Questionnaire survey on transitional care for patients with juvenile idiopathic arthritis (JIA) and families

Objectives: To understand the awareness of transitional care in patients with JIA and their families. Methods: A questionnaire survey on transitional care was conducted among patients with JIA during their transitional period who were attending the pediatric rheumatology of our university and the members of parents' association of JIA (the Asunaro-kai). Results: 57.1% of patients and 35.9% of their parents did not know the word 'transitional care'. Approximately half of them did not have the opportunity to discuss transition or transfer to adult rheumatology. 61.2% of patients and 78.6% of their parents were worried about transition or transfer to adult rheumatology, and their biggest concern was about building trust with a new doctor. Approximately half of them wished to transfer to adult rheumatology after establishing a period of consultation with both pediatric and adult rheumatology. With regard to the timing of transfer, the majority of them wanted to consult with their doctors regardless of their age. The information they wanted to know was the prognosis of the disease itself, the medical system after adulthood, and data on pregnancy and childbirth. Conclusions: The development of transitional care requires that pediatricians and adult rheumatologists work together to listen to the needs of patients and their families.