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Published in: Dermatology and Therapy 9/2023

Open Access 28-07-2023 | Lichen Planus | Original Research

Patient Experience of Lichen Planus: A Qualitative Exploration of Signs, Symptoms, and Health-Related Quality of Life Impacts

Authors: Aoife Mahon-Smith, Molly Clifford, Anjali Batish, Rosie Sharp, Charlotte Panter, Christel Naujoks, Eva Schruf, Nicolò Compagno, Santiago G. Moreno

Published in: Dermatology and Therapy | Issue 9/2023

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Abstract

Introduction

Lichen planus (LP) is an inflammatory skin disorder that can present in various forms across the body, including lesions on the skin (cutaneous LP [CLP]), scalp (lichen planopilaris [LPP]), and mucosal regions (mucosal LP [MLP]). Qualitative exploration of the patient experience of LP, notably symptoms and impacts on health-related quality of life (HRQoL), is limited. A scarcity of research was also identified relating to emotional wellbeing impacts of CLP patients. Two qualitative studies were conducted with LP patients to address these gaps.

Methods

Study 1 consisted of exit interviews conducted with a subset of adult patients with MLP (n = 5), CLP (n = 4), and LPP (n = 4) enrolled in an LP clinical study in the United States (US) to explore the patient experience. Study 2 consisted of independent qualitative interviews conducted with adult CLP patients (n = 13) from the US and Germany to further explore impacts on emotional wellbeing.

Results

Exit interviews found that itch , pain, and skin lesions were most frequently reported as signs/symptoms of LP. Itch and skin lesions were experienced across all LP subtypes, while pain was only reported by CLP and MLP patients. These signs/symptoms impacted HRQoL including emotional wellbeing (frustration, embarrassment), daily activities (oral hygiene, clothing options), social functioning (intimacy, social activities), and physical functioning (chewing/swallowing, opening/moving mouth). Impacts on activities of daily living (ADL) and physical functioning were mostly experienced by MLP patients. Independent qualitative interviews, which further explored impacts of CLP on patients’ emotional wellbeing, identified frustration, worry, sadness, embarrassment, and depression as the most frequently experienced.

Conclusion

The findings contribute to the literature by providing qualitative insights into signs/symptoms and HRQoL impacts of LP, from the adult patient perspective. The findings also highlight the importance of considering assessment of HRQoL impacts in future clinical LP research, particularly impacts on emotional wellbeing when selecting instruments for assessment of HRQoL in the CLP population.

