Item Generation for a Music-related Quality of Life Questionnaire for Adult Cochlear Implant Users

Introduction: Existing music questionnaires designed for adult cochlear implant (CI) users are limited in their ability to measure real-world benefits of auditory music training and new technologies. Aims: To investigate aspects of CI users’ relationship with music that are relevant to quality of life (QoL) domains, with a view to generating items for a new questionnaire. Methods: Thirty adult CI users participated in 1 of 6 focus groups about music in everyday life. The group discussion data were analyzed based on the theory of template analysis. The QoL domains of the Nijmegen Cochlear Implant Questionnaire were used as broad a priori categories to help with organizing associated themes. Participants also evaluated items of existing questionnaires. Results: The themes identified in the discussion were organized into three main domains (music listening ability, attitude towards music, musical activity), which constitute the music-related quality of life (MuRQoL) of CI users. Fifty-three items were developed for a prototype questionnaire using a combination of these themes and items from existing questionnaires highly rated by participants. Conclusion: The study highlights musical abilities, attitudes and activities of adult CI users poorly addressed or not addressed at all by previous questionnaires. By covering novel aspects of music experience, the MuRQoL questionnaire has the potential to be a more suitable measure of music-specific CI outcomes than previous questionnaires, which may open up new avenues for the assessment and provision of music rehabilitation in clinical settings. The MuRQoL questionnaire was optimized and validated in another study before becoming available for use

A Data-informed Public Health Policy-Makers Platform

Hearing loss is a disease exhibiting a growing trend due to the number of factors, including but not limited to the mundane exposure to the noise and ever-increasing amount of older population. In the framework of a public health policymaking process, modeling of the hearing loss disease based on data is a key factor in alleviating the issues related to the disease issuing effective public health policies. First, the paper describes the steps of the data-driven policymaking process. Afterward, a scenario along with the part of the proposed platform, responsible for supporting policymaking are presented. With the aim of demonstrating the capabilities and usability of the platform for the policy-makers, some initial results of preliminary analytics are presented in a framework of a policy-making process. Ultimately, the utility of the approach is validated throughout the results of the survey which was presented to the health system policy-makers professionals involved in the policy development process in Croatia

Experiences of Patients With Auditory Processing Disorder in Getting Support in Health, Education, and Work Settings: Findings From an Online Survey

OBJECTIVE: To explore the views and experiences of individuals with Auditory Processing Disorder (APD) and/or their families in getting support from services and to receive their suggestions for improvement. DESIGN: Cross-sectional random sample survey with descriptive analysis. SETTINGS: Online survey. PARTICIPANTS: One hundred and fifty six individuals with APD and/or their family members from the APD Support UK patient support organization and four associated APD Facebook groups. MAIN OUTCOME MEASURE: A 16-item questionnaire on negative and positive experiences in getting a referral for diagnosis, funding for the FM system, and overall support for APD. RESULTS: The key findings that emerged included reports of difficulty in getting a referral for diagnosis (54%), obtaining funding for an FM system (45%), getting support for APD (61%), and poor recognition and awareness of APD (63%) in Education, Health or Work settings. The positive experiences reported were ease in getting a referral for diagnosis (46%), in obtaining an FM system (20%), and with diagnosis leading to help at school or to a better understanding of the condition and the required adjustments. The recommended improvement areas were raising awareness of APD and related management in Education (30%), the Health sector (25%), and the public (18%). CONCLUSIONS: Individuals and families of individuals with APD overwhelmingly report a lack of awareness of APD across health, education, and work sectors, and difficulties in getting access to diagnosis and support. This information may provide an initial understanding of the patients' needs for clinical services for APD, identify research priorities, and influence longer-term public health decisions toward improved care

A Music-Related Quality of Life measure to guide music rehabilitation for adult CI users

