Patient and public involvement and engagement (PPIE): how valuable and how hard? An evaluation of ALL_EARS@UoS PPIE group, 18 months on.

BACKGROUND: ALL_EARS@UoS is a patient and public involvement and engagement (PPIE) group for people with lived experience of hearing loss. The purpose of the group is to share experiences of hearing loss and hearing healthcare, inform research and improve services for patients at University of Southampton Auditory Implant Service. A year after inception, we wanted to critically reflect on the value and challenges of the group. Four members of ALL_EARS@UoS were recruited to an evaluation steering group. This paper reports the evaluation of the group using the UK Standards for Public Involvement. METHODS: An anonymous, mixed-methods questionnaire was co-designed and shared with members of ALL_EARS@UoS using an online platform. The questionnaire was designed to capture satisfaction, individual feedback through free-text answers, and demographic information. Descriptive statistics have been used to express the satisfaction and demographic data. Reflexive thematic analysis has been used to analyse the free-text responses. Group engagement and activity data over time were monitored and collected. RESULTS: The questionnaire response rate was 61% (11/18). Areas identified as strengths were 'Communication' and 'Working together'. Five themes were developed from the thematic analysis; (1) Increased knowledge and awareness around the topic of hearing health for group members and wider society, (2) supporting research, (3) inclusivity within the group, (4) opportunity to make a difference for people in the future and (5) running of the group/group organisation. The data highlighted the value and challenges of PPIE. Members described feeling listened to and appreciation of being able to share experiences. Time of day and meeting format were identified as challenges as they affected who could attend the meetings. The ability to secure and maintain sufficient funding and time to support inclusive and diverse PPIE activities is a challenge for researchers. CONCLUSIONS: We have identified how PPIE added value to both group members and researchers, emphasising the true benefit of PPIE. We have highlighted challenges we are facing and our plan to tackle these. We aim to continue to develop and sustain a group that reflects the diversity of the Deaf/deaf or hard of hearing community and of our local community.

Leveraging real-world data to improve cochlear implant outcomes: Is the data available?

OBJECTIVES: A small but persistent proportion of individuals do not gain the expected benefit from cochlear implants(CI). A step-change in the understanding of factors affecting outcomes could come through data science. This study evaluates clinical data capture to assess the quality and utility of CI user's health records for data science, by assessing the recording of otitis media. Otitis media was selected as it is associated with the development of sensorineural hearing loss and may affect cochlear implant outcomes. METHODS: A retrospective service improvement project evaluating the medical records of 594 people with a CI under the care of the University of Southampton Auditory Implant Service between 2014 and 2020. RESULTS: The clinical records are suitable for data science research. Of the cohort studied 20% of Adults and more than 40% of the paediatric cases have a history of middle ear inflammation. DISCUSSION: Data science has potential to improve cochlear implant outcomes and improve understanding of the mechanisms underlying poor performance, through retrospective secondary analysis of real-world data. CONCLUSION: Implant centres and the British Cochlear Implant Group National Hearing Implant Registry are urged to consider the importance of consistently and accurate recording of patient data over time for each CI user. Data where links to hearing loss have been identified, such as middle ear inflammation, may be particularly valuable in future analyses and to inform clinical trials.

Inflammation at the Tissue-Electrode Interface in a Case of Rapid Deterioration in Hearing Performance Leading to Explant After Cochlear Implantation.

