Suggestions for Shaping Tinnitus Service Provision in Western Europe: Lessons from the COVID‐19 Pandemic

Background: Tinnitus severity has been exacerbated due to the COVID‐19 pandemic and those with tinnitus require additional support. Such support should be informed by patient preferences and needs. The objective of this study was to gather information from individuals with tinnitus living in Europe to inform stakeholders of the (i) support they needed in relation to changes associated with the COVID‐19 pandemic, and (ii) suggestions regarding tinnitus care for the future. Methods: A cross‐sectional mixed methods study design was used using closed and open‐ended questions via an online survey. Data was gathered from 710 adults experiencing tinnitus in Western Europe, with the majority living in The Netherlands, Belgium, and Sweden. Data were analysed using qualitative content analysis and descriptive statistics. Results: Those with tinnitus indicated the following support needs during the pandemic (a) support for tinnitus, (b) support for hearing‐related difficulties, (c) social support, and (d) pandemic‐related support. Five directions for future tinnitus care were provided, namely (a) need for understanding professional support and access to multidisciplinary experts, (b) greater range of therapies and resources, (c) access to more information about tinnitus, (d) prioritizing tinnitus research, and (e) more support for hearing protection and hearing loss prevention. Conclusions: The findings point to the need for accessible (remote), patient‐centred, suitable and evidence‐based tinnitus care. Insights from the current study can be used by various stakeholders including clinical practitioners and tinnitus support services to ensure those with tinnitus have access to the help and support required in order to reduce service provision insufficiencies

Readability following cultural and linguistic adaptations of an Internet-based Intervention for Tinnitus for use in the United States

Purpose: An Internet-based tinnitus intervention for use in the United States could improve the provision of tinnitus-related services. Although such interventions have undergone clinical trials in Europe, the UK, and Australia, their suitability for adults with tinnitus in the US has not been established. The aim of this study was to improve the cultural and linguistic suitability, and lower the readability level, of an existing program for tinnitus to ensure its suitability for US English-and Spanish-speaking populations. Method: Guidelines for cultural adaptation were followed and involved four phases: (i) cultural adaptations, as interventions targeted at specific cultures have been shown to improve outcomes; (ii) creating Spanish materials to improve access of the materials to the large Spanish-speaking population in the US; (iii) professional review of the materials for acceptability as an intervention tool for a US population; and (iv) literacy level adjustments to make the content accessible to those with lower levels of health literacy skills. Results: Cultural adaptations were made by using word substitutions, changing examples and modifying the spelling of certain words. The materials were then translated into Spanish and cross-checked. Professional review ensured suitability of the chapters. Literacy level adjustments ensured all chapters were within the guidelines for readability grade levels below the 6th-grade level. Conclusions: The previously developed tinnitus materials were revised to adhere to best practice guidelines and ensure cultural suitability for adults with tinnitus in the US. As it is also available in Spanish, members of the large Hispanic community also have access to the intervention in their first language. Further studies should determine whether these changes improve patients’ self-efficacy, engagement, and motivation to complete the intervention

Variants of OTOF and PJVK Genes in Chinese Patients with Auditory Neuropathy Spectrum Disorder

BACKGROUND: Mutations in OTOF and PJVK genes cause DFNB9 and DFNB59 types of hearing loss, respectively. The patients carrying pathogenic mutations in either of these genes may show the typical phenotype of auditory neuropathy spectrum disorder (ANSD). The aim of the present study was to identify OTOF and PJVK mutations in sporadic ANSD patients. METHODS AND FINDINGS: A total of 76 unrelated Chinese non-syndromic ANSD patients were sequenced on the gene OTOF and PJVK exon by exon. Variants were valued in 105 controls with normal hearing to verify the carrying rate. We identified one pathogenic mutation (c.1194T>A) and three novel, possibly pathogenic, variants (c.3570+2T>C, c.4023+1 G>A, and c.1102G>A) in the OTOF gene, and one novel, possibly pathogenic, variant (c.548G>A) in PJVK. Moreover, we found three novel missense mutations within the exons of OTOF. CONCLUSIONS: As we identified 4 and 1 possible pathogenic variants of the OTOF gene and the PJVK gene, respectively, we believe that screening in these genes are important in sporadic ANSD patients. The pathogenicity of these novel mutations needs further study because of their single heterozygous nature. Knowledge on the mutation spectra of these genes in Chinese would be beneficial in understanding the genetic character of this worldwide disease

Examination of previously published data to identify patterns in the social representation of 'hearing aids' across countries

