We conducted a qualitative study on patients’ perspectives of dry mouth outcomes to explore their personal experiences and investigate what outcomes are most important to them. This work was part of the WONDER initiative (World Workshop on Oral Medicine Outcomes Initiative for the Direction of Research) exploring Core Outcome Measures in Effectiveness Trials (COMET).
This was a qualitative study based on digitally recorded, semi-structured interviews using a study-specific topic guide incorporating focus groups of patients with dry mouth secondary to Sjögren syndrome, and head and neck radiotherapy. The interviews were performed until data saturation is achieved, all transcripts were evaluated for accuracy and then anonymized.
Two focus groups consisting of four participants per group identified four distinct themes: (1) impact on oral health and function; (2) social isolation and withdrawal; (3) frustrations with dry mouth management; and (4) limited knowledge of the medical community and lack of understanding of family and friends.
The diversity of self-reported outcomes and the complexity of patients’ perceptions identified in our work may represent additional barriers to successful dry mouth management that should be considered in the design of future clinical trials.
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Accepted: January 31, 2023
Received in revised form: January 30, 2023
Received: October 30, 2022
Publication stageIn Press Journal Pre-Proof
© 2023 Published by Elsevier Inc.