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  1. Hibbert A, Vesala M, Kerr M, Fackrell K, Harrison S, Smith H, et al.
    Interact J Med Res, 2020 Jan 07;9(1):e14446.
    PMID: 31909716 DOI: 10.2196/14446
    BACKGROUND: A minimum standard based upon consensus decision making recommends a core set of tinnitus-specific health complaints (outcome domains) that should be assessed and reported in all clinical trials as this enables comparisons to be made across studies as well as data pooling for meta-analysis.

    OBJECTIVE: This study aimed to further clarify how the outcome domain concepts should be defined for 5 of the core set: tinnitus intrusiveness, sense of control, acceptance of tinnitus, concentration, and ability to ignore. This step requires a clear and fully elaborated definition for each outcome domain, moving from an abstract or a vague concept to an operationalized and measurable health-related construct, so that a suitable measurement instrument can then be identified.

    METHODS: A series of 5 focus group-style semistructured discussions were conducted via a Web-based discussion forum, each open for 2 weeks and ending with a vote. The participants included 148 tinnitus experts who completed a preceding e-Delphi survey that had generated the original set of minimum standards. The participants were health care users living with tinnitus, health care professionals, clinical researchers, commercial representatives, and funders.

    RESULTS: The Web discussions led to a revision of all 5 original plain language definitions that had been used in the preceding e-Delphi survey. Each revised definition was voted by 8 to 53 participants and reached the prespecified threshold of 70% consensus for all except tinnitus intrusiveness. Although a single definition was not agreed upon for tinnitus intrusiveness, the majority of participants shared the view that the concept should be sufficiently broad to encapsulate a range of subdomains. The examples included tinnitus awareness, unpleasantness, and impact on different aspects of everyday life. Thematic analysis of the 5 Web-based discussion threads gave important insights into expert interpretations of each core outcome domain, generating an operationalized and measurable health construct in each case.

    CONCLUSIONS: The qualitative data gathered during the Web-based discussion forum provided an important in-depth understanding of the health concepts that had raised a debate during earlier face-to-face meetings. The descriptive summaries and definitions provide sufficient operationalization of those concepts to proceed to the second stage of core outcome set development that is to identify and evaluate suitable measurement instruments. This study supports the use of Web-based peer discussion forums in defining health concepts.

  2. Hall DA, Hibbert A, Vesala M, Kerr M, Harrison S, Core Outcome Measures in Tinnitus (COMiT)
    Prog Brain Res, 2021;260:205-221.
    PMID: 33637218 DOI: 10.1016/bs.pbr.2020.12.001
    An increasing number of health researchers are recognizing the benefits of crowdsourcing. Web-based discussion forums are well suited for collecting qualitative research data with tinnitus participants and forum posts can be evaluated using thematic analysis. The present study reports an innovative use of such qualitative data contributed by a group of 148 people with tinnitus and tinnitus professionals through the crowdsourcing platform Tinnitus Talk. While the primary research question was focused on defining symptom concepts, discussions were broad-ranging and extended far beyond this topic. Thematic analysis of the discussion conducted by two analysts identified three novel emerging themes and these were not pre-planned according to the moderator's script. These were (i) the lived experience of tinnitus, (ii) perspectives on interventions for tinnitus, and (iii) the experience of participating in a web discussion forum. These unexpected themes contribute to a richer and more in-depth understanding of tinnitus seen through the eyes of those who experience it on a daily basis. Findings are important since spontaneous themes presumably reflect issues that are of personal relevance and importance to the participants. They therefore give insights into future research directions and have implications for patient-centered counseling strategies that could be effective in clinic.
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