The long-term consequences of vulvar lichen sclerosus in adult women who were diagnosed in childhood or adolescence

Vulvar Lichen Sclerosus is a chronic skin disease with clinical manifestations
include itching, pain, bleeding, permanent loss of vulvar architecture and
restrictions in daily activities. The estimated prevalence in girls is at least
1:900. The majority of juvenile cases, according to the literature, do not
resolve at puberty. Several studies have addressed the quality of life,
self-image and the sexual well-being of adult women with vulvar lichen
sclerosus, showing a negative effect. These aspects have not been
systematically addressed in the population of women who had developed the
disease as juveniles.
Through the national pathology database of the Netherlands (PALGA) a database
search was performed which found that in the Netherlands in the period
1991-2015 more than 300 women aged <=18 were given a histological diagnosis of
vulvar lichen sclerosus. At present over 90% of these women are now aged 16
years or older. By tracing these women and questioning them, often many years
after diagnosis, insight can be gained in the possible repercussions of
juvenile vulvar lichen sclerosus in adulthood, avoiding recall bias. The
results may help clinicians in counseling and treatment of these girls and
women.

The goal of this study is to assess the repercussions of juvenile vulvar lichen
sclerosus as an adult, and to improve care after the diagnosis of JVLS has been
made.

This is a descriptive study in which the subjects fill in standard
questionnaires on dermatological conditions, quality of life and sexuality,
augmented with questions relating to their obstetric and relevant medical
history.

Participants in the online questionnaires who have stated to be willing to
participate in further studies will be invited for a single interview and
non-invasive physical examination in the Erasmus MC. Informed consent will
again be requested beforehand. In the in-depth interview the experience of
having been diagnosed with JVLS will be discussed.

There are no risks associated with participation. Subjects may experience being
confronted with the previously made diagnosis of vulvar lichen sclerosus as
somewhat of a burden.