Survey analysis of patient satisfaction and sexual issues in the management of vulvar lichen sclerosus

Survey analysis of patient satisfaction and sexual issues in the management of vulvar lichen sclerosus | Research Square window.SnipcartSettings = { analytics: { enabled: false } }; (function() { var accessVector = localStorage.getItem('access_vector') || ''; window.dataLayer = window.dataLayer || []; if (accessVector) { window.dataLayer.push({ user: { profile: { profileInfo: { snid: accessVector } } } }); } })(); (function(w,d,s,l,i){w[l]=w[l]||[];w[l].push({'gtm.start':new Date().getTime(),event:'gtm.js'});var f=d.getElementsByTagName(s)[0],j=d.createElement(s),dl=l!='dataLayer'?'&l='+l:'';j.async=true;j.src='https://www.googletagmanager.com/gtm.js?id='+i+dl;f.parentNode.insertBefore(j,f);})(window,document,'script','dataLayer','GTM-K279D39R'); Browse Preprints In Review Journals COVID-19 Preprints AJE Video Bytes Research Tools Research Promotion AJE Professional Editing AJE Rubriq About Preprint Platform In Review Editorial Policies Our Team Advisory Board Help Center Sign In Submit a Preprint Cite Share Download PDF Research Article Survey analysis of patient satisfaction and sexual issues in the management of vulvar lichen sclerosus Philipp Meyer-Wilmes, Julia Wittenborn, Tomáš Kupec, Rebecca Caspers, and 2 more This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-3930384/v1 This work is licensed under a CC BY 4.0 License Status: Published Journal Publication published 04 May, 2024 Read the published version in Archives of Gynecology and Obstetrics → Version 1 posted 4 You are reading this latest preprint version Abstract Objective Vulvar lichen sclerosus (VLS) is an underestimated chronic disease. It can cause significant symptom burden and sexual dysfunction. This study aimed to evaluate patient satisfaction and current challenges in the management of VLS in a certified dysplasia unit, particularly during the COVID-19 pandemic. Methods This survey analyzed patients who had been diagnosed with VLS and treated at our DKG-certified dysplasia unit. The study was conducted during the COVID-19 pandemic in the Department of Gynecology and Obstetrics at the University of Aachen. The questionnaire contained 43 questions covering general treatment, diagnostic delays, psychological and sexual issues and specific questions about the COVID-19 pandemic. The questionnaire was distributed between January 2021 and September 2023. Results This study included 103 patients diagnosed with VLS who were treated at our certified dysplasia unit. Overall, 48% of the patients were satisfied with the success of the therapy. Most participants reported psychological problems (36.8%), fear of cancer (53.3%), or sexual restrictions (53.3%). Among the patients, 38% were bothered by the regular application of topical cortisone. However, 72% were willing to undergo treatment for more than 24 months. The COVID-19 outbreak in March 2020 had a significant negative impact on general VLS care from the patient’s perspective (3,83/5 before vs. 3,67/5 after; p = 0.046). There was a general request for booklets to inform and educate patients about their disease. Furthermore, the respondents demanded a telephone hotline to answer the questions and wished for follow-up visits via e-mail to cope better with their current situation. Conclusion This study highlights the need for more effective treatments for VLS and an increased awareness of psychological and sexual distress. To ensure patient well-being and satisfaction, it is imperative to offer individualized care in a team of specialists from various disciplines. Vulvar lichen sclerosus satisfaction COVID-19 pandemic psychological distress sexual function Figures Figure 1 Figure 2 Figure 3 Figure 4 What does this study adds to the clinical work The survey analysis of vulvar lichen sclerosus patients in a DKG-certified dysplasia unit highlights the need for more effective treatments for VLS and increased awareness of psychological and sexual distress. 1. Introduction Vulvar lichen sclerosus (VLS) is a chronic inflammatory disease of the skin and mucous membranes that is characterized by a lichenoid inflammatory pattern. This inflammatory reaction leads to fibrosis and scarring during disease and can lead to loss of function [ 1 ]. Women and girls commonly report itching, burning pain, and anal or genital bleeding due to fissuring of affected tissues. Women also report painful, less pleasurable, or even impossible sexual intercourse because of stenosis and scarring. Emotional distress and mental health problems can result from symptoms such as itching, pain, tearing and sexual dysfunction [ 2 ]. VLS is typically diagnosed based on its characteristic clinical appearance. In typical cases, biopsy may not be required; however, many clinicians prefer to perform biopsy at presentation. Biopsy should be performed if the clinical diagnosis is uncertain, dysplasia/carcinoma is suspected, or first-line treatment fails. VLS is commonly misdiagnosed as Candida albicans vulvitis or postmenopausal atrophy. This may lead to a diagnostic delay of up to five years [ 3 ]. Furthermore, missed or delayed diagnoses can lead to disease progression and reduced treatment response [ 4 ]. Topical steroids are the recommended first-line treatment, with 60–70% of patients achieving complete remission [ 5 , 6 ]. Alternatively, topical calcineurin inhibitors and complementary procedures such as photodynamic therapy have been described [ 7 ]. Surgical treatment is indicated when stenosis and associated functional limitations occur. In addition to conservative and surgical treatment approaches, the use of lasers for VLS has also been described [ 8 , 9 ]. Studies have shown that VLS therapy can effectively reduce symptoms. However, overall patient satisfaction is moderate [ 5 , 10 , 11 ]. One-third of patients with VLS experience a significant reduction in health-related quality of life [ 10 ], and some women with VLS may continue to experience sexual dysfunction and less satisfying sexual activity even with treatment [ 12 ]. The coronavirus disease 2019 (COVID-19) pandemic began in December 2019 in Wuhan. Isolation and social distancing dominated interpersonal relations and led to psychological disorders in many people [ 13 ]. Public health organizations decided to reduce access to outpatient clinics. In addition, the