Long term outcome of childhood onset SLE in the Netherlands

Systemic Lupus Erythematosus (SLE) is a chronic autoimmune disease with
multisystem involvement and wide heterogeneity of disease manifestations.
Childhood-onset SLE (cSLE) represents 10-20% of all SLE-cases and is a more
severe disease than adult-onset SLE. Children with SLE have higher disease
activity at diagnosis and throughout the course of disease including a higher
percentage of renal and CNS involvement, more-rapid development of damage over
time and a higher mortality rate. Indeed, the majority of cSLE patients will
have developed damage due to the disease or its treatment at the age of 20-25
years. Mortality rates have decreased significantly over the past two decades,
with 10 and 15 year survival exceeding 85%. However, with a median age of
disease onset around 12 years, this means that at the age of 22 to 27 years up
to 15% of cSLE patients have died. Dealing with the diagnosis of a lifelong,
potentially life threatening disease with an unpredictable course and use of
medication that influences life style and physical appearance is difficult, but
even more so in puberty, an already challenging time of life on its own. Only a
few small studies are available that examined the effect of cSLE on education
and work participation. An American study reported that 35% of patients with
cSLE felt that having SLE interfered with their education. At a mean age of 24
years, only 40% of adults with cSLE worked full time. In addition, most adults
with cSLE lived on relatively low incomes, with 11-23% living on full-time
disability support. Currently there is no information available regarding long
term outcome in Dutch cSLE patients.

This project aims at documenting long-term disease outcome and quality of life
of patients with cSLE in the Netherlands.

Single centre epidemiological study with optional participation in a National
biobank

Some questionnaires may be confronting for participants. During the study visit
we will inform the participant about the possibilities of psychological help
(via their own physician or via the research team) when they feel this is
necessary. For the study a single venous puncture is necessary, no other
interventions will take place. The risks of emotional stress due to the
questionnaires or the single venous puncture are limited. The additional study
burden includes the time needed for travel to Rotterdam and the duration of
the study visit (2-3 hours).