Introduction: Chronic tinnitus is a condition estimated to affect 10–15% of the population. No treatment has shown efficacy in randomized clinical trials to reliably and effectively suppress the phantom perceptions, and little is known why patients react differently to the same treatments. Tinnitus heterogeneity may play a central role in treatment response, but no study has tried to capture tinnitus heterogeneity in terms of treatment response. Research Goals: To test if the individualized treatment response can be predicted using personal, tinnitus, and treatment characteristics. Methods: A survey conducted by the web platform Tinnitus Hub collected data of 5017 tinnitus bearers. The participants reported which treatments they tried and the outcome of the given treatment. Demographic and tinnitus characteristics, alongside with treatment duration were used as predictors of treatment outcomes in both an univariate as well as a multivariate regression setup. First, simple linear regressions were used with each of the 13 predictors on all of 25 treatment outcomes to predict how much variance could be explained by each predictor individually. Then, all 13 predictors were added together in the elastic net regression to predict treatment outcomes. Results: Individual predictors from the linear regression models explained on average 2% of the variance of treatment outcome. “Duration of treatment” was the predictor that explained, on average, most of the variance, 6.8%. When combining all the predictors in the elastic net, the model could explain on average 16% of the deviance of treatment outcomes. Discussion: By demonstrating that different aspects predict response to various treatments, our results support the notion that tinnitus heterogeneity influences the observed variability in treatment response. Moreover, the data suggest the potential of personalized tinnitus treatment based on demographic and clinical characteristics.

For understanding the heterogeneity of tinnitus, large samples are required. However, investigations on how samples recruited by different methods differ from each other are lacking. In the present study, three large samples each recruited by different means were compared: N = 5017 individuals registered at a self-help web platform for tinnitus (crowdsourcing platform Tinnitus Talk), N = 867 users of a smart mobile application for tinnitus (crowdsensing platform TrackYourTinnitus), and N = 3786 patients contacting an outpatient tinnitus clinic (Tinnitus Center of the University Hospital Regensburg). The three samples were compared regarding age, gender, and duration of tinnitus (month or years perceiving tinnitus; subjective report) using chi-squared tests. The three samples significantly differed from each other in age, gender and tinnitus duration (p < 0.05). Users of the TrackYourTinnitus crowdsensing platform were younger, users of the Tinnitus Talk crowdsourcing platform had more often female gender, and users of both newer technologies (crowdsourcing and crowdsensing) had more frequently acute/subacute tinnitus (<3 months and 4–6 months) as well as a very long tinnitus duration (>20 years). The implications of these findings for clinical research are that newer technologies such as crowdsourcing and crowdsensing platforms offer the possibility to reach individuals hard to get in contact with at an outpatient tinnitus clinic. Depending on the aims and the inclusion/exclusion criteria of a given study, different recruiting strategies (clinic and/or newer technologies) offer different advantages and disadvantages. In general, the representativeness of study results might be increased when tinnitus study samples are recruited in the clinic as well as via crowdsourcing and crowdsensing.

Background: Tinnitus can be influenced by changes in somatosensory afference from the cervical spine or temporomandibular area, then called somatosensory or somatic tinnitus (ST). In 2018, a new set of diagnostic criteria for ST was agreed upon by a large group of ST experts. Currently, however, it still requires extensive and specific expertise to diagnose ST correctly. The next step in the development of easily applicable diagnostic criteria is to assess the diagnostic value of each individual criterion. Objectives:The aim of this study was, therefore, to further investigate the diagnostic value of these criteria, validate them empirically, and identify their sensitivity and specificity.Methods: An online survey, questioning the presence of 12 diagnostic criteria for ST in a convenience sample of participants with tinnitus, was launched on the online forum Tinnitus Talk, managed by Tinnitus Hub. Participants were divided into three groups: a group with no somatic influence, a group with some somatic influence and a group with large somatic influence on their tinnitus. Chi-square tests were used to calculate differences between these groups. Afterward, sensitivity, specificity, positive and negative likelihood ratios (LR), and pre-and posttest probabilities were calculated for each ST diagnostic criterion. For this analysis, all patients with some and large somatic influence were compared as one group to the group with no somatic influence. Results:In total, 8221 participants filled out the online survey. As expected, the diagnostic criteria for ST are more prevalent in the groups with somatic influence, but the criterium of tinnitus modulation also often occurs in the group with no somatic influence. The simultaneous onset or increase and decrease of both tinnitus and pain complaints have the highest positive LR (6.29 and 10.72, respectively), next to the influence of certain postures on the tinnitus (+LR: 6.04). To rule out ST, the absence of neck pain or tension in the neck extensor muscles are most suited, as they decrease the posttest probability to 18% and 19%, respectively. Conclusion:The simultaneous onset or increase and decrease of tinnitus and neck or jaw pain and the influence of certain postures are most suited to use as a single criterion for identifying patients with a somatic influence on their tinnitus. On the other hand, the absence of neck pain or tension in the neck extensor muscles is valid criterion to rule out a somatic influence. Additional analysis is needed to identify clusters of symptoms and criteria to further aid ST diagnosis.

