Physical Functioning, Pain, and Health-Related Quality of Life in Adults With Juvenile Idiopathic Arthritis: A Longitudinal 30-Year Followup Study

Arthritis Care Res (Hoboken). 2018 May;70(5):741-749. doi: 10.1002/acr.23327. Epub 2018 Mar 7.


Objective: To describe physical functioning, pain, and health-related quality of life (HRQoL) in adults with juvenile idiopathic arthritis (JIA), investigate changes over time, and identify predictors of poorer HRQoL after 30 years of disease.

Methods: Patients (n = 176) clinically examined after 15 years were reassessed using the Health Assessment Questionnaire disability index (HAQ DI), the visual analog scale pain subscale (VAS pain), and the Medical Outcomes Study Short Form 36 (SF-36) after 23 years and 30 years. Patients with signs of active disease after a minimum of 15 years were clinically examined again at 30 years. Patients were compared to matched controls.

Results: At the 30-year followup, 82 patients (47%) had HAQ DI scores >0, and the median VAS pain score in patients was 0.6 (range 0-10). Patients had lower SF-36 physical component summary (PCS) scores compared with controls (P < 0.001), and this was evident for patients both with and without clinical remission (P ≤ 0.01). No group differences were found in SF-36 mental component summary scores. Patients also scored worse than controls on all SF-36 subscales (P ≤ 0.01) except mental health. PCS scores worsened significantly between the 15- and 30-year followup time points (P = 0.001). Worse HAQ DI, VAS pain, and patient's global assessment of well-being scores, and receiving disability/social living allowance at 30 years, were correlated with lower PCS scores. Worse HAQ DI, patient's global assessment of well-being, and VAS fatigue scores at 15-year followup predicted lower PCS scores at 30-year followup.

Conclusion: JIA had a detrimental effect on physical HRQoL as measured by the PCS of the SF-36. The strongest correlates were physical disability, pain, fatigue, well-being, and receiving disability/social living allowance.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Adult
  • Arthritis, Juvenile / complications
  • Arthritis, Juvenile / physiopathology*
  • Arthritis, Juvenile / psychology
  • Female
  • Follow-Up Studies
  • Humans
  • Longitudinal Studies
  • Male
  • Pain / etiology
  • Quality of Life