Dataset Information

Use of Adult Patient Focus Groups to Develop the Initial Item Bank for a Cochlear Implant Quality-of-Life Instrument.

ABSTRACT:

Importance

No instrument exists to assess quality of life (QOL) in adult cochlear implant (CI) users that has been developed and validated using accepted scientific standards.

Objective

To develop a CI-specific QOL instrument for adults in accordance with the Patient Reported Outcomes Measurement Information System (PROMIS) guidelines.

Design, setting, and participants

As required in the PROMIS guidelines, patient focus groups participated in creation of the initial item bank. Twenty-three adult CI users were divided into 1 of 3 focus groups stratified by word recognition ability. Three moderator-led focus groups were conducted based on grounded theory on December 3, 2016. Two reviewers independently analyzed focus group recordings and transcripts, with a third reviewer available to resolve discrepancies. All data were reviewed and reported according to the Consolidated Criteria for Reporting Qualitative Research. The setting was a tertiary referral center.

Main outcomes and measures

Coded focus group data.

Results

The 23 focus group participants (10 [43%] female; mean [range] age, 68.1 [46.2-84.2] years) represented a wide range of income levels, education levels, listening modalities, CI device manufacturers, duration of CI use, and age at implantation. Data saturation was determined to be reached before the conclusion of each of the focus groups. After analysis of the transcripts, the central themes identified were communication, emotion, environmental sounds, independence and work function, listening effort, social isolation and ability to socialize, and sound clarity. Cognitive interviews were carried out on 20 adult CI patients who did not participate in the focus groups to ensure item clarity. Based on these results, the initial QOL item bank and prototype were developed.

Conclusions and relevance

Patient focus groups drawn from the target population are the preferred method of identifying content areas and domains for developing the item bank for a CI-specific QOL instrument. Compared with previously used methods, the use of patient-centered item development for a CI-specific QOL instrument will more accurately reflect patient experience and increase our understanding of how CI use affects QOL.

SUBMITTER: McRackan TR

PROVIDER: S-EPMC5710256 | biostudies-literature | 2017 Oct

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Use of Adult Patient Focus Groups to Develop the Initial Item Bank for a Cochlear Implant Quality-of-Life Instrument.

McRackan Theodore R TR Velozo Craig A CA Holcomb Meredith A MA Camposeo Elizabeth L EL Hatch Jonathan L JL Meyer Ted A TA Lambert Paul R PR Melvin Cathy L CL Dubno Judy R JR

JAMA otolaryngology-- head & neck surgery 20171001 10

<h4>Importance</h4>No instrument exists to assess quality of life (QOL) in adult cochlear implant (CI) users that has been developed and validated using accepted scientific standards.<h4>Objective</h4>To develop a CI-specific QOL instrument for adults in accordance with the Patient Reported Outcomes Measurement Information System (PROMIS) guidelines.<h4>Design, setting, and participants</h4>As required in the PROMIS guidelines, patient focus groups participated in creation of the initial item ba ...[more]

PMID: 28772297

Similar Datasets

Project description:OBJECTIVES:Functional outcomes following cochlear implantation have traditionally been focused on word and sentence recognition, which, although important, do not capture the varied communication and other experiences of adult cochlear implant (CI) users. Although the inadequacies of speech recognition to quantify CI user benefits are widely acknowledged, rarely have adult CI user outcomes been comprehensively assessed beyond these conventional measures. An important limitation in addressing this knowledge gap is that patient-reported outcome measures have not been developed and validated in adult CI patients using rigorous scientific methods. The purpose of the present study is to build on our previous work and create an item bank that can be used to develop new patient-reported outcome measures that assess CI quality of life (QOL) in the adult CI population. DESIGN:An online questionnaire was made available to 500 adult CI users who represented the adult CI population and were recruited through a consortium of 20 CI centers in the United States. The questionnaire included the 101 question CIQOL item pool and additional questions related to demographics, hearing and CI history, and speech recognition scores. In accordance with the Patient-Reported Outcomes Measurement Information System, responses were psychometrically analyzed using confirmatory factor analysis and item response theory. RESULTS:Of the 500 questionnaires sent, 371 (74.2%) subjects completed the questionnaire. Subjects represented the full range of age, durations of CI use, speech recognition abilities, and listening modalities of the adult CI population; subjects were implanted with each of the three CI manufacturers' devices. The initial item pool consisted of the following domain constructs: communication, emotional, entertainment, environment, independence, listening effort, and social. Through psychometric analysis, after removing locally dependent and misfitting items, all of the domains were found to have sound psychometric properties, with the exception of the independence domain. This resulted in a final CIQOL item bank of 81 items in 6 domains with good psychometric properties. CONCLUSIONS:Our findings reveal that hypothesis-driven quantitative analyses result in a psychometrically sound CIQOL item bank, organized into unique domains comprised of independent items which measure the full ability range of the adult CI population. The final item bank will now be used to develop new instruments that evaluate and differentiate adult CIQOL across the patient ability spectrum.

