Session Type: ACR Poster Session C
Session Time: 9:00AM-11:00AM
Background/Purpose: Medication requirements (MedReq) and medication side effects (MedSE) were found to be top priorities by patients, parents and clinicians in describing the course of the disease in children with juvenile idiopathic arthritis (JIA) in a previous study. There are no validated scales to measure these constructs in JIA. The aim of this study was to get input from patients, parents and clinicians to develop MedReq and MedSE scales in JIA.
Methods: We developed MedReq and MedSE scales, based on data available in the Research in Arthritis in Canadian Children-Outcomes cohort, and convened focus groups of youth with JIA (n=3), parents of children with JIA (n=3), and pediatric rheumatology clinicians (2 pediatric rheumatologists, 1 nurse) to evaluate the draft scales (Table). The draft MedReq scale was an ordered 11-level scale from 0=no medications to 10= Biologic, DMARD and systemic corticosteroids, with or without other medications. The MedSE scale was an 11-level scale from 0=no side effects to 10= Side-effect resulting in death or disability. Each of the proposed 11 levels for each scale was printed onto a Q card and participants were asked to rank the cards, without knowledge of the proposed order. Participants then viewed the rankings, and discussed reasons for their rankings. They could change their ranking if wanted and open discussions about JIA medications and medication side effects followed. Notes were recorded by a research assistant at each group, and data was summarized.
Results: Overall there was excellent agreement on ranking of the extreme levels of the scales (0,10) with substantial differences in the 6-9 ranks in the MedReq scale and the 3-6 ranks in the MedSE scale. MedReq scale values were changed to rank joint injection with a lower value than daily NSAID therapy. Patients own experience with side effects of prednisone and methotrexate influenced their ranking on the MedReq scale. Participants also pointed out that medication frequency has an impact on the perceived “intensity” of treatment. The MedSE scale based on the number and frequency of side-effects was said not to reflect the “real importance” of a side effect. Participants felt that future MedSE data collection must include measures of severity and impact of the side effects on daily living; information that was not available in the current data set. Additional descriptors were proposed for prednisone side-effects and inconveniences of injections.
Conclusion: Parents and patients were highly engaged and provided unique insights to the research team beyond the task they were asked to complete. The draft MedReq scale was overall well received but required weighting adjustments. Patients, parents and clinicians believe a MedSE scale should focus on the global severity and impact of experienced side-effects on daily living rather than number and frequency of side-effects.
TABLE: Proposed MedReq and MedSE items and ranking
|MedReq Items||Item score||MedSE Items|
|No treatment at this visit||0||No side effects|
|Anti-inflammatory med only||1||One side effect occurring rarely|
|Intra-articular corticosteroid only||2||One side effect occurring some of the time|
|Anti-inflammatory med and intra-articular corticosteroid||3||Two side effects occurring rarely|
|DMARD only||4||Two side effects occurring some of the time|
|DMARD with anti-inflammatory and intra-articular corticosteroid||5||One side effect occurring 50% or more of the time|
|Multiple DMARDs||6||Two side effects occurring 50% or more of the time|
|Multiple DMARDS with anti-inflammatory med and intra-articular corticosteroid||7||Three side effects occurring 50% or more of the time|
|DMARD and systemic corticosteroid||8||More than 3 side effects present more than 50% of the time|
|Biologic and DMARD||9||Side effect requiring in-hospital treatment|
|Biologic, DMARD, systemic corticosteroid, with or without other medications||10||Side effect resulting in death or disability|
To cite this abstract in AMA style:Tucker LB, Shiff N, Benseler S, Berard R, Jurencak R, Loughin T, Guzman J, Henrey A. Scoring Medication Requirements and Side-Effects in Juvenile Idiopathic Arthritis: Perspectives of Patients, Parents and Clinicians [abstract]. Arthritis Rheumatol. 2015; 67 (suppl 10). https://acrabstracts.org/abstract/scoring-medication-requirements-and-side-effects-in-juvenile-idiopathic-arthritis-perspectives-of-patients-parents-and-clinicians/. Accessed May 11, 2021.
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