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World workshop on oral medicine VIII: development of a core outcome set for dry mouth: the patient perspective

Santos-Silva, Alan Roger, Villa, Alessandro, Kerr, Alexander Ross, Delli, Konstantina, Simms, Melanie Louise, Shorrer, Michal Kuten, Wiriyakija, Paswach, Jensen, Siri Beier, Niklander, Sven Eric, Sankar, Vidya and Ni Riordain, Richeal 2023. World workshop on oral medicine VIII: development of a core outcome set for dry mouth: the patient perspective. Oral Surgery, Oral Medicine, Oral Pathology and Oral Radiology 135 (6) , pp. 876-884. 10.1016/j.oooo.2023.01.015

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Abstract

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.

Item Type: Article
Date Type: Publication
Status: Published
Schools: Dentistry
Publisher: Elsevier
ISSN: 2212-4403
Date of First Compliant Deposit: 20 March 2023
Date of Acceptance: 31 January 2023
Last Modified: 03 Mar 2024 17:09
URI: https://orca.cardiff.ac.uk/id/eprint/157817

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