number of surgical procedures was limited owing to the pandemic. Most patients with chronic diseases have no opportunity for follow-up. Some patients refused to attend follow-up visits due to fear of the pandemic. According to the results of the current research, the COVID-19 pandemic has led to changes in sexual behavior, function, and satisfaction, with several studies indicating an increase in sexual dysfunction and a decrease in sexual activity [ 14 , 15 ]. Furthermore, access to photodynamic therapy for lichen sclerosus was limited during the COVID-19 pandemic [ 16 ]. The primary objective of this patient survey was to evaluate the current state of care in a DKG-certified dysplasia unit. The survey aimed to address concerns, sexual distress, and requirements for effective therapy with the goal of increasing understanding and improving future therapy. In addition, as the survey was conducted during the COVID-19 pandemic, it aims to assess the clinical impact of the pandemic on patients. 2. Methods This survey analysis included patients with vulvar lichen sclerosus who were diagnosed and treated in our DKG-certified dysplasia unit of the Department of Gynecology and Obstetrics at the University Hospital Aachen. A multiple-choice questionnaire with 43 items was developed covering general care, treatment satisfaction, diagnostic delay, specific symptoms, psychological and sexual issues. Additional questions were asked regarding accessibility, treatment and satisfaction during the COVID-19 pandemic. The questionnaire was distributed to patients attending the consultation at our dysplasia unit and was provided either as a paper version or online in Microsoft Forms. This unit is a referral consultation for particularly difficult cases in which specialists in private practice have the opportunity to obtain a specialized second opinion. Vulvoscopy was performed by experienced and highly qualified AG-CPC-certified personnel. Patients were treated strictly in accordance with the current European guidelines for lichen sclerosus and were also offered a vulvoscopic checkup once a year [ 17 ]. This anonymous survey was conducted between January 2021 and September 2023 and was performed in accordance with the principles of the Declaration of Helsinki. Approval was granted by the Ethics Committee of the RWTH Aachen University Faculty of Medicine, Germany in December 2021 (EK 438 − 21). Informed consent was obtained from all individual participants included in the study. Data extraction and descriptive analyses were performed using SPSS for Macintosh, version 27.0 (IBM Corp., Armonk, NY, USA). The Wilcoxon rank test was used to compare the categorical variables. Differences were considered to be statistically significant at p < 0.05. 3. Results A total of 103 patients participated in this survey. Almost half of the patients (48%) were older than 61 years when they completed the survey. Biopsies of the suspicious vulvar regions were part of the diagnosis in 34.0% of the patients, but clinical impressions and symptoms were more common in 45.6% of the patients (Table 1 ). The most common symptoms were itching (76.7%), burning (62.1%), changes in vulval appearance (46.7%), and pain during sexual intercourse (44.7%) (Fig. 1 ). Table 1 Patient characteristics Characteristic N (%) Age (years) 18–30 8 (7.7) 31–41 9 (8.7) 42–50 11 (10.7) 51–60 24 (23.3 > 61 49 (47.6) Type of VLS diagnosis Biopsy 35 (34.0) Clinical 47 (45.6) Preliminary suspected diagnosis 21 (20.4) Time from the beginning of symptoms to presentation to the doctor (months) Directly 36 (35.0) 3–6 29 (28.2) 6–12 8 (7.8) 12–24 4 (3.9) > 24 24 (23.3) Missing 2 (1.9) VLS, vulval lichen sclerosus A total of 48.0% of patients were satisfied with the success of the therapy and the majority of respondents reported having psychological problems (36.8%), fear of cancer (53.3%), or sexual restrictions (53.3%). Among patients who underwent VLS treatment, 75.7% were expected to avoid cancer, whereas 58.3% were expected to have an increased chance of being cured. Additionally, 48.5% of the patients were expected to improve their quality of life through VLS treatment. Regarding their disease and previous therapy, 61.2% of the patients considered it difficult to manage their fear of cancer. Overall, 65.0% of the patients felt involved in their treatment decisions. In one-fourth of the patients (25.0%), it took more than 24 months from the beginning of the typical lichenoid symptoms to the patient´s presentation to the doctor and likewise from the presentation to the doctor until the correct diagnosis was obtained. Referral to the certified dysplasia unit was faster, with only 11.0% of patients waiting for more than 24 months and 39.0% being referred immediately after diagnosis. Of the patients, 21.3% had comorbidities such as arterial hypertension, 34.0% had thyroid disease, and 39.9% had no comorbidities. From the patient’s perspective, the main causes of the disease were stress (39.8%) and disorders of the immune system (33.8%). Respondents indicated that the outbreak of the COVID-19 pandemic in March 2020 had a significant negative impact on the general care of VLS. Before the pandemic, the average satisfaction with care was 3.83/5; after the outbreak, it was 3.67/5 (p = 0.046; Fig. 3 ). However, the COVID-19 pandemic has not negatively affected access to physicians, confidence in, or psychological distress among. More than one-third 38.0% of the patients were bothered by the regular application of topical cortisone; however, 72.0% were willing to be treated for more than 24 months. To influence the progression of their illness favorably, 76.7% of the participants followed doctors' instructions precisely, 41.8% tried to think positively, and 31.1% lived more consciously and took time for themselves. There was a general request for booklets to inform and educate the patients about their disease (Fig. 4 ). Respondents demanded a telephone hotline to answer disease specific questions and wished follow-up visits via e-mail to better cope with their current situation. 