Trial Registration

NCT04300296.
Literature
1.
go back to reference Thandar Y, Maharajh R, Haffejee F, Mosam A. Treatment of cutaneous lichen planus (Part 1): a review of topical therapies and phototherapy. Cogent Med. 2019;6(1):1582467.CrossRef Thandar Y, Maharajh R, Haffejee F, Mosam A. Treatment of cutaneous lichen planus (Part 1): a review of topical therapies and phototherapy. Cogent Med. 2019;6(1):1582467.CrossRef
2.
go back to reference Ioannides D, Vakirlis E, Kemeny L, Marinovic B, Massone C, Murphy R, et al. European S1 guidelines on the management of lichen planus: a cooperation of the European Dermatology Forum with the European Academy of Dermatology and Venereology. J Eur Acad Dermatol Venereol. 2020;34(7):1403–14.CrossRefPubMed Ioannides D, Vakirlis E, Kemeny L, Marinovic B, Massone C, Murphy R, et al. European S1 guidelines on the management of lichen planus: a cooperation of the European Dermatology Forum with the European Academy of Dermatology and Venereology. J Eur Acad Dermatol Venereol. 2020;34(7):1403–14.CrossRefPubMed
4.
go back to reference Weston G, Payette M. Update on lichen planus and its clinical variants. Int J Women’s Dermatol. 2015;1(3):140–9.CrossRef Weston G, Payette M. Update on lichen planus and its clinical variants. Int J Women’s Dermatol. 2015;1(3):140–9.CrossRef
5.
go back to reference Kyriakis K, Terzoudi S, Palamaras I, Michailides C, Emmanuelides S, Pagana G. Sex and age distribution of patients with lichen planus. J Eur Acad Dermatol Venereol. 2006;20(5):625–6.CrossRefPubMed Kyriakis K, Terzoudi S, Palamaras I, Michailides C, Emmanuelides S, Pagana G. Sex and age distribution of patients with lichen planus. J Eur Acad Dermatol Venereol. 2006;20(5):625–6.CrossRefPubMed
6.
go back to reference Gorouhi F, Davari P, Fazel N. Cutaneous and mucosal lichen planus: a comprehensive review of clinical subtypes, risk factors, diagnosis, and prognosis. ScientificWorldJournal. 2014;2014: 742826.CrossRefPubMedPubMedCentral Gorouhi F, Davari P, Fazel N. Cutaneous and mucosal lichen planus: a comprehensive review of clinical subtypes, risk factors, diagnosis, and prognosis. ScientificWorldJournal. 2014;2014: 742826.CrossRefPubMedPubMedCentral
7.
go back to reference Usatine RP, Tinitigan M. Diagnosis and treatment of lichen planus. Am Fam Physician. 2011;84(1):53–60.PubMed Usatine RP, Tinitigan M. Diagnosis and treatment of lichen planus. Am Fam Physician. 2011;84(1):53–60.PubMed
8.
go back to reference Ingafou M, Leao JC, Porter SR, Scully C. Oral lichen planus: a retrospective study of 690 British patients. Oral Dis. 2006;12(5):463–8.CrossRefPubMed Ingafou M, Leao JC, Porter SR, Scully C. Oral lichen planus: a retrospective study of 690 British patients. Oral Dis. 2006;12(5):463–8.CrossRefPubMed
9.
go back to reference Edwards PC, Kelsch R. Oral lichen planus: clinical presentation and management. J Can Dent Assoc. 2002;68(8):494–9.PubMed Edwards PC, Kelsch R. Oral lichen planus: clinical presentation and management. J Can Dent Assoc. 2002;68(8):494–9.PubMed
11.
go back to reference Burke LB, Brennan MT, Ni Riordain R, Madsen LS. Novel oral lichen planus symptom severity measure for assessing patients’ daily symptom experience. Oral Dis. 2019;25(6):1564–72.CrossRefPubMed Burke LB, Brennan MT, Ni Riordain R, Madsen LS. Novel oral lichen planus symptom severity measure for assessing patients’ daily symptom experience. Oral Dis. 2019;25(6):1564–72.CrossRefPubMed
12.
go back to reference Cassol-Spanemberg J, Blanco-Carrión A, Rodríguez-de Rivera-Campillo ME, Estrugo-Devesa A, Jané-Salas E, López-López J. Cutaneous, genital and oral lichen planus: a descriptive study of 274 patients. Med Oral Patol Oral Cir Bucal. 2019;24(1):e1–7.PubMed Cassol-Spanemberg J, Blanco-Carrión A, Rodríguez-de Rivera-Campillo ME, Estrugo-Devesa A, Jané-Salas E, López-López J. Cutaneous, genital and oral lichen planus: a descriptive study of 274 patients. Med Oral Patol Oral Cir Bucal. 2019;24(1):e1–7.PubMed
