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

Thumbnail Image
Diniz-Freitas, Márcio
López-Pintor, Rosa María
Bissonnette, Caroline
Dan, Hongxia
Kuduva Ramesh, Shilpa Shree
Valdéz, J. Amadeo
Brennan, Michael T.
Burkhart, Nancy W.
Farag, Arwa
Greenberg, Martin S.
Journal Title
Journal ISSN
Volume Title
Elsevier Inc.
Research Projects
Organizational Units
Journal Issue
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.
Oral lichen planus
Diniz-Freitas, M., López-Pintor, R. M., Bissonnette, C., Dan, H., Kuduva Ramesh, S. S., Valdéz, J. A., Brennan, M. T., Burkhart, N. W., Farag, A., Greenberg, M. S., Hong, C., Setterfield, J. F., Woo, S.-B., Sollecito, T. P., Byrne, H., Robledo-Sierra, J., Taylor, J., Ni Riordain, R. (2023) ‘World Workshop on Oral Medicine VIII: Development of a core outcome set for oral lichen planus: The patient perspective’, Oral Surgery, Oral Medicine, Oral Pathology and Oral Radiology. doi: 10.1016/j.oooo.2023.02.015
Link to publisher’s version