Effectiveness of the online self management training ReumaUitgedaagd! for young adults with Juvenile Idiopathic Arthritis (JIA)

Like adults, young adolescents with a rheumatic disease also have to deal with
the physical and psychological consequences of having this disease. The
management of the disease is complex; young adolescents with JIA have to
develop more tools and actions to incorporate their illness in daily life, in
order to avoid complications within shorter and longer time.
Not seldom these actions intervene negatively with individual needs of the
young adolescents. The appeal on parents and their role in assisting
chronically ill children change over time as the child grows up into adulthood.
The young adolescents must be more in charge. He is encouraged to ask
questions, to take responsibility, to discuss the implications of the given
advices, to be a self manager.
For this, the young adolescent is guided at the transition outpatient clinic
which is developed in 2002 at the University Medical Hospital in Utrecht and at
the transition outpatient clinic of the Erasmus MC of Rotterdam since 2009.
Here, the young adolescent is being prepared in taking an active part in his
treatment and care process. A team of pediatricans, rheumatologists and a
clinical nurse specialist (better known as transition coordinator) focus on the
medical treatment and improving adherence.

The training is lead by expert patients - trainers, young adolescents in the
age of 20-30 years, suffering from a rheumatic disease themselves. Two
moderators (a coach of a coaching agency, a clinical specialist or a
communication advisor of the UMC Utrecht) will assist the trainers. The young
adolescent is asked to logg in at least twice a week and to join the weekly
chat. The amount of time the young adolescent spend on the training varies.
Some exercises are mandatory (reading, practicing, and reflection,
approximately 20 minutes per week) some are optional (depending on needs and
questions, approximately 10 minutes per week)

The objective of this research is to study the effectiveness of the online
zelfmanagementtraining ReumaUitgedaagd! by young adults with Juvenile
Idiopathic Arthritis (JIA) who are treated on the transition outpatient clinic
of the departments Rheumatology and Rheumatology & Clinical Immunology of the
University Medical Center Utrecht and the transition outpatient clinic of the
deparments Rheumatology of the Erasmus MC of Rotterdam.

A randomised, controlled study for 6 months with a follow up of three
measurements at T0 (before randomisation), T1 (three months after starting the
online training) and T2 (six months after starting the training). Randomisation
takes place, afther the informed consent. The controle group receives usual
care on the outpatient transition outpatient clinic of the departments
Rheumatology and Rheumatologie & Clinical Immunology of the University Medical
Center and the transition outpatient clinic of the department Rheumatology of
the Erasmus MC of Rotterdam.
The intervention group receives usual care, also at the outpatient transition
clinic, combined with the online self managementtraining ReumaUitgedaagd!

The control and intervention group will receive usual care. The intervention
group will be asked, in addition to the usual care, to follow the six weeks
online selfmanagement training. This will cost the participant in the
intervention group 120 minutes per week (on chat and exercises). In total, the
training lasts 12 hour.

After randomisation, three months and six months after starting the training,
the participant will be asked to fill in an online assessment (questionnaire)
and to answer on a text message. Time investment for each of the online
assessment will be 15 minutes; sending and answering a text message will take 8
minutes (2 minutes per day, for four days). For the whole periode, time
investment is 69 minutes. Receiving and sending the text message is free of
charge.
For both groups, measures on disease activity (DAS28) will be collected during
the regular consultation for the treatment of JIA. There will be no invasive
procedures; participating in this study is without risks.