Purpose: A music-related quality of life (MuRQoL) questionnaire was developed for the evaluation of music rehabilitation for adult cochlear implant (CI) users. The present studies were aimed at refinement and validation. Method: Twenty-four experts reviewed the MuRQoL items for face validity. A refined version was completed by 147 adult CI users and psychometric techniques were used for item selection, assessment of reliability and definition of the factor structure. The same participants completed the Short Form Health Survey for construct validation. MuRQoL responses from 68 CI users were compared with those of a matched group of normal-hearing (NH) adults. Results: Eighteen items measuring music perception & engagement and 18 items measuring their importance were selected; they grouped together into two domains. The final questionnaire has high internal consistency and repeatability. Significant differences between CI users and NH adults and a correlation between music engagement and quality of life (QoL) support construct validity. Scores of music perception & engagement and importance for the 18 items can be combined to assess the impact of music on the QoL. Conclusion: The MuRQoL questionnaire is a reliable and valid measure of self-reported music perception, engagement and their importance for adult CI users with potential to guide music aural rehabilitation

Relationships between hearing loss and hearing aid usage in real world

Many hearing aids are fitted with multiple programs that the user can choose between in different situations. In the H2020 EVOTION project hundreds of hearing aid users were fitted according to their audiogram with Oticon VAC rationale with four adaptive programs that differed in the noise management profile. The programs differed on how much the noise was attenuated and the threshold at which the device started to remove noise. The hearing aids also transmitted continuous data about the sound environment and the operation of the hearing aid to a dedicated app on a smartphone. The participants had a wide range of hearing losses and was recruited from amongst new and experienced hearing aid users in six different clinics in UK, Greece, and Denmark. The data from the hearing aid users was collected for up to a year to investigate relationships between clinical factors and usage patterns. The data enables a detailed investigation of the complexity of sound environments throughout the day, relation between complexity as function of time to the clinical factors including and beyond the audiogram

Impact of music on the quality of life of cochlear implant users: a focus group study

OBJECTIVE: To study the aspects of the quality of life (QoL) on which music has an impact in adult cochlear implant (CI) users. METHODS: Thirty adult CI users aged between 18 and 81 years old with a wide range of patient characteristics and musical backgrounds participated in the study. Six focus group discussions about music in everyday life were conducted and data were analysed using template analysis based on the QoL model of the World Health Organisation Quality of Life BREF questionnaire. RESULTS AND DISCUSSION: A theoretical framework of the impact of music on the QoL was developed. Music was reported to contribute to many aspects of physical, psychological, and social well-being in adult CI users. These positive effects of music on QoL were similar to what has been reported in the literature for normal-hearing adults. However, difficulties in music perception and enjoyment were found to have a negative impact on CI users' QoL, especially by causing unpleasant feelings and limited participation in music-related or routine daily activities. CONCLUSIONS: These findings suggest that an improvement in music experiences of CI users may lead to improvements in QoL and therefore support the need for music rehabilitation. However, the relative importance of music overall and of specific aspects of music for each individual should be measured for an accurate assessment of the impact of music on the QoL of CI users

Public health policy-making for hearing loss: stakeholders' evaluation of a novel eHealth tool

Background: Hearing loss (HL) affects 466 million people of all ages worldwide, with a rapidly increasing prevalence, and therefore requires appropriate public health policies. Multi-disciplinary approaches that make use of eHealth services can build the evidence to influence public policy. The European Union-funded project EVOTION developed a platform that is fed with real-time data from hearing aids, a smartphone, and additional clinical data and makes public health policy recommendations based on hypothetical public health policy-making models, a big data engine and decision support system. The present study aimed to evaluate this platform as a new tool to support policy-making for HL. / Methods: A total of 23 key stakeholders in the United Kingdom, Croatia, Bulgaria and Poland evaluated the platform according to the Strengths, Weaknesses, Opportunities and Threats methodology. / Results: There was consensus that the platform, with its advanced technology as well as the amount and variety of data that it can collect, has huge potential to inform commissioning decisions, public health regulations and affect healthcare as a whole. To achieve this, several limitations and external risks need to be addressed and mitigated. Differences between countries highlighted that the EVOTION tool should be used and managed according to local constraints to maximise success. / Conclusion: Overall, the EVOTION platform can equip HL policy-makers with a novel data-driven tool that can support public health policy-making for HL in the future

