Consensus on transition care for juvenile idiopathic arthritis: a Delphi study with youth, caregivers, and health professionals.

IF 2.8 3区 医学 Q1 PEDIATRICS Pediatric Rheumatology Pub Date : 2024-12-18 DOI:10.1186/s12969-024-01047-2
Nihal Şahin, Gülcan Özomay Baykal, Ceyhun Açarı, Pinar Özge Avar Aydın, Özge Baba, Esra Bağlan, Sevcan Bakkaloğlu, Sibel Bakırcı, Yelda Bilginer, Burcu Yücel Bozkaya, Şengül Çağlayan, Mustafa Çakan, Figen Çakmak, Taner Coşkuner, Ferhat Demir, Fatma Gül Demirkan, Şeyda Doğantan, Hatice Adıgüzel Dündar, Emine Duygu Ersözlü, Sercan Gücenmez, Oğuz Gürler, Rana İşgüder, Adem Küçük, Mukaddes Kalyoncu, Levent Kılıç, Sara Şebnem Kılıç, Hakan Kısaoğlu, Ayşenur Paç Kısaarslan, Zehra Kızıldağ, Duygu Kurtuluş, Semanur Özdel, Kübra Öztürk, Pelin Şenol, Ayşe Tanatar, Sema Nur Taşkın, Fatma Tuncer Kuru, Serkan Türkuçar, Kadir Ulu, Erbil Ünsal, Ayten Yazıcı, Ayşe Cefle, Deniz Gezgin Yıldırım, Selçuk Yüksel, Özgür Kasapçopur, Seza Özen, Nuray Aktay Ayaz, Hafize Emine Sönmez, Betül Sözeri
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Abstract

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.

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对青少年特发性关节炎过渡护理的共识:一项针对青少年、护理者和卫生专业人员的德尔菲研究。
背景:青少年慢性疾病的过渡护理领域,特别是青少年特发性关节炎(JIA),正在迅速发展。将这些患者转移到成人医疗保健系统在实际实施中提出了重大挑战。因此,每个国家都应制定适合其具体基础设施的过渡方案。为了实现这一目标,我们进行了一项德尔菲研究,以确定JIA过渡护理的关键组成部分。方法:三个小组和两轮由青少年和年轻人,父母和临床医生(儿科或成人风湿病学家)组成。结果,采用德尔菲法对过渡性护理关键陈述的接受程度进行反馈。结果:在102名接触者中,88名(86.3%)参与者回应了第一轮调查,其中包括48名临床医生,20名青少年和20名家长。在第二轮中,临床医生的数量下降到29人,而青少年和家长的数量保持不变。在专家意见的基础上,第一轮选出了29个陈述。在第一轮中获得≥70%批准的语句进入下一轮。16个陈述未达到≥70%的认可度。在剩下的12个国家中,有4个国家被排除在第二轮审查之外。结论:JIA患者过渡性护理基本问题虽已达成共识,但仍有若干问题有待达成共识。最终的20项清单在临床实践中的接受和适用性对于推进土耳其JIA过渡护理至关重要。
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来源期刊
Pediatric Rheumatology
Pediatric Rheumatology PEDIATRICS-RHEUMATOLOGY
CiteScore
4.10
自引率
8.00%
发文量
95
审稿时长
>12 weeks
期刊介绍: Pediatric Rheumatology is an open access, peer-reviewed, online journal encompassing all aspects of clinical and basic research related to pediatric rheumatology and allied subjects. The journal’s scope of diseases and syndromes include musculoskeletal pain syndromes, rheumatic fever and post-streptococcal syndromes, juvenile idiopathic arthritis, systemic lupus erythematosus, juvenile dermatomyositis, local and systemic scleroderma, Kawasaki disease, Henoch-Schonlein purpura and other vasculitides, sarcoidosis, inherited musculoskeletal syndromes, autoinflammatory syndromes, and others.
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