13.
go back to reference Tadakamadla J, Kumar S, Lalloo R, Johnson NW. Qualitative analysis of the impact of oral potentially malignant disorders on daily life activities. PLoS ONE. 2017;12(4): e0175531.CrossRefPubMedPubMedCentral Tadakamadla J, Kumar S, Lalloo R, Johnson NW. Qualitative analysis of the impact of oral potentially malignant disorders on daily life activities. PLoS ONE. 2017;12(4): e0175531.CrossRefPubMedPubMedCentral
14.
go back to reference Ni Riordain R, Meaney S, McCreary C. Impact of chronic oral mucosal disease on daily life: preliminary observations from a qualitative study. Oral Dis. 2011;17(3):265–9.CrossRefPubMed Ni Riordain R, Meaney S, McCreary C. Impact of chronic oral mucosal disease on daily life: preliminary observations from a qualitative study. Oral Dis. 2011;17(3):265–9.CrossRefPubMed
15.
go back to reference Nassab A, Navabi N, Pour M, Charrosta N, Hashemipour M. Quality of life in patients with chronic oral mucosal conditions: a qualitative research. Pesquisa Brasileira em Odontopediatria e Clínica Integrada. 2021;21: e0092.CrossRef Nassab A, Navabi N, Pour M, Charrosta N, Hashemipour M. Quality of life in patients with chronic oral mucosal conditions: a qualitative research. Pesquisa Brasileira em Odontopediatria e Clínica Integrada. 2021;21: e0092.CrossRef
16.
go back to reference Sawant NS, Vanjari NA, Khopkar U, Adulkar S. A study of depression and quality of life in patients of lichen planus. Sci World J. 2015;2015: 817481.CrossRef Sawant NS, Vanjari NA, Khopkar U, Adulkar S. A study of depression and quality of life in patients of lichen planus. Sci World J. 2015;2015: 817481.CrossRef
17.
go back to reference Nasimi M, Ahangari N, Lajevardi V, Mahmoudi H, Ghodsi SZ, Etesami I. Quality of life and mental health status in patients with lichen planopilaris based on Dermatology Life Quality Index and General Health Questionnaire-28 questionnaires. Int J Women’s Dermatol. 2020;6(5):399–403.CrossRef Nasimi M, Ahangari N, Lajevardi V, Mahmoudi H, Ghodsi SZ, Etesami I. Quality of life and mental health status in patients with lichen planopilaris based on Dermatology Life Quality Index and General Health Questionnaire-28 questionnaires. Int J Women’s Dermatol. 2020;6(5):399–403.CrossRef
18.
go back to reference Ni Riordain R, Meaney S, McCreary C. A patient-centered approach to developing a quality-of-life questionnaire for chronic oral mucosal diseases. Oral Surg Oral Med Oral Pathol Oral Radiol Endod. 2011;111(5):578–86, 86.e1–2. Ni Riordain R, Meaney S, McCreary C. A patient-centered approach to developing a quality-of-life questionnaire for chronic oral mucosal diseases. Oral Surg Oral Med Oral Pathol Oral Radiol Endod. 2011;111(5):578–86, 86.e1–2.
19.
go back to reference Chen SC, Yeung J, Chren MM. Scalpdex: a quality-of-life instrument for scalp dermatitis. Arch Dermatol. 2002;138(6):803–7.CrossRefPubMed Chen SC, Yeung J, Chren MM. Scalpdex: a quality-of-life instrument for scalp dermatitis. Arch Dermatol. 2002;138(6):803–7.CrossRefPubMed
20.
go back to reference Wiriyakijja P, Porter S, Fedele S, Hodgson T, McMillan R, Shephard M, et al. Development and validation of a short version of Chronic Oral Mucosal Disease Questionnaire (COMDQ-15). J Oral Pathol Med. 2020;49(1):55–62.CrossRefPubMed Wiriyakijja P, Porter S, Fedele S, Hodgson T, McMillan R, Shephard M, et al. Development and validation of a short version of Chronic Oral Mucosal Disease Questionnaire (COMDQ-15). J Oral Pathol Med. 2020;49(1):55–62.CrossRefPubMed
21.
go back to reference Finlay AY, Khan GK. Dermatology Life Quality Index (DLQI)–a simple practical measure for routine clinical use. Clin Exp Dermatol. 1994;19(3):210–6.CrossRefPubMed Finlay AY, Khan GK. Dermatology Life Quality Index (DLQI)–a simple practical measure for routine clinical use. Clin Exp Dermatol. 1994;19(3):210–6.CrossRefPubMed
22.