OBJECTIVE: The reasons for soft failure after cochlear implantation require investigation. This study proposes a method to study and characterize the tissue response to the array in a case of soft failure in a person undergoing reimplantation. CASE: The woman in her 50s, with an underlying autoimmune condition, received a cochlear implant using hearing preservation technique after developing profound hearing loss more than 2 kHz with a moderate loss of less than 500 Hz over a 10-year period. The case was identified as a soft failure due to deteriorating performance, discomfort, and migration over the 10 months after implantation. Impedance telemetry, speech perception measures, and audiometric thresholds are described. At explantation there was evidence of fibrosis. INTERVENTIONS: To use histology and immunohistochemistry to determine the cellular response of the tissue associated with the electrode array at time of explantation. MAIN OUTCOME MEASURES: Identification of the cell types, regional variations, and inflammatory marker expression in the fibrotic tissue associated with the array. RESULTS: Neutrophils and eosinophils were identified, along with a variable pattern of collagen deposition. CD68 and CD163-positive macrophages and T cells were variably distributed through the tissue and interleukin-1 beta and vascular endothelial growth factor receptor-2 expression was identified. CONCLUSIONS: The expression profile is evidence of active inflammation in the tissue despite the time since implantation. This study is the first to characterize the tissue response to the array in a person undergoing reimplantation, and who can be followed to determine the individual response to arrays. It establishes that the investigation of explanted devices after soft-failure is feasible.

Piloting the recording of electrode voltages (REVS) using surface electrodes as a test to identify cochlear implant electrode migration, extra-cochlear electrodes and basal electrodes causing discomfort.

OBJECTIVES: To determine if Electrode Voltage (EV) measurements are potentially suitable as a test for detecting extra-cochlear electrodes in cochlear implants (CIs). METHODS: EV measurements were made using surface electrodes in live mode in 17 adult cochlear implant (CI) users. Repeatability, the effects of stimulation level, CI active electrode position, (active) recording electrode position and stimulation mode (for Nucleus devices) were investigated. RESULTS/DISCUSSION: Recordings made in monopolar mode showed good repeatability when the active recording electrode was placed on the ipsilateral earlobe; voltages increased linearly with stimulation level as expected. EVs for basal electrodes differed greatly between partially inserted/migrated devices, fully inserted devices with all electrodes activated, and those with deactivated basal electrodes [χ2(2) = 10.2, p < 0.05 for the most basal electrode]. EVs for Nucleus devices were small for electrodes on the array when compared to those for monopolar return electrodes, except for the participant with extra-cochlear electrodes. We argue that fibrosis around the electrode array facilitated current flow across the round window in this case. CONCLUSION: The test appears to be a viable approach to detect electrode migration and extra-cochlear electrodes in adult CI users and may also be sensitive to discomfort caused by current leakage from the basal end of the cochlea.

Factors Affecting Speech Perception Improvement Post Implantation in Congenitally Deaf Adults.

OBJECTIVES: To identify factors preimplantation associated with postimplantation speech perception improvement in the adult congenitally deaf population. DESIGN: Forty-four adult cochlear implant (CI) patients who had a severe to profound hearing loss from birth were identified from this centre's database. Eight preimplantation factors, speech intelligibility, preimplantation hearing levels, communication mode, preimplantation speech perception scores, progression of hearing loss, age at implantation, hearing aid use preimplantation, and gender, were recorded during the CI assessment process. These factors were investigated to determine their effect on speech perception improvement postimplantation. The outcome measures were the improvement in scores for the BKB Sentence test and CUNY Sentence test with lipreading after implantation. In the final analysis, 26 patients were included in the CUNY analysis, and 30 patients were included in the BKB analysis. RESULTS: Speech intelligibility rating, preimplantation hearing levels, and communication mode were shown to be significantly associated with improvements in speech perception postimplantation. CONCLUSION: Three factors were identified that affected speech perception improvement postimplantation: speech intelligibility, preimplantation hearing levels, and communication mode. These factors can be used to counsel CI patients regarding potential speech perception improvements from cochlear implantation, although these are based on average data and may not reflect individual performance.

Participatory design of a music aural rehabilitation programme.

