Scoring Medication Requirements and Side-Effects in Juvenile Idiopathic Arthritis: Perspectives of Patients, Parents and Clinicians

Lori B. Tucker¹, Natalie Shiff², Susanne Benseler³, Roberta Berard⁴, Roman Jurencak⁵, Thomas Loughin⁶, Jaime Guzman⁷ and Andrew Henrey⁶, ¹Rheumatology, BC Children's Hospital, Vancouver, BC, Canada, ²Pediatric Rheumatology, University of Saskatchewan, Saskatoon, SK, Canada, ³Pediatrics, University of Calgary, Toronto, ON, Canada, ⁴Children's Hospital of Western Ontario, London, ON, Canada, ⁵University of Ottawa, Ottawa, ON, Canada, ⁶Statistics and Actuarial Science, Simon Fraser University, Burnaby, BC, Canada, ⁷Rheumatology, Division of Rheumatology, BC Children's Hospital, Vancouver, BC, Canada

Meeting: 2015 ACR/ARHP Annual Meeting

Date of first publication: September 29, 2015

Keywords: Juvenile idiopathic arthritis-enthesitis (ERA)

Session Information

Date: Tuesday, November 10, 2015

Title: Pediatric Rheumatology - Clinical and Therapeutic Aspects Posters (ACR): Imaging and Novel Clinical Interventions

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

Disclosure: L. B. Tucker, None; N. Shiff, None; S. Benseler, None; R. Berard, None; R. Jurencak, None; T. Loughin, None; J. Guzman, None; A. Henrey, None.

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 .

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