Clinical validation of a public health policy-making platform for hearing loss (EVOTION): protocol for a big data study

INTRODUCTION: The holistic management of hearing loss (HL) requires an understanding of factors that predict hearing aid (HA) use and benefit beyond the acoustics of listening environments. Although several predictors have been identified, no study has explored the role of audiological, cognitive, behavioural and physiological data nor has any study collected real-time HA data. This study will collect ‘big data’, including retrospective HA logging data, prospective clinical data and real-time data via smart HAs, a mobile application and biosensors. The main objective is to enable the validation of the EVOTION platform as a public health policy-making tool for HL. METHODS AND ANALYSIS: This will be a big data international multicentre study consisting of retrospective and prospective data collection. Existing data from approximately 35 000 HA users will be extracted from clinical repositories in the UK and Denmark. For the prospective data collection, 1260 HA candidates will be recruited across four clinics in the UK and Greece. Participants will complete a battery of audiological and other assessments (measures of patient-reported HA benefit, mood, cognition, quality of life). Patients will be offered smart HAs and a mobile phone application and a subset will also be given wearable biosensors, to enable the collection of dynamic real-life HA usage data. Big data analytics will be used to detect correlations between contextualised HA usage and effectiveness, and different factors and comorbidities affecting HL, with a view to informing public health decision-making. ETHICS AND DISSEMINATION: Ethical approval was received from the London South East Research Ethics Committee (17/LO/0789), the Hippokrateion Hospital Ethics Committee (1847) and the Athens Medical Center’s Ethics Committee (KM140670). Results will be disseminated through national and international events in Greece and the UK, scientific journals, newsletters, magazines and social media. Target audiences include HA users, clinicians, policy-makers and the general public. TRIAL REGISTRATION NUMBER: NCT03316287; Pre-results

The effect of spectral smearing on the identification of pure F 0 intonation contours in vocoder simulations of cochlear implants

Theoretical and Experimental Linguistic

Involving Children and Teenagers With Bilateral Cochlear Implants in the Design of the BEARS (Both EARS) Virtual Reality Training Suite Improves Personalization

Older children and teenagers with bilateral cochlear implants often have poor spatial hearing because they cannot fuse sounds from the two ears. This deficit jeopardizes speech and language development, education, and social well-being. The lack of protocols for fitting bilateral cochlear implants and resources for spatial-hearing training contribute to these difficulties. Spatial hearing develops with bilateral experience. A large body of research demonstrates that sound localisation can improve with training, underpinned by plasticity-driven changes in the auditory pathways. Generalizing training to non-trained auditory skills is best achieved by using a multi-modal (audio-visual) implementation and multi-domain training tasks (localisation, speech-in-noise, and spatial music). The goal of this work was to develop a package of virtual-reality games (BEARS, Both EARS) to train spatial hearing in young people (8–16 years) with bilateral cochlear implants using an action-research protocol. The action research protocol used formalized cycles for participants to trial aspects of the BEARS suite, reflect on their experiences, and in turn inform changes in the game implementations. This participatory design used the stakeholder participants as co-creators. The cycles for each of the three domains (localisation, spatial speech-in-noise, and spatial music) were customized to focus on the elements that the stakeholder participants considered important. The participants agreed that the final games were appropriate and ready to be used by patients. The main areas of modification were: the variety of immersive scenarios to cover age range and interests, the number of levels of complexity to ensure small improvements were measurable, feedback, and reward schemes to ensure positive reinforcement, and an additional implementation on an iPad for those who had difficulties with the headsets due to age or balance issues. The effectiveness of the BEARS training suite will be evaluated in a large-scale clinical trial to determine if using the games lead to improvements in speech-in-noise, quality of life, perceived benefit, and cost utility. Such interventions allow patients to take control of their own management reducing the reliance on outpatient-based rehabilitation. For young people, a virtual-reality implementation is more engaging than traditional rehabilitation methods, and the participatory design used here has ensured that the BEARS games are relevant