Project description:ImportancePrevious research suggests that clinicians view realistic patient expectations as the most important nonaudiological factor in the decision to proceed with a cochlear implant (CI). However, clinicians have few data to determine whether patients' outcome expectations are realistic.ObjectiveTo address this unmet clinical need through the development and psychometric analysis of a new patient-reported outcome measure, the CI Quality of Life (CIQOL) Expectations.Design, setting, and participantsThis cross-sectional study was conducted at a tertiary CI center from February 26, 2020, to August 31, 2021. First, a team comprising 2 CI audiologists, a CI surgeon, a hearing scientist, and 2 psychometricians with experience in instrument development converted all items from the CIQOL-35 Profile instrument into statements reflecting expected outcomes. Then, cognitive interviews with 20 potential CI users assessed the clarity and comprehensiveness of the new instrument. Next, responses to the CIQOL-Expectations instrument for 131 potential adult CI candidates were psychometrically analyzed using confirmatory factor analysis and item response theory. Finally, degree to which patient expectations changed from before to after and their CI evaluation appointments was measured.InterventionThe CIQOL-Expectations instrument.ResultsOf 178 participants, 85 (47.8%) were female, and there was 1 (0.6%) Asian, 26 (14.6%) Black or African American, 1 (0.6%) Latinx, and 150 (84.3%) White individuals. No major content or grammar changes were identified during the cognitive interviews. Overall, all CIQOL domains demonstrated adequate to strong psychometric properties. Several domains did not meet all a priori established indicators of model fit or ability to separate CI users based on response patterns, but all met most indicators. Potential CI users demonstrated the highest mean (SD) expectation scores for the environment (70.2 [20.8]) and social (68.4 [18.0]) domains. In addition, the entertainment (20 [15.3%]) and environment (31 [24.4%]) domains had the highest percentage of patients with expectation scores of 100. Yet, normative CIQOL-35 Profile data from experienced CI users suggested few patients obtain this high degree of functional benefit after implant.Conclusions and relevanceThe results of this cross-sectional study suggest that the CIQOL-Expectations instrument may provide an opportunity to assess potential CI users' expected outcomes using modification of an established CIQOL instrument and a patient-centered framework. The included items and domains reflect real-world functional abilities valued by CI users and may provide opportunities for an evidence-based shared decision-making approach to the CI evaluation process. With this instrument, clinicians can compare individual patients' pre-CI outcome expectations with established normative data and provide appropriate counseling.

Project description:BACKGROUND:Current measures used to determine sentence recognition abilities in cochlear implant recipients often include tests with one talker and one rate of speech. Performance with these measures may not accurately represent the speech recognition abilities of the listeners. Evaluation of cochlear implant performance should include measures that reflect realistic listening conditions. For example, the use of multiple talkers who vary in gender, rate of speech, and regional dialects represent varied communication interactions that people encounter daily. The TIMIT sentences, which use multiple talkers and incorporate these variations, provide additional test material for evaluating speech recognition. Dorman and colleagues created 34 lists of TIMIT sentences that were normalized for equal intelligibility using simulations of cochlear implant processing with normal-hearing listeners. Adults with sensorineural hearing loss who listen with cochlear implants represent a different population. Further study is needed to determine if these lists are equivalent for adult cochlear implant recipients and, if not, to identify a subset of lists that may be used with this population. PURPOSE:To evaluate the speech recognition equivalence of 34 TIMIT sentence lists with adult cochlear implant recipients. RESEARCH DESIGN:A prospective study comparing test-retest results within the same group of listeners. STUDY SAMPLE:Twenty-two adult cochlear implant recipients who met the inclusion criteria of at least 3 mo device use and a monosyllabic word score of 30% or greater participated in the study. DATA COLLECTION AND ANALYSIS:Participants were administered 34 TIMIT sentence lists (20 sentences per list) at each of two test sessions several months apart. List order was randomized and results scored as percent of words correct. Test-retest correlations and 95% confidence intervals for the means were used to identify equivalent lists with high test-retest reliability. RESULTS:Mean list scores across participants ranged from 66 to 81% with an overall mean of 73%. Twenty-nine lists had high test-retest reliability. Using the overall mean as a benchmark, the 95% confidence intervals indicated that 25 of the remaining 29 lists were equivalent (e.g., the benchmark of 73% fell within the 95% confidence interval for both test and retest). CONCLUSIONS:Twenty-five of the TIMIT lists evaluated are equivalent when used with adult cochlear implant recipients who have open-set word recognition abilities. These lists may prove valuable for monitoring progress, comparing listening conditions or treatments, and developing aural rehabilitation plans for cochlear implant recipients.

