Abstract
Objectives
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).
Study Design
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.
Results
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.
Conclusions
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.
Key words
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Article info
Publication history
Accepted:
January 31,
2023
Received in revised form:
January 30,
2023
Received:
October 30,
2022
Publication stage
In Press Journal Pre-ProofIdentification
Copyright
© 2023 Published by Elsevier Inc.