Self‐Reported Pain and Disease Symptoms Persist in Juvenile Idiopathic Arthritis Despite Treatment Advances: An Electronic Diary Study

Abstract

Objective To use electronic diaries (e-diaries) to determine whether pain, stiffness, and fatigue continue to be common, disabling symptoms in children with juvenile idiopathic arthritis (JIA) despite the use of aggressive treatments in contemporary medical management. Methods Fifty-nine children with JIA (ages 8–18 years) provided ratings of pain, stiffness, and fatigue intensity and functional limitations using a smartphone e-diary 3 times each day for 1 month. Medication information was collected via parent report and checked for accuracy by chart review. Descriptive analyses were conducted to determine typical symptom intensity, frequency, and variability. Multilevel modeling was used to analyze associations between symptoms and functional outcomes and between medication use and symptom intensity. Results Children reported moments of pain in 66% of e-diary entries. No children were entirely pain-free across the reporting period. In 31% of all e-diary entries the visual analog scale score for pain was >40 (high pain intensity), with 86% of children reporting a high level of pain at least once during the study period. The mean ratings of pain, stiffness, and fatigue intensity were in the mild-to-moderate range. Medication class was not a reliable predictor of differences in symptom intensity, even though 79% of children were prescribed a disease-modifying antirheumatic drug and 47% were prescribed a biologic agent. Moments of higher pain intensity and higher stiffness intensity were each uniquely predictive of higher concurrent functional limitations. Conclusion Self-reported pain, stiffness, and fatigue continue to be common in children with JIA, despite contemporary advances in treatment strategies, including use of biologic agents. These findings are surprisingly consistent with previous results from research using daily paper diaries in the pre-biologics era. There remains a pressing and ongoing need to optimize pain and symptom management in JIA.

Prospective Mediation Models of Sleep, Pain, and Daily Function in Children With Arthritis Using Ecological Momentary Assessment

“…4 Despite recent advances in pharmacotherapy that dramatically improve disease control in children with JIA, other electronic diary (e-diary) findings showed continued daily pain, stiffness, fatigue, and associated functional limitations. 5 We also previously demonstrated that emotion regulation is an important predictor of both pain and function in this sample. 6 Identifying other factors underlying or maintaining both pain and impaired function in JIA is necessary to guide innovations in nonpharmacological treatments.…”

Patient-reported Outcomes across Categories of Juvenile Idiopathic Arthritis

“…This highlights that these constructs are very complex and despite having access to qualitative and quantitative variables, there are still other unidentified factors that likely contribute to pain, quality of life, and physical function. The presence of fatigue and amplified musculoskeletal pain have been reported to influence PROs (30, 31), and this was not systematically recorded in our cohort. Another study suggests that patients place emphasis on being like their peers without a chronic condition and emphasize the psychosocial aspect of living with JIA (32), and these domains were not fully captured by our PROs.…”

The benefits of electronic diaries in understanding the experience of health

“…Considerable diversity has evolved over the past decade in how electronic diaries are structured, in how frequently they are completed, and in the health phenomena they are used to study. As evidenced by their use to understand sexual behaviour,4 smoking cessation5 and substance use,6 asthma management7 seizure prediction,8 psychological state and disease symptomatology in old age,9 paediatric arthritis pain,10 and emotional regulation,11 electronic diaries can be a flexible and powerful way to intimately connect to the health experiences of others.…”