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


- candidate number18310
- NTR NumberNTR4679
- ISRCTNISRCTN no longer applicable
- Date ISRCTN created
- date ISRCTN requested
- Date Registered NTR8-jul-2014
- Secondary IDsMETC UMC Utrecht NL38074.041.11
- Public TitleEffectiveness of an online self management training for young adults with Juvenile Idiopathic Arthritis
- Scientific TitleEffectiveness of an online self management straining for young adults with Juvenile Idiopathic Arthritis
- ACRONYM
- hypothesisThe 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.
- Healt Condition(s) or Problem(s) studiedJuvenile idiopathic arthritis (JIA), Selfmanagement
- Inclusion criteriaYoung adults with Juvenile Idiopathic Artritis, diagnosed by a pediatrician or rheumatologist, age 16-25 years old
- Exclusion criteria - young adults who are nog able to read and write in the Dutch language
- young adults who have no access to the internet
- young adults who have not a mobile phone
- young adults who have participated earlier in a online self managementtraining
- mec approval receivedyes
- multicenter trialyes
- randomisedyes
- masking/blindingNone
- controlActive
- groupParallel
- Type2 or more arms, randomized
- Studytypeintervention
- planned startdate 1-feb-2012
- planned closingdate1-jul-2015
- Target number of participants72
- InterventionsThe 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.
- Primary outcomeSelf-efficacy
- Secondary outcomeself management, quality of life, functionality, disease activity, costs, absent from work or school, adherence with the Ehealth application and content of the Ehealth application.
- TimepointsBefore 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.
- Trial web sitewww.reumauitgedaagd.nl
- statusopen: patient inclusion
- CONTACT FOR PUBLIC QUERIESMSc Judy Ammerlaan
- CONTACT for SCIENTIFIC QUERIESMSc Judy Ammerlaan
- Sponsor/Initiator University Medical Center Utrecht (UMCU)
- Funding
(Source(s) of Monetary or Material Support)
University Medical Center Utrecht (UMCU)
- Publications
- Brief summaryLike 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.
- Main changes (audit trail)
- RECORD8-jul-2014 - 10-aug-2014


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