Most people associate juvenile idiopathic arthritis (JIA) with a disease that affects children and adolescents. But for many, the disease doesn't stop there. New research shows that the consequences can follow patients well into adulthood, affecting both health, quality of life and risk for other diseases.
By Merethe L. Dahle, research coordinator, Section of Rheumatology, Oslo University Hospital (OUS).
New Norwegian research provides important insight into life after diagnosis
The research was conducted in collaboration between the Section for Rheumatology at OUS and the research group REMEDY, with senior researcher and consultant at OUS, Anna-Birgitte Aga, as main supervisor and Eirik Klami Kristianslund as co-supervisor.
Physician in LIS1 and PhD fellow Imane Bardan is the first author on all articles that have examined how patients with JIA fare in adulthood.
– Many people think of JIA as something you “grow out of,” but our research shows that for many, the disease has consequences well into adulthood.
– This emphasizes the need for follow-up over time, says Imane.
Dissertation in November
The studies are based on Norwegian registry data of several thousand patients and the multicenter observational study NOR-DMARD, which provides a solid and realistic picture of the situation.
Through his doctoral work, which will be completed with a public defense in November, Bardan has contributed new knowledge about how patients who have had JIA fare, long after they have become adults.
What is JIA?
Juvenile idiopathic arthritis (JIA):
- Chronic arthritis that occurs before the age of 16
- The most common rheumatic disease in children
- Can cause pain, stiffness and reduced mobility
- The course of the disease varies – some get better, others have persistent problems
- Can in some cases cause challenges even in adulthood
Lower quality of life – also in adulthood
One of the main findings is that adults with JIA report lower health-related quality of life than both the general population and patients with other rheumatic diseases, such as rheumatoid arthritis (RA).
This does not necessarily mean that everyone has a serious illness, but that many live with persistent ailments such as pain, reduced function or fatigue. Such impacts can have an impact on work, social life and mental health.
Treatment works, but challenges remain
At the same time, the research provides an important nuanced picture: Modern treatment works.
Studies from the research collaboration show that both biological drugs (TNF inhibitors) and traditional treatment with methotrexate provide good disease control in adults with JIA on a par with what is seen in patients with rheumatoid arthritis (RA).
This is encouraging, and shows for the first time that the treatment strategy is also effective for adults with JIA.
Increased risk of other diseases
Another key finding is that adults with JIA have a higher incidence of comorbidities, including cardiovascular disease, kidney disease, and other autoimmune diseases.
The study also points to increased mortality compared to the general population. At the same time, this increased risk does not appear to be related to the use of modern medications, which emphasizes that the disease itself causes a significant burden of disease – and that systematic follow-up with an eye for additional diseases should be part of routine control.
Need for better follow-up throughout life
The findings emphasize that JIA should in many cases be understood as a lifelong condition, not just a childhood disease.
Many patients need:
- close follow-up even in adulthood
- better transition from child to adult healthcare
- more holistic treatment that also addresses additional diseases
This requires collaboration across professional environments and levels in the health service.
From research to practice
The work of Bardan and colleagues demonstrates the value of close collaboration between clinical practice and research. By linking clinical data with large health registries, they have generated new knowledge that can be translated into better patient care.
The goal is not just new knowledge – but better treatment and follow-up for patients.
The way forward
The November public defense marks an important milestone in Bardan's work and a significant contribution to research on JIA in adulthood.
For patients, this means in practice a hope for more coherent follow-up, more targeted treatment and greater attention to the entire burden of disease – so that more people can achieve the best possible health and quality of life, even long after they have left the pediatric ward.
Read about her doctoral thesis here
This article is also published on the OUS website
References:
Juvenile arthritis - Oslo University Hospital HF
Clinical Pediatric Rheumatology Research Group - Oslo University Hospital HF
