Background/Purpose: Global assessment scores are increasing important in assessing disease activity by physicians and patients/parents (PGAmd, PGApatient/parent). The purpose of this study was to determine and characterize the discordance between these assessments JIA patients and to distinguish which patient and disease characteristics contribute to this discordance.

Methods: Patients in this study were part of the Pediatric Rheumatology-Care & Outcomes Improvement Network (PR-COIN) and data collected from the registry. Patient and disease characteristics were collected including PGAmd and PGApatient/parent scores (each on a 21-point visual analog scale from 0-10) from 202 established JIA patients at Stanford Children’s Health, ages 2-18. PGA discordance was calculated as [PGApatient] – [PGAmd], could range from -10 to 10, and was classified as positive, negative, or none. No discordance was defined as agreement within 1 point. Negative discordance was defined as the patient’s PGA being underrated by >1 point compared to the MDs, whereas positive discordance was the reverse. Discordance was “marked” if the difference was greater than three. Validated instruments were administered to specific age groups: 2-4, 5-7, 8-12, and 13-18. Descriptive statistics were calculated and logistic regression used to evaluate the association between the discordance category and the patient/disease characteristics for all positive and then all negative discordance, each with no discordance as the reference. We also compared MD and parent PGA scores (198 pairs), as well as patient-parent agreement (147 pairs).

Results:  138 (68.3%) patients were female with a mean (SD) age of 11.4y (4.5) and disease duration of 4.3y (3.8). Oligoarticular (31.7%), rheumatoid factor (RF) negative polyarticular (24.3%), and enthesitis-related arthritis (ERA) (17.8%) were the most common JIA subtypes. For physician-patient pairs, 82 (54%) had no discordance, 54 (36%) had positive/marked positive discordance, and 15 (10%) had negative/marked negative discordance. The results were similar for physician-parent discordance. When patient and parent responses were compared, there was greater concordance (69% agreement) than compared to MD-patient (54%) and MD-parent (65%). After age and sex adjustment, pain, morning stiffness, and elevated CHAQ scores were associated with increased odds of positive discordance. Patients with RF negative polyarticular and ERA had lower odds of negative discordance when compared to patients with oligoarticular disease in the MD-patient comparison and with increased odds of positive discordance in the MD-parent comparison.

Conclusion: It is important to understand what patients and parents perceive as important to their disease status and health outcomes. Discordance was seen in approximately 50% of MD-patient and MD-parent comparisons with the majority of the discordance being positive/marked positive (78% of MD-patient and MD-parent discordant pairs). Pain, the presence of morning stiffness, and higher CHAQ scores were found to be statistically significantly associated with positive discordance.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/discordance-between-physician-patient-and-parent-disease-assessment-scores-in-juvenile-idiopathic-arthritis/