4. Discussion Vulvar lichen sclerosus is a chronic disease that affects women in varying degrees throughout their lives. It is associated with varying levels of satisfaction and psychological and sexual impairment. In general, patients diagnosed with lichen sclerosus reported a moderate level of satisfaction with their treatment, especially in terms of symptom alleviation. Our study showed that half of the patients (48.0%) were satisfied with the success of the therapy. A cross-sectional study revealed that despite undergoing treatment, approximately one-third of patients with LS experience a significant decline in health-related quality of life (HRQoL) [ 18 ]. According to our analysis of 25.0% of patients, it took more than 24 months from the beginning of the typical lichenoid symptoms to the patient´s presentation to the doctor and likewise from the patient´s presentation to the doctor until the correct diagnosis was obtained. In contrast, referrals to our certified dysplasia unit were faster. Indeed, 39% of the patients were diagnosed immediately by a specialist, whereas only 11.0% waited for more than 24 months. Delays in diagnosing VLS can lead to complications such as scarring or cancer development [ 19 ]. Faster access to physicians specializing in VLS care reduces diagnostic delays and enables patients to comprehend and manage their condition more effectively, leading to improved compliance. It is crucial for the general population to be educated about the existence of VLS to raise awareness of its signs and symptoms. Improved disease management and patient satisfaction can be achieved by enabling early diagnosis and improving patient understanding and treatment adherence. An important aspect of managing chronic genital diseases is addressing their impact on mental health. Patients often experience anxiety, depression, and stress associated with their disease, which can adversely affect their quality of life and treatment outcome. VLS has been shown to have a significant impact on the mental and psychosocial health of women [ 20 , 21 ]. In our study, 61.2% of the patients considered it difficult to manage their fear of cancer. The most common symptoms were itching (76.7%), burning (62.1%), changes in vulvar appearance (46.7%), and pain during sexual intercourse (44.7%). More than half of patients experienced psychological distress and sexual restrictions. The correlation between the negative influence of vulvar lichen sclerosus on female genital self-image and sexual arousal, orgasm, and satisfaction rate is concerning. Individuals also report a significantly lower frequency of sexual activity, lower levels of satisfaction with sexual activity, depression, and poor quality of life [ 12 ]. More than half of the patients in our study experienced psychological distress, fear of cancer, or sexual restrictions. Patients with these conditions have significant advantages in terms of interdisciplinary care and therapy tailored to their individual needs. Owing to the COVID-19 pandemic, mental health issues have arisen and there have been great societal concerns regarding fewer care options for nononcological diseases [ 22 ]. A continuously stressful situation during the COVID-19 pandemic may increase the risk of disease progression. Treatment algorithms for vulvar cancer have been modified during the COVID-19 pandemic. VIN 2 and 3 qualifying for resection can be operated on with a delay of 10–12 weeks [ 23 ]. An increased risk of developing squamous cell carcinoma in VLS has been described [ 24 ] [ 25 ]. One study revealed that the 20-year risk of squamous cell carcinoma in women with VLS was 6.7% [ 26 ]. Follow-up visits are necessary to monitor vulvar LS progression. From the patient’s perspective, our analysis showed that the COVID-19 outbreak had a significant negative impact on the overall care of patients (3.83/5 before vs. 3.67/5 after; p = 0.046). Access to VLS specialists, confidence in physicians or psychological distress remained stable during the COVID-19 pandemic. This might be due to the well-structured patient care in our certified dysplasia unit, even before the outbreak of the pandemic. This study has several limitations, including its retrospective design and small number of enrolled patients. Considering the rarity of VLS and the limited observational period, particularly during the COVID-19 pandemic, the number of patients enrolled in this study is noteworthy. Another limitation of this study is its single-center focus on a highly specialized dysplasia unit. On the other hand, the analysis provides a comprehensive overview of treatment and its challenges in a large specialized and certified center in the region. Future studies should include primary and secondary care centers in their analyses to better reflect the current landscape of care across all levels and to provide a more comprehensive understanding of VLS. In conclusion, this survey highlights the need to improve patient satisfaction with successful VLS treatments. The survey respondents acknowledged that healthcare providers should provide more information on their websites and brochures. They also agreed that there should be more emphasis on sexual distress. Individualized care and multidisciplinary teams are essential to address each patient’s unique needs. Declarations Conflict of interest: The authors declare that there are no relevant conflicts of interest. Author contributions Dr. med. Philipp Meyer-Wilmes: Project development, data collection, manuscript writing, data interpretation, final approval. References Lee A, Fischer G (2018) Diagnosis and Treatment of Vulvar Lichen Sclerosus: An Update for Dermatologists. Am J Clin Dermatol 19:695–706. https://doi.org/10.1007/s40257-018-0364-7 Krapf JM, Mitchell L, Holton MA, Goldstein AT (2020) Vulvar Lichen Sclerosus: Current Perspectives. Int J Womens Health 12:11–20. https://doi.org/10.2147/IJWH.S191200 Virgili A, Borghi A, Cazzaniga S et al (2017) New insights into potential risk factors and associations in genital lichen sclerosus: Data from a multicentre Italian study on 729 consecutive cases. 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Ginekol Pol. https://doi.org/10.5603/GP.a2023.0066 Kirtschig G, Krinberger M, Kreuter A et al (2023) EUROGUIDERM GUIDELINE LICHEN SCLEROSUS. 