OBJECTIVES: Many cochlear implant (CI) users wish to enjoy music but are dissatisfied by its quality as perceived through their implant. Although there is evidence to suggest that training can improve CI users' perception and appraisal of music, availability of interactive music-based aural rehabilitation for adults is limited. In response to this need, an 'Interactive Music Awareness Programme' (IMAP) was developed with and for adult CI users. METHODS: An iterative design and evaluation approach was used. The process began with identification of user needs through consultations, followed by use of mock-up applications in workshops. Feedback from these were used to develop the prototype IMAP; a programme of 24 interactive sessions, enabling users to create and manipulate music. The prototype IMAP was subsequently evaluated in a home trial with 16 adult CI users over a period of 12 weeks. RESULTS: Overall ratings for the prototype IMAP were positive and indicated that it met users' needs. Quantitative and qualitative feedback on the sessions and software in the prototype IMAP were used to identify aspects of the programme that worked well and aspects that required improvement. The IMAP was further developed in response to users' feedback and is freely available online. CONCLUSIONS: The participatory design approach used in developing the IMAP was fundamental in ensuring its relevance, and regular feedback from end users in each phase of development proved valuable for early identification of issues. Observations and feedback from end users supported a holistic approach to music aural rehabilitation.

Perception of the pitch and naturalness of popular music by cochlear implant users.

OBJECTIVES: To assess the perceived pitch and naturalness of popular music by cochlear implant (CI) users. METHODS: Eleven experienced post-lingually deafened adult CI users rated the pitch, naturalness, and clarity of a popular song with 10 frequency allocation settings, including the default. The alternative settings all had logarithmic frequency spacing and frequency shifts of less than one octave compared with the default map. For maps which were perceived as having incorrect pitch, participants adjusted the pitch of the song in real time using a slider, in order to normalize it, and the amount of adjustment was recorded. RESULTS: The default map was rated as having close to correct pitch. Naturalness rating was negatively correlated with basal shift from a baseline logarithmic map, which was the same as the default map for basal electrodes (R(2) = 0.77). Ratings of the clarity of the lyrics were adversely affected by basal shift. The majority of participants were able to rate and adjust pitch appropriately. The frequency shift in the map was highly correlated with participants' adjustments of the pitch slider (R(2) = 0.94), but the adjustments were less than expected for the majority of participants. DISCUSSION: The pitch ratings for the default allocation suggest that participants have acclimatized to their processors' frequency allocations. Adjustment of the pitch of the song was possible for the majority and suggested that all but one participant was experiencing frequency compression. Expansion of the frequency allocation might help to alleviate this. CONCLUSION: Adjustment of the pitch of a popular song could be helpful for tuning CIs.

Optimizing frequency-to-electrode allocation for individual cochlear implant users.

Individual adjustment of frequency-to-electrode assignment in cochlear implants (CIs) may potentially improve speech perception outcomes. Twelve adult CI users were recruited for an experiment, in which frequency maps were adjusted using insertion angles estimated from post-operative x rays; results were analyzed for ten participants with good quality x rays. The allocations were a mapping to the Greenwood function, a compressed map limited to the area containing spiral ganglion (SG) cells, a reduced frequency range map (RFR), and participants' clinical maps. A trial period of at least six weeks was given for the clinical, Greenwood, and SG maps although participants could return to their clinical map if they wished. Performance with the Greenwood map was poor for both sentence and vowel perception and correlated with insertion angle; performance with the SG map was poorer than for the clinical map. The RFR map was significantly better than the clinical map for three participants, for sentence perception, but worse for three others. Those with improved performance had relatively deep insertions and poor electrode discrimination ability for apical electrodes. The results suggest that CI performance could be improved by adjustment of the frequency allocation, based on a measure of insertion angle and/or electrode discrimination ability.

Aural rehabilitation through music workshops for cochlear implant users.

