Background/Purpose: The ACR has endorsed a core set of six measures to assess the course of JIA and the impact of treatment: active joint count, limited joint count, physician’s global assessment of disease activity, functional ability, patient/parent’s global assessment of well being and a laboratory measure of inflammation. We sought to determine the relative priority given by patients and their parents to the ACR pediatric core measures, in relation to other disease features.

Methods: Three separate study sessions consisting of focus group discussions and reciprocal interviews (participants interview each other), were conducted with youth with JIA, experienced parents and novice parents.  Participant youth (7 female, 2 male, aged 16 to 23 years old) had JIA for 2 to 12 years (1 oligo, 2 poly, 2 systemic, 2 ERA, 1 psoriatic, 1 unclassified).  Experienced parents (5 female, 5 male, 2 couples) participated 9 months to 14 years after JIA diagnosis in their child (4 oligo, 1 poly, 1 ERA, 1 psoriatic, 1 unclassified).  Novice parents (5 female, 3 male, one couple) participated 2 to 6 months after JIA diagnosis in their child (2 oligo, 1 systemic, 1 ERA, 1 psoriatic, 2 unclassified). A list of 34 clinical features often used for the monitoring of JIA in cohort studies and therapeutic trials was provided to participants. The list included the core set ACR pediatric measures and lay language definitions for all the features.  Participants were asked to add any other relevant features, and discuss the features’ relative priority in describing the course of JIA.  Focus group discussions were professionally facilitated, recorded, and transcribed. Reciprocal interview answers were reported in standard forms.  Focus group transcripts and interview answers underwent content analysis by two investigators; themes and priority rankings were discussed with all co-authors.

Results: Among core set measures, the active joint count was considered to be of high priority by parents and of medium priority by youth.  The parent’s global assessment was considered to have medium priority by parents and low priority by youth.  The limited joint count and functional ability were considered to have low priority by the three groups. The physician global assessment was not discussed to any extent or given any priority, although the concept of disease activity was considered to be important.  Laboratory measures were not discussed.  By contrast, youth and parents gave high priority to pain, quality of life, medications required to control the disease and medication side-effects.  Youth felt that visual analogue scales and standardized questionnaires were poor reflections of their experiences with JIA.  Experienced parents were particularly interested in disease flares and flare triggers.  Novice parents were still coming to terms with the emotional impact of their child’s JIA diagnosis and found the prioritizing task difficult.

Conclusion: Among the six core measures, only the number of active joints has enough relevance in the eyes of youth and parents to be considered a central feature of JIA course.  If more patient-relevant measures are desired, consideration should be given to include pain and quality of life indicators as core set measures.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/what-is-the-relative-priority-of-the-acr-pediatric-core-set-measures-for-youth-with-juvenile-idiopathic-arthritis-and-their-parents/