Background/Purpose: Pain is one of the most frequently reported symptoms among children with Juvenile Idiopathic Arthritis (JIA), and in recent decades our understanding and assessment of pain has progressed a great deal. Although JIA pain is multi-factorial, most research to date has been concerned with the disease-related pain (e.g., physical aches).  Less research has focused on the treatment-related pain associated with JIA (e.g., injections, medical procedures and their side effects), which may be equally as prevalent and debilitating, and may affect rates of treatment adherence. This study describes the presence and severity of treatment-related pain across an international sample of children with JIA.

Methods: This research was conducted in partnership with Cassie and Friends, a parent-led organization for families of children with arthritis. Parents of children with JIA were recruited through online and social media platforms, and were eligible provided their child was under 18 years of age and on some form of JIA-related treatment. Parents (n = 221; 96% mothers) participated in an online survey, completing questions about their child’s diagnosis, treatments, and pain experiences.

Results: Based on parent report, children in this study (73% girls) had been diagnosed with a variety of JIA subtypes (36% Polyarticular Arthritis, 21% Oligoarthritis, 15% Enthesitis-Related Arthritis, 14% Systemic Arthritis, 10% Psoriatic Arthritis). Approximately 2/3 of parents reported that their child had experienced treatment pain at least once in the past month, and 1/3 of those parents reported that the pain lasted half the day or longer. The average pain intensity as a result of treatments was 2.68 [SD = 2.45, range = 0 (no pain) – 10 (worst possible pain)]. Although no differences in treatment-related pain intensity were observed across the JIA subtypes (F = .82, p = .534), Mann-Whitney U Tests revealed that children who were on disease-modifying anti-rheumatic drugs (DMARDS) and biologic agents experienced more severe treatment-related pain compared to those who were not (U = 4385.50, p = .026 and U = 3870.50, p = .008, respectively). Additionally, the more treatments a child was receiving, the greater the treatment-related pain intensity that was reported by parents (t = 3.51, b = 0.69, p = < .001). On a scale assessing parent reported confidence in managing their child’s treatment-related pain [range = 0 (not confident) – 10 (very confident)], over 2/3 of parents indicated a 5 or lower, suggesting this is an area of difficulty for many families.

Conclusion: There is growing awareness of the importance of comprehensively assessing pain in pediatric rheumatology populations, however assessing pain specific to JIA treatments is less emphasized. This study has demonstrated that treatment-related pain is prevalent, and thereby an important consideration in future research and clinical practice. In acknowledging and assessing for treatment-related pain, healthcare providers may gain insight into potential barriers to treatment adherence, and may be better informed to provide strategies to families to raise their confidence in managing their child’s treatment-related pain.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/parsing-apart-the-pain-experience-exploring-treatment-related-pain-in-juvenile-idiopathic-arthritis/