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Lee K, Vijayendra VK, Bedri E, Honnurappa V, Redleaf M. Concerns of Patients With Ménière Disease in Ethiopia, India, and the United States. JAMA Otolaryngol Head Neck Surg. 2020;146(5):496–497. doi:10.1001/jamaoto.2019.2663
Classic Ménière disease is easily identified by the experienced otologist.1 But how do patients feel about their disease? Surprisingly, patients with Ménière disease whose vestibular symptoms were reduced or eliminated in a recent study did not rate their overall condition as improved.2 Herein we report a survey of a convenience sample of patients with Ménière disease in Ethiopia, India, and the United States to assess their concerns associated with the disease.
Seventeen patients from 3 institutions in Ethiopia, India, and the United States were identified for this survey. Each institution’s institutional review boards approved this study and waived the need for written informed consent. The survey included 136 questions that addressed patient’s daily activities that might be affected by Ménière disease as well as adaptive modifications to manage the disease, self-image, and understanding of the disease (Table 1). Surveys were administered via telephone or in-person interviews. Responses in the patients’ native languages were translated into English by the Ethiopian and Indian physicians. The diagnosis of classic Ménière disease established by medical history, physical examination, audiometry, and response to medication.1
In Ethiopia 9 patients with Ménière disease were invited to participate. Six agreed to telephone interviews, which lasted approximately 90 minutes. These participants were aged 27 to 54 years, 4 women and 2 men, and diagnosed within the past 2 years.
In India 10 patients were invited and 5 agreed to face-to-face interviews, which lasted 30 to 40 minutes. These participants were aged 30 to 67 years, 1 woman and 4 men, and diagnosed 1 month to 7 years prior.
In the United States, 42 solicitation letters were sent to English-speaking patients with Ménière disease. Twenty-four people were reached by telephone, 6 agreed to telephone interviews, which lasted 60 minutes. These participants were aged 42 to 71 years, 2 women and 4 men, and diagnosed 3 to 40 years previously.
Table 2 outlines how the 17 patients—6 from Ethiopia, 5 from India, and 6 from the United States—provided similar answers: 10 patients stated that they had made modifications to driving, use of power tools, climbing ladders, or swimming to avoid injuring themselves or others during an episode (2 stated emphatically how useful their aura was to keep themselves and others safe). Nine felt they were no longer the same person owing to their hearing loss, the shame of hearing loss, and living in fear of another episode. Eight reported feeling depressed because they would never be cured of the disease and by the knowledge that they could become incapacitated by vertigo at any time. Nine wanted associates to understand that their episodes were very uncomfortable, but not life-threatening. Seven patients volunteered that reading or even viewing their television, mobile phone, or computer screens was impossible during an episode and afterward. Surprisingly, the patients reported that the disease had little to no effect on their finances.
This survey focused only on a convenience sample of patients with the symptoms of classic vestibular-cochlear Ménière Disease in Ethiopia, India, and the United States.1 We did not administer previously used self-assessment tools,3-6 because we wanted to identify patients’ detailed day-to-day experiences. Solicitation proved difficult at each center, and these findings are not representative or generalizable. Another weakness of this survey was the failure to ask about headache or migraine.
Nonetheless, the physical limitations and psychological concerns associated with Ménière disease were common among the patients from these 3 countries. The patients were discouraged that they would never be rid of their disease, their hearing loss, and the threat of another episode. Furthermore, in all 3 locations, patients indicated that they wanted their associates to know that they had an invisible disease that could be quite uncomfortable, but not life-threatening. A practical response to this survey’s findings might be patient counseling about chronicity of Ménière disease to help reduce the fear of the next episode and to help plan strategies to manage episodes at work.
Corresponding Author: Miriam Redleaf, MD, Department of Otolaryngology–Head and Neck Surgery, University of Illinois Hospitals, Chicago, 1855 W Taylor St, Ste 2.42, Chicago, IL 60612 (firstname.lastname@example.org).
Accepted for Publication: August 6, 2019.
Published Online: April 9, 2020. doi:10.1001/jamaoto.2019.2663
Author Contributions: Dr Redleaf had full access to all of the data in the study and takes responsibility for the integrity of the data and the accuracy of the data analysis.
Concept and design: Lee, Redleaf.
Acquisition, analysis, or interpretation of data: All authors.
Drafting of the manuscript: Redleaf.
Critical revision of the manuscript for important intellectual content: All authors.
Administrative, technical, or material support: Lee, Vijayendra, Honnurappa.
Study supervision: Honnurappa, Redleaf.
Conflict of Interest Disclosures: None reported.
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