The Importance of Guiding Patients Through Online Information on VLS

In today’s digital age, patients often turn to the internet to learn more about their conditions, including vulvar lichen sclerosus (VLS). While the web offers a wealth of information, not all of it is accurate or evidence-based. Misinformation about “holistic cures” or unproven treatments for VLS is widespread and can lead patients to delay or avoid medically recommended therapies. As healthcare professionals, it is essential to guide patients in navigating online content safely and effectively.

Risks of Online Misinformation

1. Unproven "Cures" and Remedies

   • Patients may encounter claims of “natural” or “holistic” treatments, such as essential oils, herbal remedies, or homeopathic solutions, often marketed as alternatives to medically recommended therapies like clobetasol steroid cream. However, there is no scientific evidence to support these treatments, and some may worsen symptoms or cause harm (Bradford & Fischer, 2010; Krapf et al., 2020).

2. Fear and Confusion from Misleading Sources

   • Alarmist or inaccurate articles about VLS, such as exaggerated cancer risk or irreversible damage narratives, can cause unnecessary fear. While there is an elevated risk of squamous cell carcinoma in untreated cases, this risk is significantly reduced with consistent treatment and follow-up care (Günthert et al., 2012; Yıldız et al., 2020).

   • Misleading sources may also downplay the importance of long-term management, causing patients to underestimate the chronic nature of the condition.

3. Delay in Evidence-Based Care

   • Turning to unverified treatments often delays the use of clinically proven therapies, which are essential for managing symptoms and preventing complications. This delay can lead to disease progression, increased scarring, and a higher likelihood of psychological distress (Gutiérrez Ontalvilla, 2022; Günthert et al., 2012).

How Professionals Can Help Patients Navigate Online Information

1. Proactively Warn About Misinformation

   • During consultations, acknowledge that patients may search online for additional information. Gently explain that while curiosity is natural, not all sources are credible or based on medical evidence.

2. Provide Trusted Resources

   • Offer a list of reliable websites, support networks, or books to help patients learn more about VLS. Examples include resources like the Lichen Sclerosus Support Network or educational materials from your practice.

3. Address Common Myths

   • Take time to debunk common misconceptions, such as the idea that VLS can be “cured” rather than managed or that steroid creams are unsafe for long-term use. Emphasize that treatments like clobetasol have been proven safe and effective when used as directed (Krapf et al., 2020).

4. Encourage Open Communication

   • Create a judgment-free environment where patients feel comfortable discussing any treatments or advice they’ve read online. This allows you to correct misinformation and reinforce evidence-based care.

Empowering Patients Through Education

Patients empowered with accurate, science-based knowledge are better equipped to make informed decisions about their care. By proactively addressing misinformation and providing reliable resources, professionals can help patients feel confident in their treatment plans and avoid the pitfalls of unproven or harmful remedies.

References

• Bradford, J., & Fischer, G. (2010). Long-term management of vulvar lichen sclerosus in adult women. Australian and New Zealand Journal of Obstetrics and Gynaecology, 50(2), 148–152.

• Günthert, A., et al. (2012). Clinical scoring system for vulvar lichen sclerosus to standardize diagnosis and therapy. Journal of Reproductive Medicine, 57(5-6), 223–228.

• Gutiérrez Ontalvilla, P. (2022). So, I have Vulvar Lichen Sclerosus. What do I do now? Independently published.

• Krapf, J. M., et al. (2020). Vulvar lichen sclerosus: Current perspectives. International Journal of Women's Health, 12, 11–20.

• Yıldız, S., et al. (2020). Vulvar lichen sclerosus and its effects on quality of life. International Urogynecology Journal, 31(3), 481–489.