Utility of patient-reported outcomes for pulmonary symptoms and sleep disturbance and impairment in children with systemic juvenile idiopathic arthritis
Authors' conclusion
Children with SJIA and lung problems had higher scores on the CCHMC Lung Symptom Survey; however, these measures did not discriminate between SJIA-LD and other pulmonary conditions such as asthma. Based on PROMIS measures, a majority of children with SJIA had sleep disturbance and impairment, regardless of steroid use or presence of lung disease.
Study context
- Population
- Parents/guardians of sJIA patients ≤ 18 years providing proxy-reports
- Participants
- 139 responses
- Exposure
- sJIA with lung disease vs sJIA without lung disease
- Any lung diseasen = 57
- Interstitial lung disease (ILD)/pulmonary alveolar proteinosis (PAP)/pulmonary artery hypertension (PAH)n = 20
- Outcome
- CCHMC Lung Symptom Survey total score
Methodological detailsparent/guardian proxy-report survey, recruitment via Cincinnati Children's Hospital Medical Center (CCHMC) JIA Registry, Systemic JIA Foundation and systemic juvenile idiopathic arthritis (SJIA) Facebook Group
- Parent/guardian proxy-report survey
- Recruitment via CCHMC JIA Registry, Systemic JIA Foundation and SJIA Facebook Group
Main finding
As reported in the abstract
Full survey and individual questions distinguished ILD/PAP/PAH from those without: AUC
> 0.7
Observational data: associations, not effects.
Further findings
Sleep disturbance and impairment (Patient-Reported Outcomes Measurement Information System (PROMIS))
- Some level of sleep disturbance
- n = 71/139 = 51.1%
- Sleep impairment
- 53.2% (n = 74)
- Moderate to severe sleep impairment and/or disturbance
- 48%
- Regardless of presence or absence of lung disease
Original publication
Utility of patient-reported outcomes for pulmonary symptoms and sleep disturbance and impairment in children with systemic juvenile idiopathic arthritis. Pediatr Rheumatol Online J. Published 15 July 2025. doi:10.
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