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.