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    Consensus on transition care for juvenile idiopathic arthritis: a Delphi study with youth, caregivers, and health professionals
    (Bmc, 2024) Sahin, Nihal; Baykal, Gulcan Ozomay; Acari, Ceyhun; Aydin, Pinar Ozge Avar; Baba, Ozge; Baglan, Esra; Bakkaloglu, Sevcan
    BackgroundThe 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.MethodsThree 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.ResultsOut 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.ConclusionAlthough 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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    Defining Inactivity of Juvenile Spondyloarthropathies: Delphi Study Among Pediatric Rheumatology Academy (PeRA) From Türkiye
    (Wiley, 2026) Turkucar, Serkan; Sozeri, Betul; Sonmez, Hafize Emine; Sahin, Nihal; Acari, Ceyhun; Dundar, Hatice Adiguzel; Isguder, Rana
    Introduction Juvenile spondyloarthropathies (JSpA) are a group of chronic inflammatory diseases that differ in their clinical features and course from adult spondyloarthropathies and other subtypes of juvenile idiopathic arthritis (JIA). Therefore, defining disease inactivity in JSpA requires specific criteria. This Delphi study aimed to establish a national consensus on its core clinical, laboratory, and radiological domains.Methods A total of 27 pediatric rheumatologists participated in the Delphi survey, conducted in two rounds. Participants were asked multiple-choice and Likert-type questions regarding their preferences for using domains including anamnesis, laboratory findings, imaging methods, and predefined disease activity scores for assessing inactivity. At the end of each round, the study coordinators determined the strong consensus items based on a power analysis of these parameters.Results The absence of pain or tenderness in the peripheral joints, lower back and entheseal regions in anamnesis domain and tenderness in the peripheral joints, entheseal areas, and hip examination; swelling in the peripheral joints; tenderness on sacroiliac compression testing; and no reduction in hip RoM examination in physical examination domain received the highest scores and were accepted as strong consensus. Furthermore, normalization of MRI findings of SIJ and hip/peripheral joint and physician global score = 0 reached the specified thresholds, resulting in strong consensus following the second round.Conclusions This Delphi study highlights the need for a multidimensional approach that integrates clinical, radiological, and physician assessments to define disease inactivity in patients with JSpA. The resulting consensus provides a more specific assessment on inactivity defining JSpA patients and reflects a national consensus.
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    Towards a standardized program of transitional care for adolescents with juvenile idiopathic arthritis for Turkey: a national survey study
    (Bmc, 2024) Sozeri, Betul; Sahin, Nihal; Acari, Ceyhun; Avar Aydin, Pinar Ozge; Baba, Ozge; Baglan, Esra; Bakkaloglu, Sevcan
    BackgroundJuvenile 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.MethodsA 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.ResultsThe 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.ConclusionsThe 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.