BACKGROUND: It has been reported that after speech perception, music appreciation is the second most commonly expressed requirement among cochlear implant (CI) recipients. Certain features of music are known to be more readily accessible; however, provision of music rehabilitation for adult CI users is limited. PURPOSE: A series of music workshops were organized to (1) enable attendees to explore which aspects of music they are able to perceive and appreciate; (2) raise awareness of listening strategies, technology, and rehabilitation resources for music; and (3) develop ideas, and prototype software, for inclusion in a music rehabilitation program. The therapeutic value of music workshops was concurrently investigated. RESEARCH DESIGN: A qualitative, longitudinal study was used. Two consultation meetings were held before a series of nine music workshops that occurred over a period of 5 mo. STUDY SAMPLE: Five adult CI users participated in consultations before the workshops. Twenty-eight adult CI users from the South of England Cochlear Implant Centre attended at least one of the workshops. INTERVENTION: Participants could attend as many workshops as they wished. Each workshop lasted between 2 to 2.5 hr and included individual computer-based and group activities. DATA COLLECTION AND ANALYSIS: Responses to open-ended questions were transcribed in the consultation meetings and used to develop workshop activities. A preworkshop survey was used to determine attendees' aspirations and expectations. Postworkshop surveys were used to qualitatively and quantitatively evaluate attendees' immediate reactions to the workshop content, software, and perceived benefits. A 2-month, postworkshop survey evaluated the longer-term impact of the workshops. RESULTS: Overall reaction to the workshops and prototype software was positive. All attendees indicated that they anticipated changing how they engaged with music as a result of the workshops, and data from the preworkshop and postworkshop surveys suggest a positive change in listening habits. CONCLUSIONS: The workshops proved to be an effective means of simultaneously encouraging music exploration in a social and safe environment and obtaining feedback on prototype rehabilitation materials. Survey data suggested that through group listening and practical activities, certain aspects of music can be accessible and rewarding through a CI, leading to positive changes in attitude and behavior toward music.

The MuSIC perception test: a novel battery for testing music perception of cochlear implant users.

This study was undertaken to evaluate the musical sounds in cochlear implants (MuSIC) perception test, created to assess the music-listening abilities of cochlear implant (CI) users. Thirty-one unilateral MED-EL COMBI 40+/PULSARCI(100) users and a control group of 67 adults with normal hearing (NH) participated. The MuSIC test comprises six objective and two subjective modules employing approximately 2800 musical files recorded from non-synthesized instruments. A subset was used for comparing CI and NH participants' results. CI and NH participants performed significantly differently on: pitch discrimination, melody discrimination, chord discrimination, instrument detection, and instrument identification. No significant difference in performance was seen on the subtests of rhythm discrimination or dissonance rating and emotion rating. The MuSIC test was found to be a valuable tool for assessing music perception in CI users and NH participants, whether investigating one aspect of music perception in depth or conducting a broad survey of music perception.

Music activities and responses of young cochlear implant recipients.

OBJECTIVE: The development of auditory receptive skills and spoken language is often delayed in children who use cochlear implants, which may affect their appreciation of and responses to music. This in turn may be interpreted as disinterest in music. A questionnaire was developed to determine whether differences in exposure and responses to music exist between young cochlear implant recipients and their normally hearing peers. DESIGN: The questionnaire was developed by a multidisciplinary team and distributed to parents of preschool children with normal hearing and to parents of preschool children who had been implanted at least one year prior. STUDY SAMPLE: The cochlear implant group comprised 23 children and was gender and age matched (within ±2 months) to a group of children with normal hearing. RESULTS & CONCLUSIONS: Young cochlear implant recipients receive similar exposure to audiovisual music media, parental singing and musical instruments at home. However, the data suggest that they receive less exposure to children's music presented without visual stimuli. Parents also reported less sophisticated responses to music for this group. The findings of this study have important implications concerning the provision of age-appropriate music habilitation materials and activities for young cochlear implant recipients.

Comparison of musical activities of cochlear implant users with different speech-coding strategies.

Speech coding might have an impact on music perception of cochlear implant users. This questionnaire study compares the musical activities and perception of postlingually deafened cochlear implant users with three different coding strategies (CIS, ACE, SPEAK) using the Munich Music Questionnaire. Overall, the self-reported perception of music of CIS, SPEAK, and ACE users did not differ by very much.