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Development of the lichen planus quality of life questionnaire (LPQoL) informed by expert clinician input and patient feedback: a retrospective survey study

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Abstract

Lichen planus (LP) can affect multiple body sites including skin, mucosae, scalp and nails, causing considerable impact on patients’ quality of life. Currently, there are no LP patient-reported outcome measures (PROMs) that address all body sites potentially affected by LP. We developed a LP Quality of Life Questionnaire (LPQoL), informed by an expert consortium and patient survey study, to address this gap. The study was approved by our institution’s Institutional Review Board. First, a 22-item LPQoL was designed with input from LP experts at our institution. The tool was then optimized by garnering input from patients recently diagnosed with LP, who were asked to complete the LPQoL, as well as the Dermatology Life Quality Index (DLQI) and a feedback form about the LPQoL. Fifty-eight of 150 patients (39% response rate) returned the questionnaire. Mean DLQI score was 4.9 ± 5.6 SD (range 0–25) and mean LPQoL score was 13.6 ± 10.4 SD (range 0–54). LPQoL score was positively correlated with DLQI score (r = 0.79; p < 0.001). Forty-nine out of 56 (88%) and 6/56 (11%) rated the LPQoL as ‘very easy’ or ‘fairly easy’ to complete, respectively. Based on participants’ feedback, we increased the recall period from one week to one month and added questions on esophageal involvement. With iterative input from LP experts and patients, we developed a LPQoL to address the gap in a multi-site PROM specific to LP. This is a pilot study and there is ongoing validation studies; therefore, this measure should not be used in clinical practice or research until validated.

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Data availability

The data that support the findings of this study are available from the corresponding author, JSL, upon reasonable request.

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Acknowledgements

We would like to thank the anonymous patients who took part in the study. We are also grateful to the Cardiff University DLQI team for providing the license to use their questionnaire in this study and for verifying that the LPQoL does not encroach on any copyright of the DLQI.

Funding

Dr Xie is funded by the British Association of Dermatologist's Geoffrey Dowling Fellowship for her visiting research fellowship. The research is funded from the Appignani Lichen Planus Benefactor Gift. The funders have not been involved in the review process.

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Authors and Affiliations

  1. Department of Dermatology, Mayo Clinic, 200 1st St SW, Rochester, MN, 55905, USA

    Fangyi Xie, Julio C. Sartori Valinotti, Nneka I. Comfere, Alexander Meves, Dennis H. Murphree & Julia S. Lehman

  2. Department of Dermatology, Mayo Clinic Arizona, 5777 E. Mayo Blvd., Phoenix, AZ, 85054, USA

    Colleen M. Morken, Mark R. Pittelkow & Aaron R. Mangold

  3. Department of Quantitative Health Sciences, Mayo Clinic Arizona, 5777 E. Mayo Blvd, Phoenix, AZ, 85054, USA

    Nan Zhang

  4. Department of Laboratory Medicine and Pathology, Mayo Clinic, 200 1st St SW, Rochester, MN, 55905, USA

    Nneka I. Comfere & Julia S. Lehman

  5. Department of Biochemistry and Molecular Biology, Mayo Clinic, 200 1st St SW, Rochester, MN, 55905, USA

    Alexander Meves

  6. Department of Artificial Intelligence and Informatics, Mayo Clinic, 200 1st St SW, Rochester, MN, 55905, USA

    Dennis H. Murphree

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  1. Fangyi Xie
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Consortia

The Mayo Clinic Lichen Planus Consortium

Contributions

All authors conceptualization; FX and JSL methodology; FX and JSL data curation; FX formal analysis; FX investigation; JSL supervision; FX and JSL original draft; all authors final review and editing.

Corresponding author

Correspondence to Julia S. Lehman.

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Conflict of interest

A.R. Mangold is a principal investigator and consultant for Incyte and Eli Lilly.

Ethical approval

IRB approval status: Reviewed and approved by Mayo Clinic IRB; approval #21-007797.

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Xie, F., Morken, C.M., Zhang, N. et al. Development of the lichen planus quality of life questionnaire (LPQoL) informed by expert clinician input and patient feedback: a retrospective survey study. Arch Dermatol Res 315, 1561–1569 (2023). https://doi.org/10.1007/s00403-023-02534-4

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  • DOI: https://doi.org/10.1007/s00403-023-02534-4

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