Biologic therapy through caregivers' eyes: insights from a multicenter pediatric rheumatology survey


Baser Taskin B., DOĞRU KILINÇ A., Talha Karadogan M., ÇAKMAK F., DEMİRKAN F. G., AKTAY AYAZ N.

EXPERT OPINION ON BIOLOGICAL THERAPY, cilt.25, sa.11, ss.1257-1264, 2025 (SCI-Expanded, Scopus) identifier identifier identifier

  • Yayın Türü: Makale / Tam Makale
  • Cilt numarası: 25 Sayı: 11
  • Basım Tarihi: 2025
  • Doi Numarası: 10.1080/14712598.2025.2597849
  • Dergi Adı: EXPERT OPINION ON BIOLOGICAL THERAPY
  • Derginin Tarandığı İndeksler: Science Citation Index Expanded (SCI-EXPANDED), Scopus, BIOSIS, EMBASE, MEDLINE
  • Sayfa Sayıları: ss.1257-1264
  • İstanbul Üniversitesi Adresli: Evet

Özet

BackgroundPediatric rheumatic diseases impose substantial significant physical, emotional, and social burdens. Biologic therapies have revolutionized disease management; however, few data exist exploring caregivers' lived experiences with pediatric biologic therapy.Research design and methodsA cross-sectional survey was conducted between August and October 2025 across three pediatric rheumatology centers in T & uuml;rkiye. Primary caregivers of 156 children receiving biologic disease-modifying antirheumatic drugs (bDMARDs) for >= 3 months completed structured questionnaires assessing demographics, knowledge, perceptions, emotions, treatment experiences, satisfaction, and support needs.ResultsAmong caregivers, 42% initially reported fear and 33% expressed trust or reliance upon treatment recommendation. Overall satisfaction with clinic services was high (98%), and 79% perceived marked improvement in their child's well-being and daily functioning. Perceived insufficiency of information was associated with increased fear and concern (p = 0.005). Subcutaneous, weekly regimens predominated, and mothers more often reported difficulty with administration (p = 0.042). Longer treatment duration was associated with more positive perceptions (p = 0.049), while adverse events were linked to lower perceived efficacy (p = 0.035).ConclusionCaregiver perceptions significantly affect adherence and satisfaction. Structured caregiver education and psychosocial support should be integrated into routine pediatric rheumatology practice to strengthen adherence and family-centered care.