1–128 https://www.lichensclerosus.de/custom/data/ckeditorfiles/Fachliteratur/Guideline/cljzpzm6y1hquyxjr38g3gtf4lichensclerosusevidencereport.pdf Accessed 28 January 2024 van Cranenburgh OD, Nijland SBW, Lindeboom R et al (2017) Patients with lichen sclerosus experience moderate satisfaction with treatment and impairment of quality of life: results of a cross-sectional study. Br J Dermatol 176:1508–1515. https://doi.org/10.1111/bjd.15125 Lee A, Bradford J, Fischer G (2015) Long-term Management of Adult Vulvar Lichen Sclerosus. JAMA Dermatology 151:1061. https://doi.org/10.1001/jamadermatol.2015.0643 Shasi PB, Chapman HT, Evans DTP, Jaleel H (2010) Psychological and psychiatric morbidity in lichen sclerosus in a cohort recruited from a genitourinary medicine clinic. Int J STD AIDS 21:17–18. https://doi.org/10.1258/ijsa.2009.009102 Fan R, Leasure AC, Maisha FI et al (2022) Depression and Anxiety in Patients With Lichen Sclerosus. JAMA Dermatology 158:953. https://doi.org/10.1001/jamadermatol.2022.1964 Cullen W, Gulati G, Kelly BD (2020) Mental health in the COVID-19 pandemic. QJM Int J Med 113:311–312. https://doi.org/10.1093/qjmed/hcaa110 Alkatout I, Karimi-Zarchi M, Allahqoli L (2020) Gynecological cancers and the global COVID-19 pandemic. J Turkish Ger Gynecol Assoc 21:272–278. https://doi.org/10.4274/jtgga.galenos.2020.2020.0119 Micheletti L, Preti M, Radici G et al (2016) Vulvar Lichen Sclerosus and Neoplastic Transformation: A Retrospective Study of 976 Cases. J Low Genit Tract Dis 20:180–183. https://doi.org/10.1097/LGT.0000000000000186 Singh N, Ghatage P (2020) Etiology, Clinical Features, and Diagnosis of Vulvar Lichen Sclerosus: A Scoping Review. Obstet Gynecol Int 2020:7480754. https://doi.org/10.1155/2020/7480754 Bleeker MCG, Visser PJ, Overbeek LIH et al (2016) Lichen Sclerosus: Incidence and Risk of Vulvar Squamous Cell Carcinoma. Cancer Epidemiol Biomarkers Prev 25:1224–1230. https://doi.org/10.1158/1055-9965.EPI-16-0019 Cite Share Download PDF Status: Published Journal Publication published 04 May, 2024 Read the published version in Archives of Gynecology and Obstetrics → Version 1 posted Reviewers agreed at journal 09 Feb, 2024 Reviewers invited by journal 09 Feb, 2024 Editor assigned by journal 04 Feb, 2024 First submitted to journal 29 Jan, 2024 You are reading this latest preprint version Research Square lets you share your work early, gain feedback from the community, and start making changes to your manuscript prior to peer review in a journal. As a division of Research Square Company, we’re committed to making research communication faster, fairer, and more useful. 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Also discoverable on Platform About Our Team In Review Editorial Policies Advisory Board Help Center Resources Author Services Accessibility API Access RSS feed Manage Cookie Preferences © Research Square 2026 | ISSN 2693-5015 (online) Privacy Policy Terms of Service Do Not Sell My Personal Information {"props":{"pageProps":{"initialData":{"identity":"rs-3930384","acceptedTermsAndConditions":true,"allowDirectSubmit":false,"archivedVersions":[],"articleType":"Research Article","associatedPublications":[],"authors":[{"id":272206666,"identity":"115b43bf-f0ee-4e1f-84a4-045947652e7d","order_by":0,"name":"Philipp 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1","display":"","copyAsset":false,"role":"figure","size":19833,"visible":true,"origin":"","legend":"\u003cp\u003ePlease specify your clinical complaints that led to a diagnosis of sclerosus.\u003c/p\u003e","description":"","filename":"1.png","url":"https://assets-eu.researchsquare.com/files/rs-3930384/v1/46c159fd05af1be026578c82.png"},{"id":51081587,"identity":"4f43b14e-c3bb-44a4-bd86-1910c4f8292f","added_by":"auto","created_at":"2024-02-13 19:17:43","extension":"png","order_by":2,"title":"Figure 2","display":"","copyAsset":false,"role":"figure","size":15967,"visible":true,"origin":"","legend":"\u003cp\u003eWhat stresses you most because of lichen sclerosus?\u003c/p\u003e","description":"","filename":"2.png","url":"https://assets-eu.researchsquare.com/files/rs-3930384/v1/d0aa3b102e69a5d1b1c9df47.png"},{"id":51081588,"identity":"c2394608-2781-4474-bbc4-d53bdb8eef2a","added_by":"auto","created_at":"2024-02-13 19:17:43","extension":"png","order_by":3,"title":"Figure 3","display":"","copyAsset":false,"role":"figure","size":15433,"visible":true,"origin":"","legend":"\u003cp\u003eAssessment of care before and after the outbreak of the COVID-19 pandemic. 1= bad, 5 = very good\u003c/p\u003e","description":"","filename":"3.png","url":"https://assets-eu.researchsquare.com/files/rs-3930384/v1/9a0b42e9a7d9eec894f963ff.png"},{"id":51081589,"identity":"773b04ad-6aaa-4052-9bca-d679b3971767","added_by":"auto","created_at":"2024-02-13 19:17:43","extension":"png","order_by":4,"title":"Figure 4","display":"","copyAsset":false,"role":"figure","size":16882,"visible":true,"origin":"","legend":"\u003cp\u003eQuestion: Which materials would they prefer to provide information and education about their illness?\u003c/p\u003e","description":"","filename":"4.png","url":"https://assets-eu.researchsquare.com/files/rs-3930384/v1/c37813630652c3b85a9f7f3a.png"},{"id":56042872,"identity":"b6442dc7-739a-430e-8182-ab83f305997c","added_by":"auto","created_at":"2024-05-07 20:08:34","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":346193,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-3930384/v1/a7d95e7a-486d-4d1a-a53c-c1852e0f927f.pdf"}],"financialInterests":"","formattedTitle":"Survey analysis of patient satisfaction and sexual issues in the management of vulvar lichen sclerosus","fulltext":[{"header":"What does this study adds to the clinical work","content":"\u003cp\u003eThe survey analysis of vulvar lichen sclerosus patients in a DKG-certified dysplasia unit highlights the need for more effective treatments for VLS and increased awareness of psychological and sexual distress.