Adolescents wait longer than younger children to see pediatric rheumatologist for JIA
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Adolescents experience longer wait times to see a pediatric rheumatologist for juvenile idiopathic arthritis, compared with younger children, according to research published in the Journal of Rheumatology.
“This study was prompted by increasing awareness of the need for developmentally appropriate services for adolescents as distinct from children,” Stephanie Shoop-Worrall, PhD, and Janet McDonagh, MD, FRCP, both of the University of Manchester, in the United Kingdom, and the CLUSTER champions patient representatives, told Healio in a joint statement.
“We wanted to look at the start of that pathway and whether there is a delay in presentation of adolescents with resent-onset JIA, compared with their younger peers at pediatric rheumatology clinics, potentially due to misinterpreting the signs of JIA as ‘growing pains’ or non-specific but common complaints during adolescence, such as fatigue,” they added.
To investigate symptom duration and age upon initial presentation for JIA, Shoop-Worrall and colleagues collected data from patients presenting to pediatric rheumatology practices. The data included patient demographics, disease and medication information, and the source of the referral. Patients aged older than 11 years were asked to complete the Childhood Health Assessment Questionnaire. In children aged younger than 11 years, the child’s guardian was asked to complete the survey.
Patients were categorized into three groups based on the ages where children start preschool, primary school and senior school in the United Kingdom — younger than 5 years, 5 to 11 years, and older than 11 years, respectively. The primary outcome was the symptom duration between initial onset and presentation to a pediatric rheumatology clinic.
A total of 1,747 patients were recruited to the study, of which 1,577 were eligible for analysis. There were 536 patients aged younger than 5 years, 543 aged 5 to 11 years, and 498 aged 11 years and older.
In all, 26% of patients had their pediatric rheumatology visit within 10 weeks of symptom onset. According to the researchers, the younger patients were more likely to reach this timeframe, with 35% of the youngest group, 25% of the middle group and 17% of the oldest group being seen within 10 weeks of symptoms onset. Overall, patients in the middle group experienced 4.6-month longer wait times (95% CI, 2.9-6.3), while those in the oldest group experienced 7.1-month (95% CI, 5.3-8.8) longer wait times. The age-based differences persisted after the researchers adjusted for demographic and disease characteristics, the authors wrote.
“With a short window of opportunity to most effectively treat early JIA, it is more important than ever to diagnose and begin effective treatments as soon as possible for these adolescents,” the authors and representatives said in their joint statement. “Importantly, these young people may have felt their symptoms were overlooked or feel the weight of longer referral processes."
"Building a relationship with these young people by actively listening and engaging with them allows for a better communication pathway between patient and health care professional,” they added. “Therefore, allowing adolescents to voice and address these concerns can improve both immediate quality of life, and future confidence and engagement with health care in general.”
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