Project description:ObjectiveThis paper reports a noninvasive method for quantifying neural synchrony in the cochlear nerve (i.e., peripheral neural synchrony) in cochlear implant (CI) users, which allows for evaluating this physiological phenomenon in human CI users for the first time in the literature. In addition, this study assessed how peripheral neural synchrony was correlated with temporal resolution acuity and speech perception outcomes measured in quiet and in noise in post-lingually deafened adult CI users. It tested the hypothesis that peripheral neural synchrony was an important factor for temporal resolution acuity and speech perception outcomes in noise in post-lingually deafened adult CI users.DesignStudy participants included 24 post-lingually deafened adult CI users with a Cochlear™ Nucleus® device. Three study participants were implanted bilaterally, and each ear was tested separately. For each of the 27 implanted ears tested in this study, 400 sweeps of the electrically evoked compound action potential (eCAP) were measured at four electrode locations across the electrode array. Peripheral neural synchrony was quantified at each electrode location using the phase locking value (PLV), which is a measure of trial-by-trial phase coherence among eCAP sweeps/trials. Temporal resolution acuity was evaluated by measuring the within-channel gap detection threshold (GDT) using a three-alternative, forced-choice procedure in a subgroup of 20 participants (23 implanted ears). For each ear tested in these participants, GDTs were measured at two electrode locations with a large difference in PLVs. For 26 implanted ears tested in 23 participants, speech perception performance was evaluated using Consonant-Nucleus-Consonant (CNC) word lists presented in quiet and in noise at signal-to-noise ratios (SNRs) of +10 and +5 dB. Linear Mixed effect Models were used to evaluate the effect of electrode location on the PLV and the effect of the PLV on GDT after controlling for the stimulation level effects. Pearson product-moment correlation tests were used to assess the correlations between PLVs, CNC word scores measured in different conditions, and the degree of noise effect on CNC word scores.ResultsThere was a significant effect of electrode location on the PLV after controlling for the effect of stimulation level. There was a significant effect of the PLV on GDT after controlling for the effects of stimulation level, where higher PLVs (greater synchrony) led to lower GDTs (better temporal resolution acuity). PLVs were not significantly correlated with CNC word scores measured in any listening condition or the effect of competing background noise presented at a SNR of +10 dB on CNC word scores. In contrast, there was a significant negative correlation between the PLV and the degree of noise effect on CNC word scores for a competing background noise presented at a SNR of +5 dB, where higher PLVs (greater synchrony) correlated with smaller noise effects on CNC word scores.ConclusionsThis newly developed method can be used to assess peripheral neural synchrony in CI users, a physiological phenomenon that has not been systematically evaluated in electrical hearing. Poorer peripheral neural synchrony leads to lower temporal resolution acuity and is correlated with a larger detrimental effect of competing background noise presented at a SNR of 5 dB on speech perception performance in post-lingually deafened adult CI users.