\u003c/p\u003e"},{"header":"1. Introduction","content":"\u003cp\u003eVulvar lichen sclerosus (VLS) is a chronic inflammatory disease of the skin and mucous membranes that is characterized by a lichenoid inflammatory pattern. This inflammatory reaction leads to fibrosis and scarring during disease and can lead to loss of function [\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e]. Women and girls commonly report itching, burning pain, and anal or genital bleeding due to fissuring of affected tissues. Women also report painful, less pleasurable, or even impossible sexual intercourse because of stenosis and scarring. Emotional distress and mental health problems can result from symptoms such as itching, pain, tearing and sexual dysfunction [\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e]. VLS is typically diagnosed based on its characteristic clinical appearance. In typical cases, biopsy may not be required; however, many clinicians prefer to perform biopsy at presentation. Biopsy should be performed if the clinical diagnosis is uncertain, dysplasia/carcinoma is suspected, or first-line treatment fails. VLS is commonly misdiagnosed as Candida albicans vulvitis or postmenopausal atrophy. This may lead to a diagnostic delay of up to five years [\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e]. Furthermore, missed or delayed diagnoses can lead to disease progression and reduced treatment response [\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eTopical steroids are the recommended first-line treatment, with 60\u0026ndash;70% of patients achieving complete remission [\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e, \u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e]. Alternatively, topical calcineurin inhibitors and complementary procedures such as photodynamic therapy have been described [\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e]. Surgical treatment is indicated when stenosis and associated functional limitations occur. In addition to conservative and surgical treatment approaches, the use of lasers for VLS has also been described [\u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e, \u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eStudies have shown that VLS therapy can effectively reduce symptoms. However, overall patient satisfaction is moderate [\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e, \u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e, \u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e]. One-third of patients with VLS experience a significant reduction in health-related quality of life [\u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e], and some women with VLS may continue to experience sexual dysfunction and less satisfying sexual activity even with treatment [\u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eThe coronavirus disease 2019 (COVID-19) pandemic began in December 2019 in Wuhan. Isolation and social distancing dominated interpersonal relations and led to psychological disorders in many people [\u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e]. Public health organizations decided to reduce access to outpatient clinics. In addition, the number of surgical procedures was limited owing to the pandemic. Most patients with chronic diseases have no opportunity for follow-up. Some patients refused to attend follow-up visits due to fear of the pandemic. According to the results of the current research, the COVID-19 pandemic has led to changes in sexual behavior, function, and satisfaction, with several studies indicating an increase in sexual dysfunction and a decrease in sexual activity [\u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e, \u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e]. Furthermore, access to photodynamic therapy for lichen sclerosus was limited during the COVID-19 pandemic [\u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e16\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eThe primary objective of this patient survey was to evaluate the current state of care in a DKG-certified dysplasia unit. The survey aimed to address concerns, sexual distress, and requirements for effective therapy with the goal of increasing understanding and improving future therapy. In addition, as the survey was conducted during the COVID-19 pandemic, it aims to assess the clinical impact of the pandemic on patients.\u003c/p\u003e"},{"header":"2. Methods","content":"\u003cp\u003eThis survey analysis included patients with vulvar lichen sclerosus who were diagnosed and treated in our DKG-certified dysplasia unit of the Department of Gynecology and Obstetrics at the University Hospital Aachen. A multiple-choice questionnaire with 43 items was developed covering general care, treatment satisfaction, diagnostic delay, specific symptoms, psychological and sexual issues. Additional questions were asked regarding accessibility, treatment and satisfaction during the COVID-19 pandemic. The questionnaire was distributed to patients attending the consultation at our dysplasia unit and was provided either as a paper version or online in Microsoft Forms. This unit is a referral consultation for particularly difficult cases in which specialists in private practice have the opportunity to obtain a specialized second opinion. Vulvoscopy was performed by experienced and highly qualified AG-CPC-certified personnel. Patients were treated strictly in accordance with the current European guidelines for lichen sclerosus and were also offered a vulvoscopic checkup once a year [\u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e]. This anonymous survey was conducted between January 2021 and September 2023 and was performed in accordance with the principles of the Declaration of Helsinki. Approval was granted by the Ethics Committee of the RWTH Aachen University Faculty of Medicine, Germany in December 2021 (EK 438\u0026thinsp;\u0026minus;\u0026thinsp;21). Informed consent was obtained from all individual participants included in the study. Data extraction and descriptive analyses were performed using SPSS for Macintosh, version 27.0 (IBM Corp., Armonk, NY, USA). The Wilcoxon rank test was used to compare the categorical variables. Differences were considered to be statistically significant at p\u0026thinsp;\u0026lt;\u0026thinsp;0.05.\u003c/p\u003e"},{"header":"3. Results","content":"\u003cp\u003eA total of 103 patients participated in this survey. Almost half of the patients (48%) were older than 61 years when they completed the survey. Biopsies of the suspicious vulvar regions were part of the diagnosis in 34.0% of the patients, but clinical impressions and symptoms were more common in 45.6% of the patients (Table\u0026nbsp;\u003cspan refid=\"Tab1\" class=\"InternalRef\"\u003e1\u003c/span\u003e). The most common symptoms were itching (76.7%), burning (62.1%), changes in vulval appearance (46.7%), and pain during sexual intercourse (44.7%) (Fig.\u0026nbsp;\u003cspan refid=\"Fig1\" class=\"InternalRef\"\u003e1\u003c/span\u003e).\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab1\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 1\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003ePatient characteristics\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"2\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"char\" char=\".