Patients’ and parents’ satisfaction to improve patient care in JIA: factors determining acceptable symptom state measured with JAMAR


 
 
 To identify factors associated with patients’ and parents’ reported satisfaction in juvenile idiopathic arthritis (JIA), measured with the juvenile arthritis child and parent acceptable symptom state (JA-CASS and JA-PASS, respectively).
 
 
 
 A prospective cohort of 239 JIA patients and 238 parents in a tertiary centre who completed the juvenile arthritis multidimensional assessment report (JAMAR) was analysed cross-sectionally. Primary outcome was positive JA-CASS and JA-PASS, respectively. Items of the JAMAR, as well as JIA subtype, demographics and disease activity parameters were analyzed in univariate analysis. A multivariable logistic regression analysis was used to build models explaining the variance of the primary outcome as dependent variable.
 
 
 
 141 (59.0%) of 239 patients and 149 (62.6%) of 238 parents were satisfied with their or their child’s current condition. For patients, determinants in the final model were a shorter duration of morning stiffness (p= 0.001), a lower age at disease onset (p= 0.044), a longer disease duration (p= 0.009) and higher rating of the patient’s well-being measured on a visual analogue scale (VAS) (p= 0.004). For parents, determinants were the current state of disease activity (current state of persistent activity p= 0.002, relapse p< 0.005), problems at school (p= 0.002) and the items regarding quality of life (QoL) (p= 0.005).
 
 
 
 Our data highlight the importance of patients’ and parents’ opinion in the evaluation of disease activity and support their integration into the shared decision-making in daily clinical practice to improve the quality of medical care.
