Exploring pediatric onset Still’s disease patient journey and parental perceptions in Türkiye through a survey
Authors' conclusion
This survey of the PoSD patient journey in Türkiye identified several areas of improvement for better disease management.
Study context
- Population
- Patients (<21 years) with pediatric onset Still's disease (pediatric onset Still’s disease (PoSD)) or their parents, at pediatric rheumatology clinic visits in Türkiye, January–May 202410 children and 29 parents completed survey
- Participants
- 39 patients
- Outcome
- PoSD patient journey and parental perceptions (descriptive)
Methodological details42-question survey, descriptive analysis
- 42-question survey
- Descriptive analysis
Main finding
As reported in the abstract
- Persistent fever as initial manifestation
- 84.6%
- Swollen joints and rash as initial manifestations
- 64.1% each
- Diagnosed with PoSD at initial visit
- 0
- Misdiagnosed with other inflammatory conditions
- 15.4%
- Misdiagnosed with infections
- 12.8%
- Median diagnostic delay, months
- 1 (1-4)
- Receiving biologics at time of survey
- 21 (53.8%)
- Compliant with biologic treatment
- 19
- Used biologics in past
- 7 (17.9%)
- PoSD substantially affected psychological well-being
- 33.3%
- PoSD substantially affected daily tasks
- 13%
- School-age children who missed school due to PoSD
- 15 of 26
- School days missed per year, mean ± SD
- 17.7 ± 15.9
- Parents who had not heard of PoSD at diagnosis
- 90%
- Parents who hardly accepted the diagnosis
- 28%
- Main concern: PoSD worsening in future
- 68.9%
- Primary expectation: cure
- 82.1%
- Information source: treating physicians
- 96.6%
- Information source: internet
- 72.4%
- Information source: other patient relatives
- 20.7%
Observational data: associations, not effects.
Original publication
Exploring pediatric onset Still’s disease patient journey and parental perceptions in Türkiye through a survey. Pediatr Rheumatol Online J. Published 14 October 2025. doi:10.
Composed by AI from the published abstract and checked against it. How Briefs are made →