A cross-sectional study was used to examine the international vocabulary used for tinnitus using an anonymous online questionnaire which was developed for the purposes of the project. Ethical approval was obtained from the University of Nottingham Faculty of Medicine and Health Science Ethics Committee (FMHS 155-0121) and Committee for Medical Ethics of the University Hospital Antwerp (B3002021000031) prior to data collection.

Participants were recruited online using an opportunity sampling method in which they were provided with an anonymous link to the questionnaire. The study link was advertised to participants (public and professional) on social media sites including Facebook, LinkedIn, and Twitter, and to colleagues within the University of Nottingham Hearing Sciences, University of Antwerp, and Antwerp University Hospital. Criteria for inclusion in the study was the ability to understand, read and write English language sufficiently to complete the questionnaire, the ability to complete the questionnaire online, and being an adult (age 18 years or over). A total of 239 participants met the criteria to take part in the study, however 12 of these participants did not complete key sections of the questionnaire and their data were removed. Therefore, the final sample consisted of 227 participants with complete data that was analyzed.

A single online questionnaire was developed for the purpose of the study and hosted on Bristol Online Surveys Joint Information Systems Committee (JISC) platform. Participants were first asked to provide basic demographic information including age and occupation (if any), this was followed by questions relating to the languages they most commonly speak, the terms used for tinnitus in their language and meanings in English, the connotations of the word and finally if they experience tinnitus themselves. A detailed overview of the questionnaire can be seen in Supplementary Material 1.

Participants were initially directed to the study via an anonymous link. Upon clicking the link participants were presented with a page providing information about the nature of the study. This included the study aims to ensure that informed consent was obtained before taking part and inclusion/exclusion criteria. The information page also stated that participation in the study was entirely voluntary, there was no obligation to take part and participants may withdraw at any point during the study. The information page presented the participants with a statement regarding the use of their data and rights, data protection, and information on the study’s ethical approval. The contact details of the research team were provided for any further information about the study. Before consenting, participants were asked to carefully read the information and consent statements on the first page of the survey. Participants then completed the questionnaire and were presented with debrief information and contact details of the research team.

The bottom-up (inductive) thematic analysis methodology (Braun and Clarke, 2006) was followed in order to create codes for the words and phrases, which were collected in the survey, and these codes were grouped into themes (including “miscellaneous” to house codes that do not fit into the three main themes). This methodology implies that the codes are created by highlighting and making notes and that the themes identified are strongly linked to the data, instead of trying to fit it into pre-existing codes. Two researchers independently coded the data (DB and CC). Every difference was discussed and a final coding was agreed on.

Data were analyzed using SPSS statistical software version 27 (SPSS Inc., Chicago, IL, United States). In order to compare data of participants with and without tinnitus, chi-square-tests were conducted. More specifically, the themes of the words and phrases reported by these two groups were compared, as well as the attributed connotations.

Table 1 displays demographic information for the 227 participants. Participants ranged from 18 years to 75+ years old. The majority of participants (66.1%) had a health-related profession, of which 41% of the participants were related to Audiology. A total of 59% of participants’ professions also involved conducting research, the most common area of research was Health Care (54.5%). The majority of participants indicated they experienced tinnitus themselves (53.3%), 45.4% did not experience tinnitus, and 1.3% preferred not to say.

Figure 1 outlines the countries in which the participants were from. A total of 48 countries were identified. A full list of the countries and their corresponding languages can be found in Supplementary Material 2. Most participants were from Europe (47.1%) and Asia (31.7%). The other continents reached were North America (11.2%), South America (5.7%), Africa (2.4%), and Oceania (1.9%).

A total 42 languages were identified, 33.5% of participants spoke English, 54.2% spoke English and one other language, 11.9% spoke English and two other languages, and 0.4% spoke English and four other languages.

