Adherence to and knowledge of non-pharmacological manage ment in childhood-onset systemic lupus erythematosus: a real world multicenter cross-sectional study aligned with EULAR/ACR recommendations (a PReS Lupus Working Party study)
33rd European Paediatric Rheumatology Congress, Belgrade, Sırbistan, 15 - 19 Eylül 2026, ss.142, (Özet Bildiri)
- Yayın Türü: Bildiri / Özet Bildiri
- Basıldığı Şehir: Belgrade
- Basıldığı Ülke: Sırbistan
- Sayfa Sayıları: ss.142
- Açık Arşiv Koleksiyonu: AVESİS Açık Erişim Koleksiyonu
- Kocaeli Üniversitesi Adresli: Evet
Özet
Introduction Non-pharmacological interventions are an essential component of comprehensive SLE care, yet real-world data on physician counseling, patient adherence, and perceived benefit in childhood-onset SLE re main limited. Objectives To investigate the real-world use and perceived value of non-pharma cological interventions in an international multicentre cohort with cSLE. Methods To evaluate physician advice, patient-reported adherence, and patient perceived benefit regarding NPIs across eight domains in a multicentre international cSLE cohort, and to identify the largest advice–behaviour gaps. This cross-sectional multicentre study included patients with cli nician-confirmed cSLE from Turkish, Jordanian, and Italian. Clinical and survey data were collected using an identical 97-variable case report form. Disease activity was assessed using SLEDAI-2K, PGA, PtGA, and fatigue VAS. Results A total of 163 patients were included (Türkiye, 77.3%; Jordan, 12.9%; Italy, 9.8%). The cohort was predominantly female (82.7%), with a medi an age at last visit of 15.0 years [13.6–17.3], a median age at diagnosis of 12.6 years [11.3–14.1], and a median disease duration of 1.8 years [1.3 3.8]. Median SLEDAI-2K decreased from 12 [7–18] at diagnosis to 2 [0–6] at last visit, and median PGA, PtGA, and fatigue VAS were each 1 [0–4]. Physician advice was most frequent for sun/UV protection (93.9%), supplements (77.9%), smoking avoidance (69.3%), healthy diet (62.2%; international cohort only), cold/Raynaud protection (58.7%), regular exercise (51.5%), psychological support (41.1%), and patient educa tion (18.9%; international cohort only). Patient-reported adherence was highest for sun protection (88.3%), smoking avoidance (86.6%), and supplements (81%), but lower for psychological support (42.3%), exercise (33.1%), and educational activities (10.8%). Perceived benefit followed a similar pattern, peaking for sun protection (86.5%) and low est for educational interventions (39.2%). Sunscreen use was common (90.8%), whereas physical barriers (long sleeves, hats, UV-protective clothing) were less frequent. Vitamin D was the predominant supple ment (83.4%), and walking was the most reported activity (51.5%). Only 19.3% were currently receiving psychological support, and 11% had joined a lupus support group, yet 90.8% agreed that physician provided information had a positive impact on disease management. Conclusion In this multicentre cSLE cohort, NPIs were commonly discussed and perceived as beneficial, particularly sun protection and supplement use. However, regular exercise and psychological support remained under-recommended and underused, highlighting modifiable targets for structured, culturally adapted NPI counseling. Disclosure of interest None declared.