\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e \u003cp\u003eCharacteristic\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c2\"\u003e \u003cp\u003eN (%)\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eAge (years)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e18\u0026ndash;30\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e8 (7.7)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e31\u0026ndash;41\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e9 (8.7)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e42\u0026ndash;50\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e11 (10.7)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e51\u0026ndash;60\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e24 (23.3\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u0026gt;\u0026thinsp;61\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e49 (47.6)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eType of VLS diagnosis\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eBiopsy\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e35 (34.0)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eClinical\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e47 (45.6)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003ePreliminary suspected diagnosis\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e21 (20.4)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eTime from the beginning of symptoms to presentation to the doctor (months)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eDirectly\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e36 (35.0)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e3\u0026ndash;6\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e29 (28.2)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e6\u0026ndash;12\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e8 (7.8)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e12\u0026ndash;24\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e4 (3.9)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u0026gt;\u0026thinsp;24\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e24 (23.3)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eMissing\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e2 (1.9)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eVLS, vulval lichen sclerosus\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003cp\u003e \u003c/p\u003e \u003cp\u003e \u003c/p\u003e \u003cp\u003eA total of 48.0% of patients were satisfied with the success of the therapy and the majority of respondents reported having psychological problems (36.8%), fear of cancer (53.3%), or sexual restrictions (53.3%). Among patients who underwent VLS treatment, 75.7% were expected to avoid cancer, whereas 58.3% were expected to have an increased chance of being cured. Additionally, 48.5% of the patients were expected to improve their quality of life through VLS treatment.\u003c/p\u003e \u003cp\u003eRegarding their disease and previous therapy, 61.2% of the patients considered it difficult to manage their fear of cancer. Overall, 65.0% of the patients felt involved in their treatment decisions. In one-fourth of the patients (25.0%), it took more than 24 months from the beginning of the typical lichenoid symptoms to the patient\u0026acute;s presentation to the doctor and likewise from the presentation to the doctor until the correct diagnosis was obtained. Referral to the certified dysplasia unit was faster, with only 11.0% of patients waiting for more than 24 months and 39.0% being referred immediately after diagnosis. Of the patients, 21.3% had comorbidities such as arterial hypertension, 34.0% had thyroid disease, and 39.9% had no comorbidities. From the patient\u0026rsquo;s perspective, the main causes of the disease were stress (39.8%) and disorders of the immune system (33.8%). Respondents indicated that the outbreak of the COVID-19 pandemic in March 2020 had a significant negative impact on the general care of VLS. Before the pandemic, the average satisfaction with care was 3.83/5; after the outbreak, it was 3.67/5 (p\u0026thinsp;=\u0026thinsp;0.046; Fig.\u0026nbsp;\u003cspan refid=\"Fig3\" class=\"InternalRef\"\u003e3\u003c/span\u003e). However, the COVID-19 pandemic has not negatively affected access to physicians, confidence in, or psychological distress among.\u003c/p\u003e \u003cp\u003e \u003c/p\u003e \u003cp\u003eMore than one-third 38.0% of the patients were bothered by the regular application of topical cortisone; however, 72.0% were willing to be treated for more than 24 months. To influence the progression of their illness favorably, 76.7% of the participants followed doctors' instructions precisely, 41.8% tried to think positively, and 31.1% lived more consciously and took time for themselves. There was a general request for booklets to inform and educate the patients about their disease (Fig.\u0026nbsp;\u003cspan refid=\"Fig4\" class=\"InternalRef\"\u003e4\u003c/span\u003e). Respondents demanded a telephone hotline to answer disease specific questions and wished follow-up visits via e-mail to better cope with their current situation.\u003c/p\u003e \u003cp\u003e \u003c/p\u003e"},{"header":"4. Discussion","content":"\u003cp\u003eVulvar lichen sclerosus is a chronic disease that affects women in varying degrees throughout their lives. It is associated with varying levels of satisfaction and psychological and sexual impairment. In general, patients diagnosed with lichen sclerosus reported a moderate level of satisfaction with their treatment, especially in terms of symptom alleviation. Our study showed that half of the patients (48.0%) were satisfied with the success of the therapy. A cross-sectional study revealed that despite undergoing treatment, approximately one-third of patients with LS experience a significant decline in health-related quality of life (HRQoL) [\u003cspan citationid=\"CR18\" class=\"CitationRef\"\u003e18\u003c/span\u003e]. According to our analysis of 25.0% of patients, it took more than 24 months from the beginning of the typical lichenoid symptoms to the patient\u0026acute;s presentation to the doctor and likewise from the patient\u0026acute;s presentation to the doctor until the correct diagnosis was obtained. In contrast, referrals to our certified dysplasia unit were faster. Indeed, 39% of the patients were diagnosed immediately by a specialist, whereas only 11.0% waited for more than 24 months. Delays in diagnosing VLS can lead to complications such as scarring or cancer development [\u003cspan citationid=\"CR19\" class=\"CitationRef\"\u003e19\u003c/span\u003e]. Faster access to physicians specializing in VLS care reduces diagnostic delays and enables patients to comprehend and manage their condition more effectively, leading to improved compliance. It is crucial for the general population to be educated about the existence of VLS to raise awareness of its signs and symptoms. Improved disease management and patient satisfaction can be achieved by enabling early diagnosis and improving patient understanding and treatment adherence.