Background and Objectives: Societal factors seem to exercise a strong influence on hearing aid uptake, use, and satisfaction. In particular, knowledge, perception, and attitude of people will have bearing towards their and others health behavior and decisions. The current study aimed at understanding the perception of hearing aids by adults belonging to the general population in different countries. Subjects and Methods: The study employed a crosssectional design. A sample of 404 adults from India, Iran, Portugal, and the United Kingdom were recruited by relying on a convenience sampling. Previously published data was re-analyzed but it was applied for different approach. Free association task was used to collect the data. They were asked to provide up to five words or phrases that come to mind when thinking about "hearing aids." The data was initially analyzed based on qualitative content analysis. This was followed by quantitative cluster analysis and chi square analysis. Results: The content analysis suggested 39 main categories of responses related to hearing aids. The cluster analysis resulted in five main clusters, namely: 1) positive attitude, 2) external factors, 3) hearing aid use and satisfaction, 4) etiology, and 5) benefits and limitations of technology. A few demographic factors (i.e., education, occupation type, country) showed association with different clusters, although country of origin seemed to be associated with most clusters. Conclusions: The study provides us with unique insights into the perception of hearing aids by the general public, and additionally, the way demographic variables may influence these perceptions. © 2018 The Korean Audiological Society and Korean Otological Society

Patterns in the social representation of “hearing loss” across countries: how do demographic factors influence this representation?

This study aims to understand patterns in the social representation of hearing loss reported by adults across different countries and explore the impact of different demographic factors on response patterns. The study used a cross-sectional survey design. Data were collected using a free association task and analysed using qualitative content analysis, cluster analysis and chi-square analysis. The study sample included 404 adults (18 years and over) in the general population from four countries (India, Iran, Portugal and UK). The cluster analysis included 380 responses out of 404 (94.06%) and resulted in five clusters. The clusters were named: (1) individual aspects; (2) aetiology; (3) the surrounding society; (4) limitations and (5) exposed. Various demographic factors (age, occupation type, education and country) showed an association with different clusters, although country of origin seemed to be associated with most clusters. The study results suggest that how hearing loss is represented in adults in general population varies and is mainly related to country of origin. These findings strengthen the argument about cross-cultural differences in perception of hearing loss, which calls for a need to make necessary accommodations while developing public health strategies about hearing loss. © 2018, © 2018 British Society of Audiology, International Society of Audiology, and Nordic Audiological Society. Published by Informa UK Limited, trading as Taylor & Francis Group

Patient-reported benefits from patient organization magazines and Internet-based peer support in Ménière’s disease

Vinaya Manchaiah,1–4 Ilmari Pyykkö,5 Jing Zou,5,6 Hilla Levo,7 Erna Kentala7 1Department of Speech and Hearing Sciences, Lamar University, Beaumont, TX, USA; 2Department of Behavioural Sciences and Learning, The Swedish Institute for Disability Research, Linköping University, Linköping, Sweden; 3Audiology India, Mysore, 4Department of Speech and Hearing, School of Allied Health Sciences, Manipal University, Manipal, Karnataka, India; 5Department of Otolaryngology, Hearing and Balance Research Unit, University of Tampere, Tampere, Finland; 6Department of Otolaryngology-Head and Neck Surgery, Center for Otolaryngology-Head & Neck Surgery of Chinese PLA, Changhai Hospital, Second Military Medical University, Shanghai, China; 7Department of Otolaryngology, University of Helsinki, Helsinki, Finland Objectives: To facilitate self-help, the Finnish Ménière’s Federation (FMF) provides various kinds of support to persons with Ménière’s disease (MD), which includes patient magazines (PM) and Internet-based peer support (iPS). The current study aimed to evaluate the benefits reported by MD patients in terms of PM and iPS.Method: The study used a cross-sectional survey design with a mixture of structured and open-ended questions administered online. A sample of 185 patients from the FMF membership database provided complete data.Results: Ninety-two percent of the respondents rated PM as useful, or very useful. The main benefits of PM included: information on the disease and complaints, information about elements of peer support program, patient’s experience with useful positive case studies, relevant news on MD, and information of activity of the FMF. Of the 185 persons, 68 reported that they did not have a need for peer support as their disease was either in silent phase or did not cause any annoyance. The main reasons for nonuse were: mild disease, personal reasons, and problems in using. Regarding the benefits of iPS, 75% of recent and 64% of chronic MD patients said that they would benefit from such a program. The main benefits of iPS included: reliable information on the disease and its management, peer support useful for coping with the disease, information about managing MD symptoms, information about managing attitude, and information about therapy. Moreover, the study identified different groups of individuals, which included: nonusers of support from patient organizations, those who used the support but did not feel they benefited, and those who used and also benefited from such programs.Conclusion: The current study results provide some information about the preferences of MD patients regarding different forms of support and could certainly prove helpful while developing wider support strategies. Keywords: Ménière’s disease, chronic condition, peer support, self-help, self-management&nbsp