Support outcome measures that reduce misdiagnosis of dizziness and stroke

Vestibular disorders are underdiagnosed and undertreated, often with severe consequences for patients, including increased medical costs, loss of time worked, and less quantifiable, but equally relevant, negative impacts on quality of life.

Also troubling is the lack of clear diagnostic criteria for some vestibular disorders, and even more concerning is evidence that when such criteria do exist, they are not always followed. Ensuring accurate and efficient diagnosis for these patients is expected to reduce suffering through prompt and appropriate treatments, some of which may be lifesaving. In addition, patients will be able to get back to work and other normal life activities.

VeDA has heard from thousands of people who have been negatively impacted by an inaccurate diagnosis sometimes resulting in years or a lifetime of challenges, including loss of work, relationships, and the ability to care for themselves. Some of these major adverse effects can be avoided with improved diagnostic care in emergency and urgent care settings.

Avoid Hospitalization After Release with a Misdiagnosis—ED Stroke/Dizziness (Avoid H.A.R.M.) is a performance measure that tracks the rate of adult patients treated and released from the Emergency Department (ED) with a “benign dizziness” diagnosis who were subsequently admitted to a hospital for a stroke within 30 days of their ED visit. In other words, it focuses attention on making sure that diagnosis of those with dizziness is as accurate as possible.

The goal of the measure is to create a mechanism for rewarding more accurate diagnosis of dizziness and vertigo, including both inner ear vestibular disorders and stroke. Having such a measure could promote a stronger focus on training in vestibular diagnosis, more routine access to those with vestibular expertise, and improved use of appropriate diagnostic tests.

The AVOID H.A.R.M team is led by Dr. David Newman-Toker, a neurologist at Johns Hopkins University School of Medicine, who specializes in diagnosis of dizziness and vertigo. This new outcome measure could reduce misdiagnosis of those with dizziness and stroke in the ER.

If you or someone you love has suffered a delayed, missed, or wrong diagnosis of dizziness, vertigo, inner ear disease, or stroke, you can help by submitting a public comment in support of the AVOID H.A.R.M. measure to the Partnership for Quality Measurement (PQM, powered by Battelle), an entity that reviews and endorses health care performance measures. PQM’s Patient Safety committee has reviewed the AVOID H.A.R.M measure and recommended the measure for endorsement. Comments supporting the endorsement recommendation are important, particularly when they come from patients or families with lived experience. Below are instructions on how to submit a public comment. Below those instructions are some talking points you can use in your comment if you find that helpful. However, the most powerful comment you can share is your own personal story about how you and/or your loved one has been impacted by misdiagnosis of dizziness, vestibular disorders, or stroke. Public comments are accepted through Wednesday, September 13th at 11:59 p.m. (Eastern Time).

Instructions for submitting a public comment in support of the AVOID H.A.R.M. measure

1. Click here to submit your public comment.
2. You will be asked to fill out a small number of fields, – your name, your organization (if applicable), and how you heard about the commenting opportunity (you can choose “other”).
3. At the bottom of the form will be the opportunity to type in your comment.
4. You will then need to answer a VERY simple math problem (to make sure you are a human) and can then hit submit.
5. Comments are reviewed by Battelle staff and then will be publicly posted.

If you are interested in reviewing comments that were submitted previously in support of this measure, please visit: https://p4qm.org/endorsements/measure/6031.

Examples of language that could be used in a public comment (feel free to adapt or modify):

• I am (we are) writing in strong support of the Patient Safety committee’s recommendation to endorse measure #3746 – Avoid Hospitalization After Release with a Misdiagnosis—ED Stroke/Dizziness (Avoid H.A.R.M.—ED Stroke/Dizziness).
• There is a pressing need for a performance measure of misdiagnosis of strokes in patients that come to the emergency department with dizziness. The greatest risk of missed stroke is in patients whose symptoms are dizziness or vertigo. In US emergency departments each year, an estimated 45,000-75,000 patients with strokes that manifest with dizziness or vertigo are misdiagnosed and may miss treatment opportunities.
• This measure is important to patients, as we continue to seek improvements in the quality and safety of care that is delivered in the US health care system.
• Until we can understand current diagnostic performance in this area, it will be difficult for the US health care system to prioritize interventions for improvement.
• This measure would be the first performance measure of stroke misdiagnosis in US hospital emergency departments and would be transformational for the field.

As noted above, If you feel comfortable, PLEASE include in your comment your own story about how you and/or your loved one has been impacted by misdiagnosis. Comments offered in your own voice convey the most powerful messages.