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Towards a Standardized Program of Transitional Care for Adolescents with Juvenile Idiopathic Arthritis for Turkey: a National Survey Study

PEDIATRIC RHEUMATOLOGY(2024)

University of Health Sciences | Kocaeli University | Inönü University | Tekirdağ State Hospital | Karadeniz Technical University Faculty of Medicine | Etlik State Hospital | Gazi University | Antalya State Hospital | Hacettepe University | Samsun Research and Training Hospital | Zeynep Kamil Research and Training Hospital | Başakşehir Çam and Sakura State Hospital | Acıbadem Hospital | Istanbul University | Mersin City Hospital | Behçet Uz Research and Training Hospital | Adana City Research and Training Hospital | Izmir Atatürk Research and Training Hospital | Medikal Park Hospital | Dokuz Eylül University | Konya Selçuk University | Uludağ University | Kayseri City Hospital | Erciyes University | Umraniye Training and Research Hospital | Göztepe Research and Training Hospital | Eskişehir City Hospital | Osmaniye State Hospital | Pamukkale University | Onsekiz Mart University | Istanbul University-Cerrahpaşa

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Abstract
Background Juvenile idiopathic arthritis (JIA) is a prevalent childhood chronic arthritis, often persisting into adulthood. Effective transitional care becomes crucial as these patients transition from pediatric to adult healthcare systems. Despite the concept of transitional care being recognized, its real-world implementation remains inadequately explored. This study aims to evaluate the thoughts and practices of healthcare providers regarding transitional care for JIA patients. Methods A cross-sectional survey was conducted among pediatric and adult rheumatologists in Turkey. Based on the American Academy of Pediatrics’ six core elements of transitional care, the survey included 86 questions. The respondents’ demographic data, attitudes towards transitional care, and practical implementation were assessed. Results The survey included 48 rheumatologists, with 43.7% having a transition clinic. The main barriers to establishing transition programs were the absence of adult rheumatologists, lack of time, and financial constraints. Only 23.8% had a multidisciplinary team for transition care. Participants agreed on the importance of coordination and cooperation between pediatric and adult healthcare services. The timing of the transition process varied, with no consensus on when to initiate or complete it. Participants advocated for validated questionnaires adapted to local conditions to assess transition readiness. Conclusions The study sheds light on the challenges and perspectives surrounding transitional care for JIA patients in Turkey. Despite recognized needs and intentions, practical implementation remains limited due to various barriers. Cultural factors and resource constraints affect the transition process. While acknowledging the existing shortcomings, the research serves as a ground for further efforts to improve transitional care and ensure better outcomes for JIA patients transitioning into adulthood.
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Key words
Adolescent,Arthritis,Juvenile,Chronic disease,Transition to adult care
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要点】:本研究通过土耳其儿科和成人风湿病学家的问卷调查,探讨了青少年特发性关节炎患者过渡期护理的现状、挑战及观点,旨在为土耳其制定标准化的过渡期护理方案。

方法】:采用横断面调查方法,对土耳其的儿科和成人风湿病学家进行了基于美国儿科学会提出的过渡期护理六大核心要素的问卷调研。

实验】:研究通过问卷调查收集数据,共48名风湿病学家参与,结果显示43.7%的受访者设有过渡期诊所,主要障碍包括缺乏成人风湿病学家、时间不足和财务限制,仅有23.8%拥有跨学科团队进行过渡期护理。参与者对儿科与成人医疗服务之间的协调和合作的重要性达成共识,但对过渡过程的开始和完成时机意见不一,建议采用适应本地条件的验证问卷来评估过渡期准备情况。