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Adult patients with a history of juvenile idiopathic arthritis (JIA) showed poorer health-related quality of life decades later, compared with individuals who were healthy as children -- even if they were in clinical remission, reported researchers in Norway.
Thirty years after initial diagnosis, 47% of JIA patients had physical limitations. JIA patients also had lower physical component scores then on the Medical Outcome Study 36-Item Short Form (SF-36) than controls, with a mean score of 48.5 versus 55.2 (P<0.001). This lower physical component score persisted for both JIA patients with signs of active disease (mean 43.8) as well as those in clinical remission off medication (mean 52.0).
"The severity and course of JIA are highly variable and unpredictable," Anita Tollisen, RN, MNSc, of Oslo University Hospital and colleagues wrote in Arthritis Care & Research. "This study, with its longitudinal perspective of a representative cohort, adds important information to the scarce data on long-term, patient-reported outcomes in JIA."
The researchers followed 176 Norwegian JIA patients, assessing them at the 15-year, 23-year, and 30-year mark. At the 30-year follow-up, patients were compared to 90 controls matched for age and gender, who were recruited randomly from the National Registry in Oslo and the surrounding county of Akershus. About 75% of both groups were women, mean age 37.
All patients with active disease, or who had been using anti-rheumatic medication for a minimum of 15 years after disease onset, had clinical examinations at the 30-year follow-up. The researchers assessed disease activity at follow-up using the Juvenile Arthritis Disease Activity Score (cJADAS-3) which included the number of active joints, a physician's assessment with a visual analogue scale (VAS) ranging from 0 (no disease activity) to 10 (severe disease activity), and the patient's global assessment of overall well being with a VAS that ranged from 0 (doing very well) to 10 (doing very poorly).
Patients completed questionnaires at the 30-year follow-up, detailing demographic information including employment status and the highest level of formal education. They also completed surveys for the Health Assessment Questionnaire Disability Index (HAQ-DI), which included eight sections measuring different areas of disability ranging from 0 (no difficulty) to 3 (unable to do). The final score was the average of the eight sections, with 0 indicating no disability.
The researchers supplemented the HAQ-DI with a patient's global assessment of overall well being (which was included in the cJADAS-3 score) and assessment of pain intensity measured from 0 (no pain) to 10 (worst possible pain). Based on a previous study of adolescents with JIA, the researchers categorized pain scores as 0 (no pain); >0 to 3 (mild pain); >3 to 7 (moderate pain), and >7 (severe pain).
Health-related quality of life was assessed with the Medical Outcome Study 36-item Short Form (SF-36), which covered broad areas of health in eight subscales ranging from 0 to 100, with higher scores indicating better health. The subscales were aggregated into a physical component summary (PCS) and a mental component summary (MCS), each standardized to a mean value of 50.
The matched controls from the general population also completed a health assessment questionnaire and SF-36 at the time of the JIA patients' 30-year follow-up.
At 30 years:
- 47% of JIA patients had physical limitations (HAQ-DI > 0), including 3% with severe disability (HAQ-DI >1.5)
- JIA patients had lower physical component scores on the SF-36 than controls (mean 48.5 versus 55.2, P<0.001). Physical component scores worsened significantly between the 15 and 30-year follow-ups
- JIA patients scored worse than controls on all SF-36 subscales (P≤0.01), except mental health
- 31% of JIA patients with active disease reported moderate to severe pain (VAS pain >3), compared to 11% who were in clinical remission off medication (P=0.001)
- Academic achievements were similar between JIA patients and controls, but vocational achievements varied. Fewer adults with JIA held full time jobs
- The strongest correlates to JIA patients' quality of life were physical disabilities, pain, fatigue, well being, and whether they were receiving disability or social living allowance (P<0.01–0.025)
These factors appeared evident even before the 30-year mark. "In our study, lower physical health related quality of life was predicted by physical limitations, fatigue and low well being at 15-year follow-up," the authors observed.
The researchers pointed out that changes in self-reported outcomes might have been influenced by patients' gradual adaption to their situation over time. Additionally, people with mild functional limitations could have had normal HAQ-DI scores due to possible ceiling limitations.
They also noted that patients in their cohort were diagnosed 30 years ago, before the initiation of biologic therapy, and only 26% of these patients used methotrexate at the 15-year follow-up. They suggested that further longitudinal studies were needed to explore the effects of new treatment regimens over time.
The project was supported by the Norwegian Foundation for Health and Rehabilitation.