaging Studies:
1.
NONE
Research Support, Commercial Entities:
1.
NONE
Research Support, Government Entities:
1.
NONE
Research Support, Academic Entities:
1.
NONE
Research Support, Foundations and Societies:
1.
NONE
Stock/stock Options/board of Directors Compensation:
1.
NONE
License Fee Payments, Technology or Inventions:
1.
NONE
Royalty Payments, Technology or Inventions:
1.
NONE
Stock/stock Options, Research Sponsor:
1.
NONE
Stock/stock Options, Medical Equipment & Materials:
1.
NONE
Legal Proceedings:
1.
NONE
Michael Wall, MD
From the Moran Eye Center (K.B.D.), University of Utah, Salt Lake City; Departments of Ophthalmology, Neurology, and Epidemiology (B.B.B.), Emory University, Atlanta, GA; Departments of Biostatistics and Computational Biology and Neurology (M.P.M.), and Center for Human Experimental Therapeutics, University of Rochester Medical Center, NY; Department of Neurology (K.M.G.), University of Pennsylvania School of Medicine, Philadelphia; Departments of Neurology and Ophthalmology (L.J.B.), New York University; and Department of Ophthalmology and Visual Sciences (M.W.), University of Iowa Carver College of Medicine, Iowa City.
Disclosure
Scientific Advisory Boards:
1.
NONE
Gifts:
1.
NONE
Funding for Travel or Speaker Honoraria:
1.
NONE
Editorial Boards:
1.
NONE
Patents:
1.
NONE
Publishing Royalties:
1.
NONE
Employment, Commercial Entity:
1.
NONE
Consultancies:
1.
Carl Zeiss Meditec
Speakers' Bureaus:
1.
NONE
Other Activities:
1.
NONE
Clinical Procedures or Imaging Studies:
1.
NONE
Research Support, Commercial Entities:
1.
NONE
Research Support, Government Entities:
1.
VA Merit Review NIH U10 Grant IIH Treatment Trial
Research Support, Academic Entities:
1.
NONE
Research Support, Foundations and Societies:
1.
NONE
Stock/stock Options/board of Directors Compensation:
1.
NONE
License Fee Payments, Technology or Inventions:
1.
NONE
Royalty Payments, Technology or Inventions:
1.
NONE
Stock/stock Options, Research Sponsor:
1.
NONE
Stock/stock Options, Medical Equipment & Materials:
1.
NONE
Legal Proceedings:
1.
NONE
On behalf of the NORDIC Idiopathic Intracranial Hypertension Study Group

Notes

Correspondence to Dr. Digre: [email protected]
Go to Neurology.org for full disclosures. Funding information and disclosures deemed relevant by the authors, if any, are provided at the end of the article.
NORDIC Idiopathic Intracranial Hypertension Study Group coinvestigators are listed on the Neurology® Web site at Neurology.org.

Author Contributions

Kathleen B. Digre: drafting/revising the manuscript, analysis or interpretation of data, accepts responsibility for conduct of research and will give final approval, statistical analysis, study supervision. Beau B. Bruce: drafting/revising the manuscript, study concept or design, analysis or interpretation of data, accepts responsibility for conduct of research and will give final approval, statistical analysis. Michael P. McDermott: drafting/revising the manuscript, analysis or interpretation of data, accepts responsibility for conduct of research and will give final approval, statistical analysis. Kristin M. Galetta: drafting/revising the manuscript, accepts responsibility for conduct of research and will give final approval. Laura J. Balcer: drafting/revising the manuscript, analysis or interpretation of data, accepts responsibility for conduct of research and will give final approval, statistical analysis, obtaining funding. Michael Wall: drafting/revising the manuscript, study concept or design, accepts responsibility for conduct of research and will give final approval, study supervision, obtaining funding.

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