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

BACKGROUND

Pediatric 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

METHODS

A cross-sectional survey was conducted between August and October 2025 across three pediatric rheumatology centers in Türkiye. 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.

RESULTS

Among 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).

CONCLUSION

Caregiver 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.