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Articles
December 30, 2015
Letter to the Editor

Overdiagnosis of idiopathic intracranial hypertension

January 26, 2016 issue
86 (4) 341-350

Abstract

Objective:

To delineate the factors contributing to overdiagnosis of idiopathic intracranial hypertension (IIH) among patients seen in one neuro-ophthalmology service at a tertiary center.

Methods:

We retrospectively reviewed new patients referred with a working diagnosis of IIH over 8 months. The Diagnosis Error Evaluation and Research taxonomy tool was applied to cases referred with a diagnosis of IIH and a discrepant final diagnosis.

Results:

Of 1,249 patients, 165 (13.2%) were referred either with a preexisting diagnosis of IIH or to rule out IIH. Of the 86/165 patients (52.1%) with a preexisting diagnosis of IIH, 34/86 (39.5%) did not have IIH. The most common diagnostic error was inaccurate ophthalmoscopic examination in headache patients. Of 34 patients misdiagnosed as having IIH, 27 (27/34 [79.4%]; 27/86 [31.4%]) had at least one lumbar puncture, 29 (29/34 [85.3%]; 29/86 [33.7%]) had a brain MRI, and 8 (8/34 [23.5%]; 8/86 [9.3%]) had a magnetic resonance/CT venogram. Twenty-six had received medical treatment, 1 had a lumbar drain, and 4 were referred for surgery. In 8 patients (8/34 [23.5%]; 8/86 [9.3%]), an alternative diagnosis requiring further evaluation was identified.

Conclusions:

Diagnostic errors resulted in overdiagnosis of IIH in 39.5% of patients referred for presumed IIH, and prompted unnecessary tests, invasive procedures, and missed diagnoses. The most common errors were inaccurate ophthalmoscopic examination in headache patients and thinking biases, reinforcing the need for rapid access to specialists with experience in diagnosing optic nerve disorders. Indeed, the high prevalence of primary benign headaches and obesity in young women often leads to costly and invasive evaluations for presumed IIH.

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Letters to the Editor
26 August 2016
Overdiagnosis of IIH: Author response to Mathew et al.
Valerie Biousse

Mathew et al. misinterpreted some of our statements. [1] Lack of neuro-ophthalmologists should not delay appropriate care for patients with suspected raised intracranial pressure (ICP). Comprehensive ophthalmologists are perfectly able to make a diagnosis of, or definitely rule out, papilledema. Further, neurologists should have the skills to diagnose and rule out papilledema. Overdiagnosis of IIH is not from the lack of neuro-ophthalmologists, but rather from the lack of ocular funduscopy or from biased thinking linked to pre-established diagnosis in obese women.

Severe papilledema is necessary for visual loss in raised ICP. Patients with no or mild papilledema are not at risk of visual loss. A quick funduscopic examination at initial encounter should be enough to rule out papilledema. When the fundus appears normal or the optic nerves only mildly elevated, it is better to delay a potentially iatrogenic lumbar puncture (LP) and specific treatment for presumed raised ICP until the patient has received appropriate clinical evaluation. Indeed, in the absence of papilledema, the ICP is most likely normal, exposing the patient to low CSF pressure headaches after an unnecessary LP. Additionally, these patients are typically obese, leading to difficult procedures with often multiple attempts and severe pain.

When there is papilledema, immediate consultation with an ophthalmologist, or neuro-ophthalmologist if available, is necessary. IIH cannot be compared to temporal arteritis in which visual loss is rapid. Except for rare fulminant forms of IIH (which have easily visualized severe papilledema), appropriate evaluation and a definite diagnosis are necessary prior to initiating treatment.

1. Fisayo A, Bruce BB, Newman NJ, Biousse V. Overdiagnosis of idiopathic intracranial hypertension. Neurology 2016;86:341-350.

For disclosures, please contact the editorial office at [email protected].

