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

  • 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
  • University of Santiago de Compostela
  • Complutense University
  • University of Montreal
  • Sichuan University
  • Tamil Nadu Government Dental College and Hospital
  • MAHEC Dental Health Center
  • Carolinas Medical Center
  • Wake Forest University
  • Texas A&M University
  • King Abdulaziz University
  • Tufts University
  • University of Pennsylvania
  • National University of Singapore
  • Guy's and St Thomas' NHS Foundation Trust
  • King's College London
  • StrataDx
  • Harvard University
  • Universidad CES
  • University of Glasgow

Research output: Contribution to journalArticlepeer-review

Abstract

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.

Original languageEnglish
Pages (from-to)781-791
Number of pages11
JournalOral Surgery, Oral Medicine, Oral Pathology and Oral Radiology
Volume135
Issue number6
DOIs
Publication statusPublished - Jun 2023

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