A full list of words and phrases identified as synonyms for tinnitus in the different languages can be found in Supplementary Material 3. Participants were able to provide up to three words and phrases to describe tinnitus symptoms. A total of 252 words or phrases were provided. Using the bottom-up (inductive) thematic analysis methodology (Braun and Clarke, 2006), nine codes were created for the words and phrases collected in the survey and these codes were grouped into four themes (i.e., pathophysiology, lived experience, perception, miscellaneous). The codes and overarching themes are presented in Figure 2. A total of 32 differences in coding between the two researchers were discussed in order to reach this final coding. Participants experiencing tinnitus significantly differed on the codes for their proposed words or phrases (X² = 52.08; p < 0.001; V = 0.18), with the code “internal suffering or irritation or intrusion” being more prevalent and the code “relate to ear” and “sound is phantom or not real or imagined” being less prevalent in this group (Figure 3).

As shown in Figure 4, most of the words and phrases had a slightly negative (40%) or very negative (23%) connotation according to the participants. Only 4% of the words and phrases were slightly or very positive. There was a significant difference between participants with tinnitus or without tinnitus in terms of the connotations attributed to the words and phrases (X² = 11.93; p = 0.018; V = 0.21), with tinnitus patients attributing more often a “very negative” connotation.

Most meanings of the words and phrases for the tinnitus experience in different languages could be categorized as “lived experience.” Words and phrases that described the sound were most common within this theme, as for example hissing (English), rauschen (“rushing” in German), çınlama or çıtırtı (“ringing” or “crackle” in Turkish), shabdam or kadal (“sound/noise” or “sea” in Malayalam), dzwonienie (“ringing” in Polish) or vez vez (“buzzing” in Persian). Instead of describing the sound, some words just sound similar to the referred noise (i.e., onomatopeic), as with piep (“beep” in Dutch) or zumbido (“buzz” in Portuguese). More rarely, the words or phrases were related to the internal suffering, irritation or intrusion. For example, terms as “interference” or “invasive” came up in the survey, which were often suggested by participants with tinnitus themselves, and as such, probably reflecting their own experiences. Hence, the code “internal suffering or irritation or intrusion” was more prevalent in the vocabulary of participants experiencing tinnitus.

Within the theme of “pathophysiology,” words and phrases were often related to medical or scientific terms. More specifically, 17% of all responses were similar to tinnitus or auditory hallucinations. A note of caution is due here as the overrepresentation of healthcare professions in the sample may have led to a potential bias. Tinnitus seems also to be used in other languages, such as Dutch and Norwegian. However, some languages have their own medical term for it: acouphène (French), acúfenos (Spanish), acufene or tinnito (Italian), çınlama (Turkish), тиннитус (Russian) or Miminari (Japanese). Other words and phrases referred to the role of the ear, which were more prevalent in the non-tinnitus group. Most of the time the role of the ear was combined with a description of the sound (which was also classified within the “lived experience” theme): ringing in the ears (English), oorsuizen (“earsizzle” in Dutch) and Øresus (“earwhoosing” in Norwegian), ohrgeräusche (“earsizzle” in German), kaan me awaz (“sound in ears” in Hindi), fulzugas (“noise in the ear” in Hungarian), шум B ушах (“noise in ears” in Russian).

As tinnitus is in most cases subjective and as such solely perceived by the patient, 18% of the words and phrases referred to this aspect. Similarly to tinnitus being called a “phantom sound” in English, “fantoomgeluid” is used in Dutch. However, this terminology was more often reported by non-tinnitus patients. Moreover, the subjective aspect was emphasized in responses such as “internal noise.”

Some responses could not be categorized in one of the three main themes. For example, the response that the mother tongue did not have a word for it. One participant reported the lack of a word for it in Urdu. Another participant that spoke Sinhalese contacted us after the survey with a similar remark, and even did not know of the existence of tinnitus before the start of their PhD on tinnitus. This draws the attention toward the importance of the current research. A further study could provide the questions in the mother tongue of the participants, while the current findings may be somewhat limited by the need to understand, read and write English language sufficiently to complete the questionnaire.

This research has implications for the vocabulary used for tinnitus in Patient Reported Outcome Measures, especially as outcomes might be influenced by the terminology having a negative connotation. This study also draws attention to the understanding the lived experiences of people with tinnitus, as there were significant differences between participants experiencing tinnitus or not. Continued efforts are needed with regard to the vocabulary of tinnitus used by clinicians and researchers. Their vocabulary to be known and understood by the public and cover the wide range of tinnitus perceptions and experiences. Future research could validate the current findings by providing the survey in different languages and with respect to cultural differences.