\u003c/p\u003e \u003cp\u003eAn important aspect of managing chronic genital diseases is addressing their impact on mental health. Patients often experience anxiety, depression, and stress associated with their disease, which can adversely affect their quality of life and treatment outcome. VLS has been shown to have a significant impact on the mental and psychosocial health of women [\u003cspan citationid=\"CR20\" class=\"CitationRef\"\u003e20\u003c/span\u003e, \u003cspan citationid=\"CR21\" class=\"CitationRef\"\u003e21\u003c/span\u003e]. In our study, 61.2% of the patients considered it difficult to manage their fear of cancer. The most common symptoms were itching (76.7%), burning (62.1%), changes in vulvar appearance (46.7%), and pain during sexual intercourse (44.7%). More than half of patients experienced psychological distress and sexual restrictions. The correlation between the negative influence of vulvar lichen sclerosus on female genital self-image and sexual arousal, orgasm, and satisfaction rate is concerning. Individuals also report a significantly lower frequency of sexual activity, lower levels of satisfaction with sexual activity, depression, and poor quality of life [\u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e]. More than half of the patients in our study experienced psychological distress, fear of cancer, or sexual restrictions. Patients with these conditions have significant advantages in terms of interdisciplinary care and therapy tailored to their individual needs.\u003c/p\u003e \u003cp\u003eOwing to the COVID-19 pandemic, mental health issues have arisen and there have been great societal concerns regarding fewer care options for nononcological diseases [\u003cspan citationid=\"CR22\" class=\"CitationRef\"\u003e22\u003c/span\u003e]. A continuously stressful situation during the COVID-19 pandemic may increase the risk of disease progression. Treatment algorithms for vulvar cancer have been modified during the COVID-19 pandemic. VIN 2 and 3 qualifying for resection can be operated on with a delay of 10\u0026ndash;12 weeks [\u003cspan citationid=\"CR23\" class=\"CitationRef\"\u003e23\u003c/span\u003e]. An increased risk of developing squamous cell carcinoma in VLS has been described [\u003cspan citationid=\"CR24\" class=\"CitationRef\"\u003e24\u003c/span\u003e] [\u003cspan citationid=\"CR25\" class=\"CitationRef\"\u003e25\u003c/span\u003e]. One study revealed that the 20-year risk of squamous cell carcinoma in women with VLS was 6.7% [\u003cspan citationid=\"CR26\" class=\"CitationRef\"\u003e26\u003c/span\u003e]. Follow-up visits are necessary to monitor vulvar LS progression. From the patient\u0026rsquo;s perspective, our analysis showed that the COVID-19 outbreak had a significant negative impact on the overall care of patients (3.83/5 before vs. 3.67/5 after; p\u0026thinsp;=\u0026thinsp;0.046). Access to VLS specialists, confidence in physicians or psychological distress remained stable during the COVID-19 pandemic. This might be due to the well-structured patient care in our certified dysplasia unit, even before the outbreak of the pandemic.\u003c/p\u003e \u003cp\u003eThis study has several limitations, including its retrospective design and small number of enrolled patients. Considering the rarity of VLS and the limited observational period, particularly during the COVID-19 pandemic, the number of patients enrolled in this study is noteworthy. Another limitation of this study is its single-center focus on a highly specialized dysplasia unit. On the other hand, the analysis provides a comprehensive overview of treatment and its challenges in a large specialized and certified center in the region. Future studies should include primary and secondary care centers in their analyses to better reflect the current landscape of care across all levels and to provide a more comprehensive understanding of VLS.\u003c/p\u003e \u003cp\u003eIn conclusion, this survey highlights the need to improve patient satisfaction with successful VLS treatments. The survey respondents acknowledged that healthcare providers should provide more information on their websites and brochures. They also agreed that there should be more emphasis on sexual distress. Individualized care and multidisciplinary teams are essential to address each patient\u0026rsquo;s unique needs.\u003c/p\u003e"},{"header":"Declarations","content":"\u003cp\u003e \u003cstrong\u003eConflict of interest:\u003c/strong\u003e \u003cp\u003eThe authors declare that there are no relevant conflicts of interest.\u003c/p\u003e \u003c/p\u003e\u003ch2\u003eAuthor contributions\u003c/h2\u003e \u003cp\u003eDr. med. Philipp Meyer-Wilmes: Project development, data collection, manuscript writing, data interpretation, final approval.\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\u003cli\u003e\u003cspan\u003eLee A, Fischer G (2018) Diagnosis and Treatment of Vulvar Lichen Sclerosus: An Update for Dermatologists. Am J Clin Dermatol 19:695\u0026ndash;706. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003ehttps://doi.org/10.1007/s40257-018-0364-7\u003c/span\u003e\u003cspan address=\"10.1007/s40257-018-0364-7\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eKrapf JM, Mitchell L, Holton MA, Goldstein AT (2020) Vulvar Lichen Sclerosus: Current Perspectives. 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J Low Genit Tract Dis 20:180\u0026ndash;183. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003ehttps://doi.org/10.1097/LGT.0000000000000186\u003c/span\u003e\u003cspan address=\"10.1097/LGT.0000000000000186\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eSingh N, Ghatage P (2020) Etiology, Clinical Features, and Diagnosis of Vulvar Lichen Sclerosus: A Scoping Review. Obstet Gynecol Int 2020:7480754. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003ehttps://doi.org/10.1155/2020/7480754\u003c/span\u003e\u003cspan address=\"10.1155/2020/7480754\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eBleeker MCG, Visser PJ, Overbeek LIH et al (2016) Lichen Sclerosus: Incidence and Risk of Vulvar Squamous Cell Carcinoma. Cancer Epidemiol Biomarkers Prev 25:1224\u0026ndash;1230. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003ehttps://doi.org/10.1158/1055-9965.EPI-16-0019\u003c/span\u003e\u003cspan address=\"10.1158/1055-9965.EPI-16-0019\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e\u003c/span\u003e\u003c/li\u003e\u003c/ol\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":false,"hideJournal":false,"highlight":"","institution":"","isAcceptedByJournal":true,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":true,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"archives-of-gynecology-and-obstetrics","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"arch","sideBox":"Learn more about [Archives of Gynecology and Obstetrics](https://www.springer.com/journal/404)","snPcode":"","submissionUrl":"https://www.editorialmanager.com/arch/default.aspx","title":"Archives of Gynecology and Obstetrics","twitterHandle":"","acdcEnabled":true,"dfaEnabled":true,"editorialSystem":"em","reportingPortfolio":"Springer Hybrid","inReviewEnabled":true,"inReviewRevisionsEnabled":false},"keywords":"Vulvar lichen sclerosus, satisfaction, COVID-19 pandemic, psychological distress, sexual function","lastPublishedDoi":"10.21203/rs.3.rs-3930384/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-3930384/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003ch2\u003eObjective\u003c/h2\u003e \u003cp\u003eVulvar lichen sclerosus (VLS) is an underestimated chronic disease. It can cause significant symptom burden and sexual dysfunction. This study aimed to evaluate patient satisfaction and current challenges in the management of VLS in a certified dysplasia unit, particularly during the COVID-19 pandemic.\u003c/p\u003e\u003ch2\u003eMethods\u003c/h2\u003e \u003cp\u003eThis survey analyzed patients who had been diagnosed with VLS and treated at our DKG-certified dysplasia unit. The study was conducted during the COVID-19 pandemic in the Department of Gynecology and Obstetrics at the University of Aachen. The questionnaire contained 43 questions covering general treatment, diagnostic delays, psychological and sexual issues and specific questions about the COVID-19 pandemic. The questionnaire was distributed between January 2021 and September 2023.\u003c/p\u003e\u003ch2\u003eResults\u003c/h2\u003e \u003cp\u003eThis study included 103 patients diagnosed with VLS who were treated at our certified dysplasia unit. Overall, 48% of the patients were satisfied with the success of the therapy. Most participants reported psychological problems (36.8%), fear of cancer (53.3%), or sexual restrictions (53.3%). Among the patients, 38% were bothered by the regular application of topical cortisone. However, 72% were willing to undergo treatment for more than 24 months. The COVID-19 outbreak in March 2020 had a significant negative impact on general VLS care from the patient\u0026rsquo;s perspective (3,83/5 before vs. 3,67/5 after; p\u0026thinsp;=\u0026thinsp;0.046). There was a general request for booklets to inform and educate patients about their disease. Furthermore, the respondents demanded a telephone hotline to answer the questions and wished for follow-up visits via e-mail to cope better with their current situation.\u003c/p\u003e\u003ch2\u003eConclusion\u003c/h2\u003e \u003cp\u003eThis study highlights the need for more effective treatments for VLS and an increased awareness of psychological and sexual distress. To ensure patient well-being and satisfaction, it is imperative to offer individualized care in a team of specialists from various disciplines.\u003c/p\u003e","manuscriptTitle":"Survey analysis of patient satisfaction and sexual issues in the management of vulvar lichen sclerosus","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2024-02-13 19:17:38","doi":"10.21203/rs.3.rs-3930384/v1","editorialEvents":[{"type":"communityComments","content":0},{"type":"reviewerAgreed","content":"","date":"2024-02-10T01:04:22+00:00","index":0,"fulltext":""},{"type":"reviewersInvited","content":"","date":"2024-02-09T22:12:47+00:00","index":"","fulltext":""},{"type":"editorAssigned","content":"","date":"2024-02-04T20:38:14+00:00","index":"","fulltext":""},{"type":"submitted","content":"Archives of Gynecology and Obstetrics","date":"2024-01-30T04:07:22+00:00","index":"","fulltext":""}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"archives-of-gynecology-and-obstetrics","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"arch","sideBox":"Learn more about [Archives of Gynecology and Obstetrics](https://www.springer.com/journal/404)","snPcode":"","submissionUrl":"https://www.editorialmanager.com/arch/default.aspx","title":"Archives of Gynecology and Obstetrics","twitterHandle":"","acdcEnabled":true,"dfaEnabled":true,"editorialSystem":"em","reportingPortfolio":"Springer Hybrid","inReviewEnabled":true,"inReviewRevisionsEnabled":false}}],"origin":"","ownerIdentity":"06003888-138a-424f-8afc-ef19b49e24a9","owner":[],"postedDate":"February 13th, 2024","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"published-in-journal","subjectAreas":[],"tags":[],"updatedAt":"2024-05-07T20:02:26+00:00","versionOfRecord":{"articleIdentity":"rs-3930384","link":"https://doi.org/10.1007/s00404-024-07519-w","journal":{"identity":"archives-of-gynecology-and-obstetrics","isVorOnly":false,"title":"Archives of Gynecology and Obstetrics"},"publishedOn":"2024-05-04 19:57:55","publishedOnDateReadable":"May 4th, 2024"},"versionCreatedAt":"2024-02-13 19:17:38","video":"","vorDoi":"10.1007/s00404-024-07519-w","vorDoiUrl":"https://doi.org/10.1007/s00404-024-07519-w","workflowStages":[]},"version":"v1","identity":"rs-3930384","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-3930384","identity":"rs-3930384","version":["v1"]},"buildId":"qtupq5eGEP_6zYnWcrvyt","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}