3 May 2016
Caution with the high misdiagnosis rate in IIH
Michael O. Kinney, Neurology Resident
G. McDonnell, J. Best.

We read with interest the article by Fisayo et al. [1] and considered its implications for Northern Ireland which has a remarkably high prevalence of idiopathic intracranial hypertension (IIH). [2]

However, in our experience, it is rare to "un-diagnose" IIH. The article by Fisayo et al. must be viewed within the confines of a retrospective design. How confident are the authors that treatment had not minimized eye signs by time of first review at the neuro-ophthalmology clinic? What was the average time delay to being seen after initiation of therapy?

The other issue is that of referral bias. It seems 23% didn't have lumbar puncture, [1] which is essential to diagnose IIH. How many of these patients turned out to have a mimic disorder? Was the fact that 24% of group II did not receive medical therapy because the clinical suspicion was very low?

We agree the processes of care are important to examine. In our setting, the diagnosis can be raised by various groups, but ultimately the patient should be diagnosed by a neurologist (working in conjunction with an ophthalmology specialist) who pays attention to accurate clinical history, examination, and appropriate investigations (to exclude mimics like sinus thrombosis). This creates an argument for a joint-specialist clinic for the management of IIH.

1. Fisayo A, Bruce B, Newman N, Biousse V. Overdiagnosis of idiopathic intracranial hypertention. Neurology 2016;86:341-350.

2. McCluskey G, Mulholland DA, McCarron P, et al. Idiopathic intracranial hypertension in the northwest of northern Ireland: epidemiology and clinical management. Neuroepidemiology 2015;45:34-39.

For disclosures, please contact the editorial office at [email protected].

29 January 2016
Overdiagnosis of IIH: Author response to Dr. Avasarala
Valerie Biousse
Nancy J. Newman

We thank Dr. Avasarala for the comments on our article. [1] Indeed, the results were surprising, but not shocking given the potential difficulties in examining the ocular fundus. [2] As emphasized in the article, the most common source of error was thinking biases leading the provider to make a pre-established diagnosis of idiopathic intracranial hypertension (IIH) before, or even without, examining the ocular fundus. It can be difficult to be sure that an optic nerve is normal or mildly swollen, even for ophthalmologists. In these cases, the overall evaluation of the patient guides the clinician who makes a final diagnosis based on the whole picture and not just on the optic nerve appearance. Although retinal photography (especially non-mydriatic fundus cameras) can help the non-ophthalmologist tremendously in the diagnosis of papilledema, [3] identification of mild papilledema on retinal photography is also sometimes challenging, and no automated software is currently able to recognize subtle optic nerve changes.

This is obviously an important area of research which will greatly improve over the next few years. Better use of technology combined with increased awareness about the influences of biases and their effects on clinical reasoning is the best remedy for diagnostic error.

1. Fisayo A, Bruce BB, Newman NJ, Biousse V. Overdiagnosis of idiopathic intracranial hypertension. Neurology Epub 2015 Dec 30.

2. Mackay DD, Garza PS, Bruce BB, Newman NJ, Biousse V. The demise of direct ophthalmoscopy: A modern clinical challenge. Neurol Clin Pract 2015;5:150-157.

3. Bruce BB, Biousse V, Newman NJ. Nonmydriatic ocular fundus photography in neurologic emergencies. JAMA Neurol 2015;72:455-459.

For disclosures, please contact the editorial office at [email protected].

26 January 2016
The bane of diagnosis of IIH
Jagannadha Avasarala, Associate Prof of Neurology

I read with interest the recent article by Fisayo et al. on overdiagnosis of idiopathic intracranial hypertension (IIH). I found it shocking and beyond comprehension that the "lion's share" of errors come from ophthalmologists (61.2%) and neuro-ophthalmologists (21.8%). [1] These physicians, the creme de la creme, are supposed to be the last word on fundus evaluation, even if discounting optometrians in the study (54%) who were missing in action when a good fundus evaluation was required. One may pardon optometricians for their snafus, but they are also the first line of defense for a majority of patients. Excessive treatment protocols, expense, and uncertainty for the patient apart, it is unfortunate and scary to note that those entrusted with evaluation of an important sensory organ are erring summarily. It is appalling that neuro-ophthalmologists came up so shockingly short. Perhaps large databases with abnormal fundus pictures should be built, letting computer-driven algorithms run pattern-recognition software to standardize early changes that reflect IIH. This could be replicated in other diseases, as well. Diabetic retinopathy is already being characterized by software driven protocols and more will come.

