Lichen Sclerosus Top 10

    1. What is the best way to prevent and manage anatomical changes caused by lichen sclerosus?  [Anatomical changes includes fusion, altered shape of the genitals and scarring.]
    2. What is the best way to diagnose lichen sclerosus (diagnostic criteria)?  [Diagnostic criteria may include assessing clinical features (visible signs), taking a biopsy (skin sample) or doing tests (e.g. blood tests).  The criteria may also include indicators of disease severity.  Necessity of biopsy and adverse effects from biopsy may also be investigated.]
    3. What surgical treatments should be offered for lichen sclerosus?  [Surgical treatments include (but are not limited to) laser, platelet-rich plasma or lipofilling (fat transfer).  These treatments can be used in the management of scarring, anatomical changes or symptoms associated with lichen sclerosus.  When should surgical treatments be offered and what are the long-term outcomes?]
    4. Are there effective topical treatments other than topical steroids in the treatment of lichen sclerosus?  [This includes what should be done when topical steroids fail.  'Other topical treatments' may include (but are not limited to) topical calcineurin inhibitors such as tacrolimus and pimecrolimus.]
    5. What is the risk of developing cancer in patients with lichen sclerosus?  [This includes being able to identify those at greatest risk and whether certain treatments increase or lower/reduce the risk of cancer.]
    6. Which aspects of lichen sclerosus should be measured to assess response to treatment?
    7. Can lichen sclerosus be prevented from occurring and what are the trigger factors?  [Trigger factors include both factors responsible for development of lichen sclerosus and for its flare ups.  These may include (but are not limited to) irritation from clothing/chemicals/urine, trauma, environmental factors, drugs and medications.]
    8. Is it necessary to continue treatment for patients with lichen sclerosus who do not have any symptoms and/or signs of disease activity?  [Patients without symptoms includes those who are in remission after treatment, as well as those who have asymptomatic disease.  This includes follow up arrangements such as frequency (how often), duration (how long) and by whom (which health professional)?]
    9. What is the impact on quality of life?  [Quality of life includes effect of day to day living, psychological health and sexual relationships.  This includes how psychological or social support can be best used to help people with lichen sclerosus.]
    10. Does the disease course of lichen sclerosus differ in boys and girls, adult males and females?  [This includes whether lichen sclerosus can remit completely.]

The following questions were also discussed and put in order of priority at the workshop:

    1. Are tablets or injection medications that dampen the immune system effective in treating lichen sclerosus?  [This may include (but is not limited to) medications such as methotrexate, biologic treatments, low dose naltrexone.]
    2. What is the best topical steroid regime for treating a flare and maintaining remission in lichen sclerosus?  [This includes steroid strength, site of application, duration and frequency.  What is the long-term safety of applying steroids to the skin in lichen sclerosus?]
    3. Is there a role for complementary therapies in the management of lichen sclerosus?  [Complementary therapies may include (but are not limited to) homeopathic remedies, acupuncture, vitamin supplements or natural products.]
    4. How best can knowledge and awareness of lichen sclerosus be increased?  [This includes healthcare professionals, patients, public and professional bodies.]
    5. What role do hormones have in causing or influencing the severity of lichen sclerosus?  ['Hormones' can be during menopause, throughout the menstrual cycle, during pregnancy. This includes whether hormone treatments have a role in the management of lichen sclerosus.]
    6. Are there any lifestyle changes that can help in the management of lichen sclerosus?  [This includes genital hygiene, sex life, and day-to-day activities.]
    7. Is lichen sclerosus in women and children an autoimmune condition?  [Should patients be screened for other autoimmune conditions?]
    8. Is lichen sclerosus in women and children caused or linked to medical conditions other than autoimmune conditions?
    9. What is the genetic link for the development of lichen sclerosus?
    10. What role does diet have in causing or influencing the severity of lichen sclerosus?  [This includes whether there is a role for dietary changes in the management of the condition.  'Diet' may include (but is not limited to) eating sugar, being deficient or intolerant of certain nutrients.]