Development and initial validation of the parent acceptable symptom state in juvenile idiopathic arthritis (JIA)

Background

The parent acceptable symptom state (PASS) constitutes the symptom threshold beyond which parents consider their child' health status as satisfactory. The PASS represents an ambitious target for disease management.

Objective

To devise and validate the PASS in patients with JIA.

Methods

369 parents completed a multidimensional questionnaire (the JAMAR), including Juvenile Arthritis Functionality Scale (JAFS) (score 0–30), Pediatric Rheumatology Quality of Life (PRQL) questionnaire (score 0–30) and traditional JIA outcome measures, and stated whether they considered their children's status satisfactory or not. PASS thresholds were estimated based on parent opinion and targeting the 75^th percentile of cumulative distribution. Stepwise logistic regression was used to assess contributors to PASS. PASS was validated by analyzing proportions of patients who were judged by parent or physician in remission, flare or continued activity.

Results

72.9% of parents reported their children being in PASS (table 1).

Table 1 The PASS threshold

Conclusion

We devised the PASS for JIA. The PASS demonstrated good validity by discriminating strongly between patients in remission or active disease.