1. Fisayo A, Bruce BB, Newman NJ, Biousse V. Overdiagnosis of idiopathic intracranial hypertension. Neurology Epub 2015 Dec 30.

For disclosures, please contact the editorial office at [email protected].

13 July 2016
A Headache Medicine Subspecialty Commentary on "Overdiagnosis of Idiopathic Intracranial Hypertension"
Paul G. Mathew, Assistant Professor of Neurology
Umer Najib, MD, Regina Krel, MD, Paul B. Rizzoli, MD, FAAN, FAHS, Boston, MA

Fisayo et al. proposed that overweight women with headaches are inappropriately subjected to invasive tests and aggressive treatment prior to referral to neuro-ophthalmology. [1] The suggestion that patients with probable idiopathic intracranial hypertension (IIH) should have a neuro-opthalmologist confirm papilledema prior to diagnosis and treatment is impractical and dangerous as consultation wait times can last months. There are only 412 registered neuro-ophthalmologists in the United States, and some states (Wyoming, Montana, and North Dakota) have no neuro-ophthalmologists. [2]

Most IIH patients have papilledema, but IIH without papilledema can occur. [3] Some patients with IIH without papilledema may have fluctuating papilledema with or without treatment, which can generate false negatives. Factors suggestive of IIH include obesity, female gender, orthostatic component (i.e worse with recumbency), transient visual obscurations, headache improvement with vomiting, and pulsatile tinnitus. [4] Checking opening pressure via lumbar puncture (LP) is a diagnostic requirement, [3] and can be therapeutic.

Prior to MRI and LP evaluations, empiric treatment can prevent potential permanent visual impairment. To delay treatment of probable IIH is comparable to delaying steroids in the setting of probable temporal arteritis in order to secure a better biopsy sample. Confirming papilledema is useful, but should not delay evaluation and treatment.

1. Fisayo A, Bruce BB, Newman NJ, Biousse V. Overdiagnosis of idiopathic intracranial hypertension. Neurology 2016;86:341-350.

2. Find a Neuro-Opthalmologist. In: North American Neuro-Ophthalmology Society. Available at: http://www.nanosweb.org/i4a/member_directory/feSearchForm.cfm?directory_id=3&pageid=3393&showTitle=1&showDebugOutput=false&widgetPreview=0&page_version=. Accessed May 2, 2016.

3. Headache Classification Committee of the International Headache Society (IHS). The international classification of headache disorders, 3rd edition (beta version). Cephalalgia 2013;33:629-808.

4. Wall M, Kupersmith MJ, Kieburtz KD, et al. The idiopathic intracranial hypertension treatment trial: clinical profile at baseline. JAMA Neurol 2014;71:693-701.

For disclosures, please contact the editorial office at [email protected].

Information & Authors

Information

Published In

Neurology®
Volume 86Number 4January 26, 2016
Pages: 341-350
PubMed: 26718577

Publication History

Received: July 1, 2015
Accepted: September 16, 2015
Published online: December 30, 2015
Published in print: January 26, 2016

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Disclosure

A. Fisayo reports no disclosures relevant to the manuscript. B. Bruce is a consultant for MedImmune (data and safety monitoring board) and Bayer (medicolegal). N. Newman is a consultant for GenSight Biologics, Trius Therapeutics, and Santhera. V. Biousse is a consultant for GenSight Biologics. Go to Neurology.org for full disclosures.

Study Funding

Supported in part by an unrestricted departmental grant (Department of Ophthalmology) from Research to Prevent Blindness, Inc., New York, and by NIH/NEI core grant P30-EY006360 (Department of Ophthalmology). Dr. Bruce receives research support from the NIH/NEI (K23-EY019341).