Project description:BACKGROUND:Cochlear implants can provide auditory perception to many people with hearing impairment who derive insufficient benefits from hearing aid use. For optimal speech perception with a cochlear implant, postoperative auditory training is necessary to adapt the brain to the new sound transmitted by the implant. Currently, this training is usually conducted via face-to-face sessions in rehabilitation centers. With the aging of society, the prevalence of age-related hearing loss and the number of adults with cochlear implants are expected to increase. Therefore, augmenting face-to-face rehabilitation with alternative forms of auditory training may be highly valuable. OBJECTIVE:The purpose of this multidisciplinary study was to evaluate the newly developed internet-based teletherapeutic multimodal system Train2hear, which enables adult cochlear implant users to perform well-structured and therapist-guided hearing rehabilitation sessions on their own. METHODS:The study was conducted in 3 phases: (1) we searched databases from January 2005 to October 2018 for auditory training programs suitable for adult cochlear implant users; (2) we developed a prototype of Train2hear based on speech and language development theories; (3) 18 cochlear implant users (mean age 61, SD 15.4 years) and 10 speech and language therapists (mean age 34, SD 10.9 years) assessed the usability and the feasibility of the prototype. This was achieved via questionnaires, including the System Usability Scale (SUS) and a short version of the intrinsic motivation inventory (KIM) questionnaires. RESULTS:The key components of the Train2hear training program are an initial analysis according to the International Classification of Functioning, Disability and Health; a range of different hierarchically based exercises; and an automatic and dynamic adaptation of the different tasks according to the cochlear implant user's progress. In addition to motivational mechanisms (such as supportive feedback), the cochlear implant user and therapist receive feedback in the form of comprehensive statistical analysis. In general, cochlear implant users enjoyed their training as assessed by KIM scores (mean 19, SD 2.9, maximum 21). In terms of usability (scale 0-100), the majority of users rated the Train2hear program as excellent (mean 88, SD 10.5). Age (P=.007) and sex (P=.01) had a significant impact on the SUS score with regard to usability of the program. The therapists (SUS score mean 93, SD 9.2) provided slightly more positive feedback than the cochlear implant users (mean 85, SD 10.3). CONCLUSIONS:Based on this first evaluation, Train2hear was well accepted by both cochlear implant users and therapists. Computer-based auditory training might be a promising cost-effective option that can provide a highly personalized rehabilitation program suited to individual cochlear implant user characteristics.

Project description:BackgroundCochlear implants (CIs) are auditory prostheses designed to support spoken communication in persons with severe to profound hearing loss. Many post-lingually deaf adult CI users achieve good speech recognition in quiet; unfortunately, CI technology conveys a degraded representation of pitch and timbre, essential components of music. Not surprisingly, most CI users achieve significantly poorer perception and enjoyment of music compared with normal hearing listeners. Anecdotal evidence indicates that this impacts music engagement, particularly singing and playing instruments requiring ongoing tuning to external pitches or producing intervallic ratios. Interestingly, a small cohort of adult CI users has shown remarkable success in recovering or developing musical skills, but their success is poorly understood. Greater understanding of their efforts and attitudes may suggest potential rehabilitative approaches for other CI users.PurposeThis article documented personal characteristics and experiences perceived to contribute to high level musicianship. Research questions included: (1) What forms of practice/experience have most contributed to (re)establishing satisfying music making? (2) What situations or musical tasks are most frustrating or challenging? (3) What attitudes, motivational factors, or forms of support help CI users persist in working toward improved music engagement?MethodsQualitative and patient-engaged research methodologies were used. Our study involved a unique collaboration of six CI users engaged in high levels of musicianship and a researcher whose scholarship focuses on music and CIs. The CI recipients conveyed their experiences and attitudes regarding music and CIs through open-ended narratives. These narratives were analyzed using an integrative approach of inductive and deductive coding methods. The codes and themes that emerged through inductive methods were then organized within the Dynamic Problem Solving Model for Management of Music Listening Environments (Gfeller et al., 2019a).OutcomesThis paper provides reflections of six CI users who successfully engage in active music making, including on-going tuning to external pitches and ensemble participation. Their perspectives emphasize the importance of pre-CI music instruction, extensive practice and immersion in music listening and playing, persistence and self-efficacy, and problem solving skills that optimize music engagement, and suggest possible strategies useful to other CI users interested in improving music experiences.

Dataset Information

Use of Adult Patient Focus Groups to Develop the Initial Item Bank for a Cochlear Implant Quality-of-Life Instrument.

Importance

Objective

Design, setting, and participants

Main outcomes and measures

Results

Conclusions and relevance

Publications

Use of Adult Patient Focus Groups to Develop the Initial Item Bank for a Cochlear Implant Quality-of-Life Instrument.

Similar Datasets

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