go back to reference Balcı DD, İnandı T. Dermatology Life Quality Index scores in lichen planus: comparison of psoriasis and healthy controls. Turkderm-Turk Arch Dermatol Venereol. 2008;42(4):127–30. Balcı DD, İnandı T. Dermatology Life Quality Index scores in lichen planus: comparison of psoriasis and healthy controls. Turkderm-Turk Arch Dermatol Venereol. 2008;42(4):127–30.
23.
go back to reference Fiocco Z, Kupf S, Patzak L, Kämmerer T, Pumnea T, French LE, et al. Quality of life and psychopathology in lichen planus: a neglected disease burden. Acta Derm Venereol. 2021;101(12):adv00619.CrossRefPubMed Fiocco Z, Kupf S, Patzak L, Kämmerer T, Pumnea T, French LE, et al. Quality of life and psychopathology in lichen planus: a neglected disease burden. Acta Derm Venereol. 2021;101(12):adv00619.CrossRefPubMed
24.
go back to reference Schultz HY. Society for investigative dermatology skin disease co-morbidities project launch conference proceedings. J Investig Dermatol. 2009;129(3):525–8.CrossRefPubMed Schultz HY. Society for investigative dermatology skin disease co-morbidities project launch conference proceedings. J Investig Dermatol. 2009;129(3):525–8.CrossRefPubMed
25.
go back to reference Gupta MA. Psychiatric comorbidity in dermatological disorders. In: Walker C, Papadoulos L, editors. Psychodermatology. Cambridge: Cambridge University Press; 2005. Gupta MA. Psychiatric comorbidity in dermatological disorders. In: Walker C, Papadoulos L, editors. Psychodermatology. Cambridge: Cambridge University Press; 2005.
26.
go back to reference Mahon-Smith A, Skingley G, Ayala-Nunes L, Batish A, Sharp R, Naujoks C, et al. Evaluating the appropriateness of existing health-related quality of life measure in lichen planus. In development. Mahon-Smith A, Skingley G, Ayala-Nunes L, Batish A, Sharp R, Naujoks C, et al. Evaluating the appropriateness of existing health-related quality of life measure in lichen planus. In development.
28.
go back to reference Guest G, Bunce A, Johnson L. How many interviews are enough? An experiment with data saturation and variability. Field Methods. 2006;18:59–82.CrossRef Guest G, Bunce A, Johnson L. How many interviews are enough? An experiment with data saturation and variability. Field Methods. 2006;18:59–82.CrossRef
29.
go back to reference Turner-Bowker DM, Lamoureux RE, Stokes J, Litcher-Kelly L, Galipeau N, Yaworsky A, et al. Informing a priori sample size estimation in qualitative concept elicitation interview studies for clinical outcome assessment instrument development. Value Health. 2018;21(7):839–42.CrossRefPubMed Turner-Bowker DM, Lamoureux RE, Stokes J, Litcher-Kelly L, Galipeau N, Yaworsky A, et al. Informing a priori sample size estimation in qualitative concept elicitation interview studies for clinical outcome assessment instrument development. Value Health. 2018;21(7):839–42.CrossRefPubMed
30.
go back to reference Assouly P, Reygagne P. Lichen planopilaris: update on diagnosis and treatment. Semin Cutan Med Surg. 2009;28(1):3–10.CrossRefPubMed Assouly P, Reygagne P. Lichen planopilaris: update on diagnosis and treatment. Semin Cutan Med Surg. 2009;28(1):3–10.CrossRefPubMed
31.
go back to reference Boch K, Langan EA, Kridin K, Zillikens D, Ludwig RJ, Bieber K. Lichen planus. Front Med. 2021;8:737813.CrossRef Boch K, Langan EA, Kridin K, Zillikens D, Ludwig RJ, Bieber K. Lichen planus. Front Med. 2021;8:737813.CrossRef
32.
go back to reference Harries MJ, Sinclair RD, MacDonald-Hull S, Whiting DA, Griffiths CEM, Paus R. Management of primary cicatricial alopecias: options for treatment. Br J Dermatol. 2008;159(1):1–22.CrossRefPubMed Harries MJ, Sinclair RD, MacDonald-Hull S, Whiting DA, Griffiths CEM, Paus R. Management of primary cicatricial alopecias: options for treatment. Br J Dermatol. 2008;159(1):1–22.CrossRefPubMed
33.
go back to reference Heath CR, Usatine RP. Central centrifugal cicatrical alopecia. J Fam Pract. 2022;71(3):E13–4.PubMed Heath CR, Usatine RP. Central centrifugal cicatrical alopecia. J Fam Pract. 2022;71(3):E13–4.PubMed
34.
