The quality of life assessment in children with juvenile idiopathic arthritis- comparison of PROMIS® generic and disease-specific cut-off points: a pilot study

ObjectivesDecreased quality of life (QoL) is a significant complication of most rheumatic conditions in adults, whereas data on health-related quality of life (HRQoL) in children with juvenile idiopathic arthritis (JIA) are limited. Patient-Reported Outcomes Measurement Information System (R) (PROMIS (R) ) instruments assessing quality of life (QoL) components can be scored using disease-specific severity thresholds. Our study aimed to compare the results of generic and one of the JIA-specific scorings regarding PROMIS (R) Pediatric Mobility, Pain Interference, and Fatigue questionnaires, introduce PROMIS (R) Pediatric Global Health 7 questionnaire as a valuable method to assess QoL specifically in patients with JIA and determine differences in self-reported QoL in juvenile idiopathic arthritis (JIA) patients and their healthy peers in the Polish population.MethodsIn this single-center cross-sectional study, four self-reported questionnaires derived from the PROMIS (R) Pediatric Item Bank (Global Health, Pain Interference, Fatigue, Mobility) were administered to 52 patients with JIA (8-17 years; mean 13.2 +/- 2.9; girls 59.6%) and 101 age-matched healthy controls. Questionnaires were scored based on generic or JIA-specific cut-off points.ResultsRegardless of the domain (PROMIS (R) Pain Interference, Fatigue, or Mobility), JIA patients assigned by generic cut-off points to a more severe outcome were classified into milder outcomes when cut-off points for JIA were used. The usefulness of the PROMIS (R) Pediatric Global Health 7 questionnaire was evidenced in children with JIA. No significant differences were found in QoL assessment between children with JIA and healthy children; however, self-reported impaired mobility was more prevalent in patients with JIA. A negative correlation was found between overall QoL and the assessment of three domains: pain, fatigue, and mobility impairment.ConclusionsOur study underscores the importance of JIA-specific scoring in clinical practice. While more research is needed to establish a single disease-specific scoring, our findings provide valuable insights into the negative influence of pain, fatigue, and mobility impairment on QoL in JIA. These results have the potential to significantly impact patient care and improve the health-related quality of life in children with JIA.