PROMIS scores demonstrated the disparities between reported pain and mental health outcomes.
Adolescent patients with rheumatic diseases are likely to underreport symptoms of depression to their caregivers, according to research presented at ACR Convergence 2024, while conversely, caregivers are likely to overreport symptoms of pain.1
The Patient Reported Outcome Measures Information System (PROMIS) is validated for use across several domains—including physical ability, mental health, and social interactions—in pediatric rheumatology conditions. However, studies of nonrheumatic diseases have demonstrated discrepancies between patient and caregiver PROMIS responses, which can lead to delays in diagnosis and medical care.
In a single-center, prospective cohort study at the University of Rochester in Rochester, New York, researchers enrolled a total of 39 established adolescent patients aged 13 to 17 years and their caregivers. Within the study group, 71% of patients were girls; 44% had a diagnosis of juvenile idiopathic arthritis (JIA; 23.1% oligoarticular JIA, 41% polyarticular JIA, 3.3% enthesitis-related JIA, 2.6% undifferentiated JIA, 15.4% systemic lupus erythematosus, 2.6% Sjögren syndrome, 5.1% chronic recurrent multifocal osteomyelitis, and 2.6% linear scleroderma).
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Compared with their caregivers, adolescents had more T-scores greater than 50 within the depressive symptom domain and lower T-scores on the pain interference domain. For these 2 domains, there was a statistically significant difference between caregivers and patients (P value, 0.0116 for depressive symptoms and 0.0014 for pain interference).
No differences were noted between scores in domains for anxiety and mobility.
“We show for the first time that adolescent patients with rheumatic disease are more likely to underreport symptoms of depression to their caregivers, and caregivers overreport symptoms of pain,” the researchers wrote. “These findings suggest that there may be a disconnect between caregivers and adolescents in recognizing signs of disease-related symptoms and mental health in children with rheumatic conditions.”
Future research in a larger cohort of patients is needed “to further assess these differences,” they concluded.
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