https://orcid.org/0000-0003-4971-0639
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Abstract
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.
Conclusion
The development of transitional care requires that pediatricians and adult rheumatologists work together to listen to the needs of patients and their families.
Conflict of interest
Tokyo Medical and Dental University (TMDU) received unrestricted research grants for Department of Lifetime Clinical Immunology from AbbVie GK, Ayumi Pharmaceutical Corporation, Chugai Pharmaceutical Co., Ltd., CSL Behring K.K., Japan Blood Products Organization, Nippon Kayaku Co., Ltd., UCB Japan Co. Ltd., Asahikasei Pharmaceutical Corporation., with which TMDU paid the salary of Masaaki Mori. Takumi Matsumoto declare no conflicts of interest associated with this manuscript.