Abstract
Juvenile idiopathic arthritis (JIA) is a disorder of the immune system with unknown cause that develops before the age of 16, affecting joints and other organs. In the majority of patients (50-70%) the disease is chronic and there is persistent disease activity, often in periods of exacerbations and remissions. Due to a chronic illness and the medication used, physical development can be influenced. Due to more intensive treatment including biologicals, the expectation at the start of this study was that the development is normal.
Young people with JIA (10 to 24 years) under treatment for JIA at UMC Utrecht have been followed for 3 years. In this thesis it is described that despite the low disease activity and intensive treatment, puberty is delayed. Furthermore, we describe that the endurance is also reduced and not improved over the 3 years.
We also describe various aspects of the transition of care, from pediatrician to adult rheumatologist. The quality of care, measured in the children's and adult settings (represented by disease activity and the use of medication including biologicals), is the same. However, there is a larger dropout of young people just prior to the transfer to the adult setting. Self management could prevent a dropout. However, this can not be increased by the use of health-related Internet (HRI) as the subjects indicated that they do not see any added value. We also describe that the outcomes of the measuring instruments used in childhood are not directly comparable with the measuring instruments in adulthood.
Follow-up research is needed to limit the effects of the disease and the medication on the development and to evaluate the long-term consequences of the delayed development. Extra attention is also required during the transition process to limit dropout, increasing self-management and measuring instruments used to measure the quality of care and transition. The problems of the adolescent with chronic diseases can be tackled in a dedicated adolescent clinic, as currently set up in the Erasmus MC in Rotterdam.
Young people with JIA (10 to 24 years) under treatment for JIA at UMC Utrecht have been followed for 3 years. In this thesis it is described that despite the low disease activity and intensive treatment, puberty is delayed. Furthermore, we describe that the endurance is also reduced and not improved over the 3 years.
We also describe various aspects of the transition of care, from pediatrician to adult rheumatologist. The quality of care, measured in the children's and adult settings (represented by disease activity and the use of medication including biologicals), is the same. However, there is a larger dropout of young people just prior to the transfer to the adult setting. Self management could prevent a dropout. However, this can not be increased by the use of health-related Internet (HRI) as the subjects indicated that they do not see any added value. We also describe that the outcomes of the measuring instruments used in childhood are not directly comparable with the measuring instruments in adulthood.
Follow-up research is needed to limit the effects of the disease and the medication on the development and to evaluate the long-term consequences of the delayed development. Extra attention is also required during the transition process to limit dropout, increasing self-management and measuring instruments used to measure the quality of care and transition. The problems of the adolescent with chronic diseases can be tackled in a dedicated adolescent clinic, as currently set up in the Erasmus MC in Rotterdam.
| Original language | English |
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| Award date | 16 Oct 2018 |
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| Print ISBNs | 978-94-6375-144-5 |
| Publication status | Published - 16 Oct 2018 |