青少年特发性关节炎过渡性护理的共识：一项针对青少年、照顾者和健康专业人员的德尔菲研究。
Consensus on transition care for juvenile idiopathic arthritis: a Delphi study with youth, caregivers, and health professionals.
作者信息
Şahin Nihal, Baykal Gülcan Özomay, Açarı Ceyhun, Aydın Pinar Özge Avar, Baba Özge, Bağlan Esra, Bakkaloğlu Sevcan, Bakırcı Sibel, Bilginer Yelda, Bozkaya Burcu Yücel, Çağlayan Şengül, Çakan Mustafa, Çakmak Figen, Coşkuner Taner, Demir Ferhat, Demirkan Fatma Gül, Doğantan Şeyda, Dündar Hatice Adıgüzel, Ersözlü Emine Duygu, Gücenmez Sercan, Gürler Oğuz, İşgüder Rana, Küçük Adem, Kalyoncu Mukaddes, Kılıç Levent, Kılıç Sara Şebnem, Kısaoğlu Hakan, Kısaarslan Ayşenur Paç, Kızıldağ Zehra, Kurtuluş Duygu, Özdel Semanur, Öztürk Kübra, Şenol Pelin, Tanatar Ayşe, Taşkın Sema Nur, Kuru Fatma Tuncer, Türkuçar Serkan, Ulu Kadir, Ünsal Erbil, Yazıcı Ayten, Cefle Ayşe, Yıldırım Deniz Gezgin, Yüksel Selçuk, Kasapçopur Özgür, Özen Seza, Ayaz Nuray Aktay, Sönmez Hafize Emine, Sözeri Betül
机构信息
Department of Pediatric Rheumatology, Faculty of Medicine, Kocaeli University, Kocaeli, Turkey.
Department of Pediatric Rheumatology, University of Health Sciences, Ümraniye Research and Training Hospital, Istanbul, Turkey.
出版信息
Pediatr Rheumatol Online J. 2024 Dec 18;22(1):105. doi: 10.1186/s12969-024-01047-2.
BACKGROUND
The field of transitional care for chronic conditions in adolescents, notably juvenile idiopathic arthritis (JIA), is rapidly growing. Transitioning these patients to adult healthcare systems presents significant challenges in practical implementation. Consequently, it would be appropriate for each country to develop a transition program tailored to its specific infrastructure. To pursue this goal, a Delphi study was conducted to identify the key components of transitional care in JIA.
METHODS
Three panels and two rounds were held consisting of adolescents and young adults, parents, and clinicians (pediatric or adult rheumatologists). As a result, feedback on acceptance of the key statements of transitional care was obtained using the Delphi method.
RESULTS
Out of 102 contacted, 88 (86.3%) participants responded to the Round 1 survey, which included 48 clinicians, 20 youths, and 20 parents. In Round 2, the number of clinicians dropped to 29, while the number of youths and parents remained constant. Based on expert opinions, 29 statements were selected for the first round. Statements that received ≥ 70% approval in the first round advanced to the next round. Sixteen statements did not achieve ≥ 70% approval. Of the remaining, 12 were reviewed in the second round, while four were excluded.
CONCLUSION
Although consensus has been reached on the basic transitional care issues for JIA patients, several issues still need to be agreed upon. Acceptance and applicability of the final 20-item checklist in clinical practice are critical for advancing JIA transition care in Turkey.
背景
青少年慢性病的过渡性照护领域，尤其是青少年特发性关节炎（JIA），正在迅速发展。将这些患者过渡到成人医疗保健系统在实际实施中面临重大挑战。因此，每个国家制定适合其特定基础设施的过渡计划是合适的。为了实现这一目标，开展了一项德尔菲研究以确定JIA过渡性照护的关键组成部分。
方法
由青少年和青年、家长以及临床医生（儿科或成人风湿病学家）组成了三个小组并进行了两轮讨论。结果，使用德尔菲法获得了关于过渡性照护关键陈述认可度的反馈。
结果
在联系的102人中，88人（86.3%）回复了第一轮调查，其中包括48名临床医生、20名青年和20名家长。在第二轮中，临床医生的数量降至29人，而青年和家长的数量保持不变。根据专家意见，第一轮选择了29条陈述。在第一轮中获得≥70%认可的陈述进入下一轮。16条陈述未达到≥70%的认可。其余陈述中，12条在第二轮中进行了审查，4条被排除。
结论
虽然已就JIA患者的基本过渡性照护问题达成共识，但仍有几个问题需要达成一致。最终20项清单在临床实践中的认可度和适用性对于推进土耳其的JIA过渡性照护至关重要。
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