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

McRackan, Theodore R.; Velozo, Craig A.; Holcomb, Meredith A.; Camposeo, Elizabeth L.; Hatch, Jonathan L.; Meyer, Ted A.; Lambert, Paul R.; Melvin, Cathy L.; Dubno, Judy R.

doi:10.1001/jamaoto.2017.1182

Cited by 40 publications

(75 citation statements)

References 36 publications

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“…They are not designed to be used across patient populations, diseases, or interventions, which is relevant for economic evaluation of medical interventions. Disease-specific questionnaires specifically developed for use in CI recipients, such as the commonly used NCIQ, lack involvement of CI recipients in the development of item banks for the instruments, which could result in the absence of certain important CI-related HRQoL concepts [McRackan et al, 2017[McRackan et al, , 2018a. Moreover, the NCIQ was validated using a limited number of participants from only one clinical site and psychometric testing was performed using former, less rigorous techniques compared to current standards.…”

Section: Discussionmentioning

confidence: 99%

Systematic Review of Quality of Life Assessments after Cochlear Implantation in Older Adults

et al. 2020

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Cochlear implants (CI) have increasingly been adopted in older adults with severe to profound sensorineural hearing loss as a result of the growing and aging world population. Consequently, researchers have recently shown great interest in the cost-effectiveness of cochlear implantation and its effect on quality of life (QoL) in older CI users. Therefore, a systematic review and critical evaluation of the available literature on QoL in older adult CI users was performed according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. Studies were selected by searching MEDLINE (PubMed) and the Cochrane Library and by checking the reference lists of relevant articles. Inclusion criteria were as follows: (1) the study sample were adults aged 50 years and older with postlingual onset of bilateral severe to profound hearing loss, (2) all subjects received a multi-electrode CI, and (3) QoL was assessed before and after implantation. Out of 1,093 records, 18 articles were accepted for review. Several studies demonstrated significant positive effects of cochlear implantation on QoL in older adults, but high-level evidence-based medicine is lacking. An improvement of QoL was generally reported when using disease-specific instruments, which are designed to detect treatment-specific changes, whereas the outcomes of generic QoL questionnaires, assessing general health states, were rather ambiguous. However, only generic questionnaires would be able to provide calculations of the cost-effectiveness of CI and comparisons across patient populations, diseases, or interventions. Hence, generic and disease-specific QoL instruments are complementary rather than contradictory. In general, older CI users’ QoL was assessed using a variety of methods and instruments, which complicated comparisons between studies. There is a need for a standardized, multidimensional, and comprehensive QoL study protocol including all relevant generic and disease-specific instruments to measure and compare QoL, utility, and/or daily life performance in CI users.

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Section: Discussionmentioning

confidence: 99%

Systematic Review of Quality of Life Assessments after Cochlear Implantation in Older Adults

et al. 2020

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“…Information found through the literature search guided the development of a focus group protocol for patients with CI. Central and minor themes identified from the focus group were used to generate initial items, consisting of 101 items grouped into seven hypothesized domain constructs: communication, emotional, entertainment, environment, independence, listening effort, and social (McRackan et al, 2017). To test the psychometric properties of the initial item pool, responses from 371 subjects were analyzed with CFA and IRT.…”

Section: Ciqol Item Bank Developmentmentioning

confidence: 99%

“…It consists of 60 items separated into six domains (basic sound perception, advanced sound perception, speech production, self-esteem, activity, and social interactions). The included items and domains were developed by expert opinion, rather than from information provided by CI users, and therefore do not include certain domains that CI users value as important (Hughes, Hutchings, Rapport, McMahon, & Boisvert, 2018;McRackan et al, 2017). In addition, the NCIQ was validated and tested on 91 Dutch-speaking participants (including 46 controls) from a single clinical site in the Netherlands.…”

Section: Ciqol Item Bank Developmentmentioning

confidence: 99%

Cochlear Implant Quality of Life (CIQOL): Development of a Profile Instrument (CIQOL-35 Profile) and a Global Measure (CIQOL-10 Global)

