Pilotstudy on the online selfmanagementtraining Reuma Uitgedaagd! for young-adolescents with a rheumatic disease

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. 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. To support this care, we
recently developed, together with the Dutch Rheumatism Patient League and young
people of the transition outpatient clinic an online self management training,
which is called Reuma Uitgedaagd!

The online self management training Reuma Uitgedaagd! is followed at home,
online. The training consists of a password, protected, interactive web-based
self management instruction. For six weeks, participants (approximately 6 per
training) logg in several times. Each week, the group starts with a planned,
group chat. The weekly objective is cleared, goals are set and the participants
can practice, ask questions or do exercises like playing a game or watching a
real life story video. After the chat, the young adolescent is working through
the program by himself, on his own time at home with homework exercises. At the
discussion board, the group and the trainer may post messages. Here they may
also assist each other, offer encouragement and share tips or tricks with their
group.
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.
Being part of the online training is on a voluntary basis. 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 2
hours per week) some are optional (depending on needs and questions,
approximately 1 hour per week)

There is no online self management training yet for young adolescents with a
rheumatic disease. Primary objective of this study is the feasibility testing
of the online self managementtraining Reuma Uitgedaagd! by the young
adolescents whom participate in this training. Information of this study will
be used to adapt the online training and to prepare the randomised,
effectstudie in 2011.

a quantitative, pilot study for 5 months (inclusion of the participants, two
assessments - before and two months after finishing the training) and
analyzing the assessments).

The emotional charges for participating in this pilot study is minimal and
without risks. Participants will be asked to follow the self management
training. Before the start and two months after finishing 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 30 minutes; sending and answering a text message will take 2
minutes.Receiving and sending the text message is free of charge. De training
is an addition to the usual medical care of the rheumatic disease. There will
be no invasive procedures performed. Participation in the self management
training and the pilot study is voluntary.