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Documenting the Patient Perspective

Posted by Cynthia Ryan

In 2014, VEDA asked members to assist in a research project by signing onto a patient registry and providing information on their diagnosis experience. This data was analyzed and the results published in the Journal of Otology and Neurotology.

We are grateful that over 500 members signed up and provided information which has resulted in important insights. Data was initially collected from March 2014 through October 2015. There were 521 respondents by the end of that period. 

The patient registry was a collection point for data on vestibular patients’ experience with healthcare providers as they the searched for an accurate diagnosis and effective treatment. Data related to diagnostics, treatment, quality of life and healthcare costs was collected. In 2016, in collaboration with Dr. Michael Schubert from Johns Hopkins University, VEDA published a white paper on our findings in the Journal of Otology and Neurotology.

THE KEY FINDINGS:

Most Common Diagnoses

  • The top four diagnoses reported by participants were Meniere’s disease (25%), vestibular migraine (18%), vestibular neuritis (17%), and BPPV (15%). 
  • Patients who reported having Meniere’s also tended to report a concurrent vestibular diagnosis (e.g. vestibular migraine, vestibular neuritis, and BPPV).1
  • 25% of respondents reported having Meniere’s, which is higher than previous research studies have estimated (i.e. 14%).1 This could indicate that the Meniere’s diagnosis was disproportionately given (e.g. because of healthcare providers’ familiarity with that disease versus other less familiar vestibular disorders), or that one diagnosis was originally given and later a different diagnosis was given, either because both occur concurrently or the first diagnosis was made in error.

Patients Concerns about Accuracy of Diagnosis

  • A wide range of healthcare provider specialties were involved in diagnosing patients, yet only 20% of participants felt that they received an accurate and timely diagnosis.1 This could indicate that patients were not referred to the appropriate specialist for their particular condition, and/or that testing and evaluations procedures are not followed consistently by the different specialists.
  • 18% of participants felt that their healthcare provider misdiagnosed their condition.1
  • 17% of participants were told by their healthcare provider that their dizziness would go away on its own.1 While we know that this does sometimes occur, we also know that unless the root cause is identified and treatment prescribed, the dizziness often returns.

Other Observations about Treatment and Timeliness of Diagnosis

  • Nearly half of the respondents reported being treated with canalith repositioning maneuvers, but only 15% reported having BPPV1, indicating an overuse of these maneuvers as a treatment.
  • 81% of BPPV patients reported being treated with canalith repositioning maneuvers, but only 52% said that it reduced their symptoms, indicating that they may have been misdiagnosed.
  • Most participants reported seeing a healthcare provider within one month of their dizziness onset, but the time to reach a diagnosis was much longer (>50% required 5 months or longer), confirming subjective reports that vestibular patients are not diagnosed in a timely manner.1
  • 45% of participants reported that they were currently receiving medications to treat either a specific diagnosis or relieve dizziness,1 despite the fact that most medications only cover up symptoms and are most effective in acute cases, but do not treat the underlying condition. 
  • 87% of Meniere’s patients made dietary changes, with 50% reporting that their symptoms improved. 76% of vestibular migraine patients made dietary changes, with 41% reporting that they helped reduce symptoms.
  • The average person visited their healthcare provider 3.5 times to treat their dizziness.1
  • 96% of Meniere’s patients reported experiencing tinnitus, and 83% said they had hearing loss.
  • Only 66% of vestibular migraine patients report having headaches.

KEY DIFFICULTIES OF DIAGNOSIS

Dizziness is a difficult symptom to describe, which can confound doctors’ efforts to evaluate patients and offer an accurate diagnosis. There is a need for standardized terminology that differentiates between different forms of dizziness – e.g. vertigo, off balance, dizzy, lightheaded - which has been identified in several previous research studies.

In addition, we know that many vestibular patients suffer from concurrent cognitive disorders as a result of their condition. This can make it difficult to articulate their symptoms accurately.

We know from subjective reports by vestibular patients that they have a difficult time getting an accurate diagnosis that explains their symptoms; this data supports that claim. The data also suggests that many patients are not referred to the appropriate specialist, and that “common” vestibular diagnoses are generously given (e.g. Meniere’s and BPPV), when in fact the patient may have a different underlying condition.

In Summary

This study has demonstrated the value of the vestibular patient perspective, confirming many of your individual observations and highlighting important areas for improvement of the diagnostic process. Thank you to all who took the time to volunteer the details of their experience.

Note: VEDA continues to collect data through our patient registry so that we can document changes in vestibular diagnosis and treatment efficacy over time. You can participate by going to vestibular.org/registry.

Resource: 1. To-Alemanji, Jessica, Cynthia Ryan, and Michael C. Schubert. “Experiences Engaging Healthcare When Dizzy.” Otology & Neurotology 37.8 (2016): 1122-1127.
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