COMET Initiative | World Workshop on Oral Medicine VIII: Development of a core outcome set for oral lichen planus: the patient perspective

World Workshop on Oral Medicine VIII: Development of a core outcome set for oral lichen planus: the patient perspective

Objective: This study aimed to explore the lived experience of patients with oral lichen planus (OLP) and investigate what treatment-related outcomes are the most important to them and should be included in a core outcome set (COS) for OLP.

Study design: A qualitative study involving focus group work with 10 participants was conducted. Interviews with each focus group were held twice: session 1 explored the lived experience of patients with OLP, and session 2 allowed patients to review a summary of the outcome domains used in the OLP literature to date. The discussions were recorded, transcribed verbatim, and analyzed using framework analysis.

Results: In session 1, 4 themes and 8 sub-themes emerged from the data analysis. An additional outcome, 'knowledge of family and friends,' was suggested in session 2.

Conclusions: We have gained valuable insight into the lived experience of patients with OLP via this qualitative study. To our knowledge, this study is the first to explore the patient perspective on what should be measured in clinical trials on OLP, highlighting an important additional suggested outcome. This additional outcome will be voted upon in a consensus process to determine a minimum COS for OLP.

Contributors

Márcio Diniz-Freitas, Rosa María López-Pintor, Caroline Bissonnette, Hongxia Dan, Shilpa Shree Kuduva Ramesh, J Amadeo Valdéz, Michael T Brennan, Nancy W Burkhart, Arwa Farag, Martin S Greenberg, Catherine Hong, Jane F Setterfield, Sook-Bin Woo, Thomas P Sollecito, Harriet Byrne, Jairo Robledo-Sierra, Jennifer Taylor, Richeal NiRiordain

Publication

Journal: Oral Surgery, Oral Medicine, Oral Pathology, Oral Radiology
Volume: 135
Issue: 6
Pages: 781 - 791
Year: 2023
DOI: 10.1016/j.oooo.2023.02.015

Further Study Information

Current Stage: Completed
Date:
Funding source(s): The WWOM VIII Steering Committee gratefully acknowledges the following organizations, companies, and individuals that provided financial support for WWOM VIII: American Academy of Oral Medicine, European Association of Oral Medicine, Church & Dwight Co. Inc., Colgate Palmolive, and patients of Dr. Ross Kerr

Health Area

Disease Category: Dentistry & oral health

Disease Name: Oral lichen planus

Target Population

Age Range: Unknown

Sex: Either

Nature of Intervention: Any

Stakeholders Involved

- Consumers (patients)

Study Type

- Patient perspectives

Method(s)

- Focus group(s)
- Interview

A qualitative study incorporating focus groups of patients with OLP was conducted. The reporting of the study follows guidance from the Standard for Reporting Qualitative Research (SRQR).11 Interviews with each focus group were held twice: session 1 explored
the lived experience of patients with OLP, and session 2 allowed patients to review a summary of the outcome domains used in the OLP literature to date.