Effectiveness of an online self management training for young adults with Juvenile Idiopathic Arthritis

Like adults, young adults 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.

To improve self-management skills, an online self-management training is developed. 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). In this study the effectiveness of the online program is being studied.

The objective of this research is to study the effectiveness of the online self- managementtraining ReumaUitgedaagd! by young adults with Juvenile Idiopathic Arthritis (JIA) who are treated at 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.

Before randomisation (T0, after three months (T1) and six months (T2).The participant will be asked to fill in online assessments (questionnaires) and to answer text messages.

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.