World Workshop on Oral Medicine VIII: Development of a core outcome set for dry mouth: The Patient Perspective

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.

Aim

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.

Contributors

Alan Roger Santos-Silva DDS, MSc, PhD ,
Alessandro Villa DDS, PhD, MPH ,
Alexander Ross Kerr DDS, MSD ,
Konstantina Delli DDS, MSc, Dr Med Dent, PhD ,
Melanie Louise Simms BDS, MFDS RCPS (Glasg), PGCert (Dent Ed) ,
Michal Kuten Shorrer DMD, DMSc, MHA ,
Paswach Wiriyakija DDS, MSc, PhD , Siri Beier Jensen DDS, PhD ,
Sven Eric Niklander DDS, MDent, MSc, PhD ,
Vidya Sankar DMD, MHS, FDS RCSEd Associate Professor ,
R ´icheal N ´i R ´iord ´ain MBBS, BDS, MA, PhD, MFD, FFD, FDS(OM)

Publication

Journal: Oral Surgery Oral Medicine Oral Pathology Oral Radiology
Volume:
Issue:
Pages: -
Year: 2023
DOI: 10.1016/j.oooo.2023.01.015

Further Study Information

Current Stage: Completed
Date:
Funding source(s): This work was supported by The American Academy of Oral Medicine, The European Association of Oral Medicine, Church & Dwight Co. Inc., Colgate Palmolive, and patients of Dr. A. Ross Kerr.


Health Area

Disease Category: Dentistry & oral health

Disease Name: Dry mouth

Target Population

Age Range: Unknown

Sex: Either

Nature of Intervention: Drug

Stakeholders Involved

- Consumers (patients)

Study Type

- Patient perspectives

Method(s)

- Focus group(s)
- Interview
- Semi structured discussion

This was a qualitative study based on recorded semi-structured interviews using a study-
specific topic guide and incorporating focus groups of participants with dry mouth. Each focus group was held in two parts: part 1 explored the personal experience of patients with
dry mouth, and part 2 allowed patients to review a summary of the outcomes used in the dry
mouth literature. A discussion ensued regarding the importance, from the patient perspective, of the various outcomes found in the literature and which outcome domains of importance to
patients were absent from the list presented

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