go back to reference Camacho-Alonso F, López-Jornet P, Bermejo-Fenoll A. Gingival involvement of oral lichen planus. J Periodontol. 2007;78(4):640–4.CrossRefPubMed Camacho-Alonso F, López-Jornet P, Bermejo-Fenoll A. Gingival involvement of oral lichen planus. J Periodontol. 2007;78(4):640–4.CrossRefPubMed
35.
go back to reference Wiriyakijja P, Porter S, Fedele S, Hodgson T, McMillan R, Shephard M, et al. Health-related quality of life and its associated predictors in patients with oral lichen planus: a cross-sectional study. Int Dent J. 2021;71(2):140–52.CrossRefPubMedCentral Wiriyakijja P, Porter S, Fedele S, Hodgson T, McMillan R, Shephard M, et al. Health-related quality of life and its associated predictors in patients with oral lichen planus: a cross-sectional study. Int Dent J. 2021;71(2):140–52.CrossRefPubMedCentral
36.
go back to reference Radwan-Oczko M, Zwyrtek E, Owczarek JE, Szcześniak D. Psychopathological profile and quality of life of patients with oral lichen planus. J Appl Oral Sci. 2018;26: e20170146.CrossRefPubMedPubMedCentral Radwan-Oczko M, Zwyrtek E, Owczarek JE, Szcześniak D. Psychopathological profile and quality of life of patients with oral lichen planus. J Appl Oral Sci. 2018;26: e20170146.CrossRefPubMedPubMedCentral
37.
go back to reference Helgesen AL, Gjersvik P, Jebsen P, Kirschner R, Tanbo T. Vaginal involvement in genital erosive lichen planus. Acta Obstet Gynecol Scand. 2010;89(7):966–70.CrossRefPubMed Helgesen AL, Gjersvik P, Jebsen P, Kirschner R, Tanbo T. Vaginal involvement in genital erosive lichen planus. Acta Obstet Gynecol Scand. 2010;89(7):966–70.CrossRefPubMed
38.
go back to reference Cheng H, Oakley A, Rowan D, Lamont D. Diagnostic criteria in 72 women with erosive vulvovaginal lichen planus. Australas J Dermatol. 2016;57(4):284–7.CrossRefPubMed Cheng H, Oakley A, Rowan D, Lamont D. Diagnostic criteria in 72 women with erosive vulvovaginal lichen planus. Australas J Dermatol. 2016;57(4):284–7.CrossRefPubMed
39.
go back to reference Adamo D, Ruoppo E, Leuci S, Aria M, Amato M, Mignogna MD. Sleep disturbances, anxiety and depression in patients with oral lichen planus: a case–control study. J Eur Acad Dermatol Venereol. 2015;29(2):291–7.CrossRefPubMed Adamo D, Ruoppo E, Leuci S, Aria M, Amato M, Mignogna MD. Sleep disturbances, anxiety and depression in patients with oral lichen planus: a case–control study. J Eur Acad Dermatol Venereol. 2015;29(2):291–7.CrossRefPubMed
40.
go back to reference Tamschick R, Navarini A, Strobel W, Müller S. Insomnia and other sleep disorders in dermatology patients: A questionnaire-based study with 634 patients. Clin Dermatol. 2021;39(6):996–1004.CrossRefPubMed Tamschick R, Navarini A, Strobel W, Müller S. Insomnia and other sleep disorders in dermatology patients: A questionnaire-based study with 634 patients. Clin Dermatol. 2021;39(6):996–1004.CrossRefPubMed
41.
go back to reference Food and Drug Administration. Patient-Focused Drug Development: Methods to Identify What Is Important to Patients Guidance for Industry, Food and Drug Administration Staff, and Other Stakeholders. Silver Spring, MD: US Food and Drug Administration; Feb 2022. Food and Drug Administration. Patient-Focused Drug Development: Methods to Identify What Is Important to Patients Guidance for Industry, Food and Drug Administration Staff, and Other Stakeholders. Silver Spring, MD: US Food and Drug Administration; Feb 2022.
Metadata
Title
Patient Experience of Lichen Planus: A Qualitative Exploration of Signs, Symptoms, and Health-Related Quality of Life Impacts
Authors
Aoife Mahon-Smith
Molly Clifford
Anjali Batish
Rosie Sharp
Charlotte Panter
Christel Naujoks
Eva Schruf
Nicolò Compagno
Santiago G. Moreno
Publication date
28-07-2023
Publisher
Springer Healthcare
Published in
Dermatology and Therapy / Issue 9/2023
Print ISSN: 2193-8210
Electronic ISSN: 2190-9172
DOI
https://doi.org/10.1007/s13555-023-00968-2

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