Background Tinnitus, or ringing in the ears, is a phantom perception of sound in the absence of overt acoustic stimulation. Many patients indicate that the perception of their tinnitus is not constant and can vary from moment to moment. This tinnitus fluctuation is one of the diagnostic criteria for somatosensory tinnitus (ST), a tinnitus subtype that is influenced by cervical spine or temporomandibular dysfunctions, although various factors have been reported to cause fluctuations in tinnitus, such as stress, anxiety, and physical activity. Objective The aim of this study was twofold: (1) to investigate the presence of physical symptoms in a large group of participants with tinnitus and (2) to investigate if these physical symptoms are more frequently present in a subgroup of participants with ST. Methods A Web-based survey, questioning the presence of physical symptoms in a convenience sample of participants with tinnitus, was launched on the online forum, Tinnitus Talk, managed by Tinnitus Hub. After a general analysis of the physical symptoms present in our survey population, we further analyzed the group of participants who were diagnosed by a physician (n=1262). This subgroup was divided into 2 groups, one group diagnosed with ST and another group diagnosed with other types of tinnitus. Results In total, 6115 participants with a mean age of 54.08 years (SD 13.8) completed the survey. Physical symptoms were frequently present in our sample of participants with tinnitus: 4221 participants (69.02%) reported some form of neck pain, 429 (7.01%) were diagnosed with temporomandibular disorders, 2730 (44.64%) indicated they have bruxism, and between 858 and 1419 (14.03%-23.20%) participants were able to modulate their tinnitus by voluntary movements. ST was diagnosed in 154 out of 1262 (12.20%) participants whose tinnitus cause was diagnosed by a physician. Symptoms referring to the known diagnostic criteria were evidently more present in the ST group than in the non-ST group. Additionally, participants with ST more often indicated a negative effect of a bad night’s sleep (P=.01) and light intensity exercise (P=.01). Conclusions Physical activity and movement (disorders) frequently affect tinnitus severity. Head-neck related symptoms are more frequently reported in the ST group, as is the ability to modulate the tinnitus by head or jaw movements. Additionally, participants with ST more often report fluctuations of their tinnitus and reaction to sleeping difficulties and low intensity exercise.

Background A minimum standard based upon consensus decision making recommends a core set of tinnitus-specific health complaints (outcome domains) that should be assessed and reported in all clinical trials as this enables comparisons to be made across studies as well as data pooling for meta-analysis. Objective This study aimed to further clarify how the outcome domain concepts should be defined for 5 of the core set: tinnitus intrusiveness, sense of control, acceptance of tinnitus, concentration, and ability to ignore. This step requires a clear and fully elaborated definition for each outcome domain, moving from an abstract or a vague concept to an operationalized and measurable health-related construct, so that a suitable measurement instrument can then be identified. Methods A series of 5 focus group–style semistructured discussions were conducted via a Web-based discussion forum, each open for 2 weeks and ending with a vote. The participants included 148 tinnitus experts who completed a preceding e-Delphi survey that had generated the original set of minimum standards. The participants were health care users living with tinnitus, health care professionals, clinical researchers, commercial representatives, and funders. Results The Web discussions led to a revision of all 5 original plain language definitions that had been used in the preceding e-Delphi survey. Each revised definition was voted by 8 to 53 participants and reached the prespecified threshold of 70% consensus for all except tinnitus intrusiveness. Although a single definition was not agreed upon for tinnitus intrusiveness, the majority of participants shared the view that the concept should be sufficiently broad to encapsulate a range of subdomains. The examples included tinnitus awareness, unpleasantness, and impact on different aspects of everyday life. Thematic analysis of the 5 Web-based discussion threads gave important insights into expert interpretations of each core outcome domain, generating an operationalized and measurable health construct in each case. Conclusions The qualitative data gathered during the Web-based discussion forum provided an important in-depth understanding of the health concepts that had raised a debate during earlier face-to-face meetings. The descriptive summaries and definitions provide sufficient operationalization of those concepts to proceed to the second stage of core outcome set development that is to identify and evaluate suitable measurement instruments. This study supports the use of Web-based peer discussion forums in defining health concepts.