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

被引:3
|
作者
Diniz-Freitas, Marcio [1 ]
Lopez-Pintor, Rosa Maria [2 ]
Bissonnette, Caroline [3 ]
Dan, Hongxia [4 ]
Ramesh, Shilpa Shree Kuduva [5 ]
Valdez, J. Amadeo [6 ]
Brennan, Michael T. [7 ,8 ]
Burkhart, Nancy W. [9 ]
Farag, Arwa [10 ,11 ,12 ]
Greenberg, Martin S. [12 ,13 ]
Hong, Catherine [13 ,14 ]
Setterfield, Jane F. [14 ,15 ,16 ,17 ]
Woo, Sook-Bin [17 ,18 ,19 ]
Sollecito, Thomas P. [12 ,13 ,19 ]
Byrne, Harriet [20 ]
Robledo-Sierra, Jairo [21 ]
Taylor, Jennifer [22 ]
Ni Riordain, Richeal [20 ]
机构
[1] Santiago De Compostela Univ, Hlth Res Inst Santiago De Compostela IDIS, Sch Med & Dent, Special Care Unit,OMEQUI Res Grp, Santiago De Compostela, Spain
[2] Univ Complutense Madrid, Sch Dent, Dept Dent Clin Specialties, ORALMED Res Grp, Madrid, Spain
[3] Univ Montreal, Dept Stomatol, Montreal, PQ, Canada
[4] Sichuan Univ, West China Hosp Stomatol, Natl Clin Res Ctr Oral Dis, State Key Lab Oral Dis, Chengdu, Peoples R China
[5] Govt Dent Coll & Hosp, Dept Oral Med & Radiol, Chennai 600003, Tamil Nadu, India
[6] MAHEC Dent Hlth Ctr, Asheville, NC USA
[7] Atrium Hlth Carolinas Med Ctr, Dept Oral Med Oral & Maxillofacial Surg, Charlotte, NC USA
[8] Wake Forest Univ, Bowman Gray Sch Med, Dept Otolaryngol Head & Neck Surg, Winston Salem, NC 27109 USA
[9] Texas A&M Univ, Int Oral Lichen Planus Support Grp, Coll Dent, Dallas, TX USA
[10] King Abdulaziz Univ, Fac Dent, Dept Oral Diagnost Sci, Jeddah, Saudi Arabia
[11] Tufts Univ, Sch Dent Med, Dept Diagnost Sci, Oral Med Div, Boston, MA 02111 USA
[12] Univ Penn, Sch Dent Med, Dept Oral Med, Philadelphia, PA USA
[13] Natl Univ Singapore, Fac Dent, Discipline Orthodont & Pediat Dent, Singapore, Singapore
[14] Guys & St Thomas NHS Fdn Trust, Guys Hosp, Dept Oral Med, London, England
[15] Kings Coll London, Fac Dent Oral & Craniofacial Sci, Ctr Host Microbiome Interact, London, England
[16] St Johns Inst Dermatol, London, England
[17] StrataDx, Ctr Oral Pathol, Lexington, MA USA
[18] Harvard Sch Dent Med, Boston, MA USA
[19] Univ Penn Hlth Syst, Div Oral Med, Philadelphia, PA USA
[20] Univ Coll Cork, Cork Univ Dent Sch & Hosp, Coll Med & Hlth, Cork, Ireland
[21] CES Univ, Fac Dent, Medellin, Colombia
[22] Glasgow Dent Hosp & Sch, Dept Oral Med, Glasgow, Scotland
关键词
QUALITY-OF-LIFE; REPORTED OUTCOMES; MUCOSAL DISEASE;
D O I
10.1016/j.oooo.2023.02.015
中图分类号
R78 [口腔科学];
学科分类号
1003 ;
摘要
Objective. This study aimed to explore the lived experience of patients with oral lichen planus (OLP) and investigate what treat-ment-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, highlight-ing an important additional suggested outcome. This additional outcome will be voted upon in a consensus process to determine a minimum COS for OLP.
引用
收藏
页码:781 / 791
页数:11
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