McRackan

Hand

Velozo

et al. 2019

J Speech Lang Hear Res

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Purpose: Valid, reliable, and efficient patient-reported outcome measures are needed to quantify quality of life (QOL) outcomes after cochlear implantation to supplement information obtained from performance-based outcomes. We previously developed the Cochlear Implant Quality of Life (CIQOL) item bank to serve as the source of items for subsequent instruments. This study reports the development and psychometric properties for 2 of these new instruments, the CIQOL-35 Profile and the CIQOL-10 Global. Method: Cochlear implant (CI) users referred from the CIQOL Development Consortium (n = 371), consisting of 20 CI centers across the United States, provided responses to the 81-item CIQOL item bank, which are grouped into 6 QOL domains (communication, emotional, entertainment, environment, listening effort, and social). Responses to the 81 CIQOL items were analyzed using item response theory to determine individual item difficulty, discrimination, and model fit to select the set of items for the profile instrument and global measure that would optimize their measurement characteristics. Results: The 35-item CIQOL-35 Profile instrument assesses outcomes represented in the 6 domains of the CIQOL final item pool. The 10-item CIQOL-10 Global measure produces a single, overall QOL score. After ensuring the upper and lower ends of the item difficulty continuum were represented (item difficulty range: −2.48 to 2.47), the items with the highest discrimination ability for each domain were selected for the CIQOL-35 Profile instrument (discrimination range: 0.67-1.37). Items were selected for the CIQOL-10 Global measure in a similar manner. Conclusion: The CIQOL-35 Profile and CIQOL-10 Global instruments provide psychometrically sound and efficient measures that can be used to assess QOL in adult CI users in both clinical and research settings.

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“…In a next step, items were discussed in four different focus groups—a procedure which is frequently used in initial item development [ 39 , 40 ]. The aim was to gain feedback on the clarity and interpreted content of each item.…”

Section: Methodsmentioning

confidence: 99%

Challenges in Navigating the Health Care System: Development of an Instrument Measuring Navigation Health Literacy

Griese

Berens

Nowak

et al. 2020

IJERPH

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Due to their rapid expansion and complexity, it is increasingly difficult for patients to orient themselves in health care systems. Therefore, patients require a high degree of health literacy, or more precisely, navigation health literacy (HL-NAV). The actual extent of HL-NAV of patients and citizens is still largely unknown due to the lack of adequate measurement instruments. Thus, within the new international Health Literacy Population Survey 2019 (HLS19), one aim was to develop a suitable instrument for measuring HL-NAV in the HLS19 the HL-NAV-HLS19. The item development was conducted by an international working group within the HLS19 Consortium led by the first and last authors. Methodologically, it is based on a scoping literature review, development of a conceptual framework for HL-NAV, and first item formation, as well as an evaluation by experts, stakeholders, focus groups, pre-test interviews, and continuously feedback from the HLS19 Consortium. HL-NAV was defined as the ability to access, understand, appraise, and apply information on navigational issues, drawing on ten selected publications and the health literacy definition of the HLS-EU Consortium. Main tasks of HL-NAV at the system, organization, and interaction level were identified, to which first related items were assigned. Based on the feedback from experts, the focus group discussions, and the HLS19 Consortium, the instrument was slightly revised. Finally, twelve items proved to be feasible in the pre-test. The instrument will be used for the first time in the HLS19 survey and will provide first data on HL-NAV in general populations for the countries participating in HLS19. It is suited for cross-country comparisons and monitoring, as well as for intervention development. However, the instrument should be translated into and validated in further languages and countries for population samples.

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

Cited by 40 publications

References 36 publications

Systematic Review of Quality of Life Assessments after Cochlear Implantation in Older Adults

Systematic Review of Quality of Life Assessments after Cochlear Implantation in Older Adults

Cochlear Implant Quality of Life (CIQOL): Development of a Profile Instrument (CIQOL-35 Profile) and a Global Measure (CIQOL-10 Global)

Challenges in Navigating the Health Care System: Development of an Instrument Measuring Navigation Health Literacy

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