Use of adult patient focus groups to develop the initial item bank for a cochlear implant quality-of-life instrument

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

Research output: Contribution to journalArticle

6 Citations (Scopus)

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.

Original languageEnglish (US)
Pages (from-to)975-982
Number of pages8
JournalJAMA Otolaryngology - Head and Neck Surgery
Volume143
Issue number10
DOIs
StatePublished - Oct 2017

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Cochlear Implants
Focus Groups
Quality of Life
Information Systems
Guidelines
Social Isolation
Aptitude
Qualitative Research
Health Services Needs and Demand
Tertiary Care Centers
Emotions
Communication
Interviews
Education
Equipment and Supplies

ASJC Scopus subject areas

  • Surgery
  • Otorhinolaryngology

Cite this

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.

In: JAMA Otolaryngology - Head and Neck Surgery, Vol. 143, No. 10, 10.2017, p. 975-982.

Research output: Contribution to journalArticle

McRackan, TR, Velozo, CA, Holcomb, MA, Camposeo, EL, Hatch, JL, Meyer, TA, Lambert, PR, Melvin, CL & Dubno, JR 2017, 'Use of adult patient focus groups to develop the initial item bank for a cochlear implant quality-of-life instrument', JAMA Otolaryngology - Head and Neck Surgery, vol. 143, no. 10, pp. 975-982. https://doi.org/10.1001/jamaoto.2017.1182
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. / Use of adult patient focus groups to develop the initial item bank for a cochlear implant quality-of-life instrument. In: JAMA Otolaryngology - Head and Neck Surgery. 2017 ; Vol. 143, No. 10. pp. 975-982.
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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.",
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AU - Velozo, Craig A.

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AU - Camposeo, Elizabeth L.

AU - Hatch, Jonathan L.

AU - Meyer, Ted A.

AU - Lambert, Paul R.

AU - Melvin, Cathy L.

AU - Dubno, Judy R.

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