Authors

Affiliations & Disclosures

Adeniyi Fisayo, MD
From the Departments of Ophthalmology (A.F., B.B.B., N.J.N., V.B.), Neurology (B.B.B., N.J.N., V.B.), and Neurological Surgery (N.J.N.), Emory University School of Medicine; and the Department of Epidemiology (B.B.B.), Rollins School of Public Health and Laney Graduate School, Emory University, Atlanta, GA.
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
Beau B. Bruce, MD, PhD
From the Departments of Ophthalmology (A.F., B.B.B., N.J.N., V.B.), Neurology (B.B.B., N.J.N., V.B.), and Neurological Surgery (N.J.N.), Emory University School of Medicine; and the Department of Epidemiology (B.B.B.), Rollins School of Public Health and Laney Graduate School, Emory University, Atlanta, GA.
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
Nancy J. Newman, MD
From the Departments of Ophthalmology (A.F., B.B.B., N.J.N., V.B.), Neurology (B.B.B., N.J.N., V.B.), and Neurological Surgery (N.J.N.), Emory University School of Medicine; and the Department of Epidemiology (B.B.B.), Rollins School of Public Health and Laney Graduate School, Emory University, Atlanta, GA.
Disclosure
Scientific Advisory Boards:
1.
NONE
Gifts:
1.
NONE
Funding for Travel or Speaker Honoraria:
1.
NONE
Editorial Boards:
1.
(1) Journal of Neuro-Ophthalmology, editorial advisory board, > 5 years (2) American Journal of Ophthalmology, executive editor, > 5 years
Patents:
1.
NONE
Publishing Royalties:
1.
(1) Neuro-Ophthalmology Illustrated, Thieme, 2009 (2) Walsh & Hoyt's Clinical Neuro-Ophthalmology The Essentials, 1st and 2nd editions, Lippincott Williams and Wilkins, 1999, 2008 (3) Walsh & Hoyt's Clinical Neuro-Ophthalmology, Lippincott Williams and Wilkins, 5th and 6th editions, 1998, 2005 (4) Blue Books of Neurology: Neuro-Ophthalmology, Butterworth Heinemann Elsevier, 2008
Employment, Commercial Entity:
1.
NONE
Consultancies:
1.
Trius Pharma -- consultant Gensight -- consultant Santhera -- consultant
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.
Research to Prevent Blindness, New York, N.Y., unrestricted departmental grant, Lew R. Wasserman Merit Award, > 5 years
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.
has provided expert testimony on multiple topics in multiple medical legal settings
Valerie Biousse, MD
From the Departments of Ophthalmology (A.F., B.B.B., N.J.N., V.B.), Neurology (B.B.B., N.J.N., V.B.), and Neurological Surgery (N.J.N.), Emory University School of Medicine; and the Department of Epidemiology (B.B.B.), Rollins School of Public Health and Laney Graduate School, Emory University, Atlanta, GA.
Disclosure
Scientific Advisory Boards:
1.
NONE
Gifts:
1.
NONE
Funding for Travel or Speaker Honoraria:
1.
NONE
Editorial Boards:
1.
Editorial boards of: American Journal of Ophthalmology; Journal of Neuro-ophthalmology
Patents:
1.
NONE
Publishing Royalties:
1.
Walsh and Hoyt's Clinical Neuro-Ophthalmology (Lippincott Williams & Wilkins, 2007); Neuro-Ophthalmology Illustrated (Thieme, 2009); Up-to-Date
Employment, Commercial Entity:
1.
NONE
Consultancies:
1.
GenSight. Consultant
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.
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.
NONE

Notes

Correspondence to Dr. Biousse: [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.

Author Contributions

Adeniyi Fisayo: study conceptualization and design, data analysis and interpretation, drafting and revising the manuscript. Beau B. Bruce: study conceptualization and design, data analysis and interpretation, drafting and revising the manuscript. Nancy J. Newman: study conceptualization and design, data analysis and interpretation, drafting and revising the manuscript. Valerie Biousse: study conceptualization and design, data analysis and interpretation, drafting and revising the manuscript.

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