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      Is Open Access

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

      research-article
      1 , , 2 , 3 , 4 , 5 , 6 , 7 , 8 , 9 , 10 , 2 , 11 , 12 , 2 , 13 , 14 , 15 , 16 , 17 , 18 , 19 , 20 , 21 , 5 , 22 , 23 , 24 , 25 , 20 , 26 , 6 , 27 , 7 , 14 , 28 , 29 , 30 , 2 , 20 , 31 , 31 , 7 , 32 , 33 , 9 , 14 , 1 , 2
      Pediatric Rheumatology
      BioMed Central
      Adolescent, Arthritis, Chronic disease, Delphi-study, Juvenile, Transition to adult care

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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.

          Supplementary Information

          The online version contains supplementary material available at 10.1186/s12969-024-01047-2.

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          Most cited references27

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          Defining consensus: a systematic review recommends methodologic criteria for reporting of Delphi studies.

          To investigate how consensus is operationalized in Delphi studies and to explore the role of consensus in determining the results of these studies. Systematic review of a random sample of 100 English language Delphi studies, from two large multidisciplinary databases [ISI Web of Science (Thompson Reuters, New York, NY) and Scopus (Elsevier, Amsterdam, NL)], published between 2000 and 2009. About 98 of the Delphi studies purported to assess consensus, although a definition for consensus was only provided in 72 of the studies (64 a priori). The most common definition for consensus was percent agreement (25 studies), with 75% being the median threshold to define consensus. Although the authors concluded in 86 of the studies that consensus was achieved, consensus was only specified a priori (with a threshold value) in 42 of these studies. Achievement of consensus was related to the decision to stop the Delphi study in only 23 studies, with 70 studies terminating after a specified number of rounds. Although consensus generally is felt to be of primary importance to the Delphi process, definitions of consensus vary widely and are poorly reported. Improved criteria for reporting of methods of Delphi studies are required. Copyright © 2014 Elsevier Inc. All rights reserved.
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            Juvenile idiopathic arthritis.

            Juvenile idiopathic arthritis is a broad term that describes a clinically heterogeneous group of arthritides of unknown cause, which begin before 16 years of age. This term encompasses several disease categories, each of which has distinct methods of presentation, clinical signs, and symptoms, and, in some cases, genetic background. The cause of disease is still poorly understood but seems to be related to both genetic and environmental factors, which result in the heterogeneity of the illness. Although none of the available drugs has a curative potential, prognosis has greatly improved as a result of substantial progresses in disease management. The most important new development has been the introduction of drugs such as anticytokine agents, which constitute a valuable treatment option for patients who are resistant to conventional antirheumatic agents. Further insights into the disease pathogenesis and treatment will be provided by the continuous advances in understanding of the mechanisms connected to the immune response and inflammatory process, and by the development of new drugs that are able to inhibit selectively single molecules or pathways.
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              Transition of care for adolescents from paediatric services to adult health services.

              There is evidence that the process of transition from paediatric (child) to adult health services is often associated with deterioration in the health of adolescents with chronic conditions.Transitional care is the term used to describe services that seek to bridge this care gap. It has been defined as 'the purposeful, planned movement of adolescents and young adults with chronic physical and medical conditions from child-centred to adult-oriented health care systems'. In order to develop appropriate services for adolescents, evidence of what works and what factors act as barriers and facilitators of effective interventions is needed.
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                Author and article information

                Contributors
                nihal_sahin41@hotmail.com , nihal.sahin@kocaeli.edu.tr
                Journal
                Pediatr Rheumatol Online J
                Pediatr Rheumatol Online J
                Pediatric Rheumatology
                BioMed Central (London )
                1546-0096
                18 December 2024
                18 December 2024
                2024
                : 22
                : 105
                Affiliations
                [1 ]Department of Pediatric Rheumatology, Faculty of Medicine, Kocaeli University, ( https://ror.org/0411seq30) Kocaeli, Turkey
                [2 ]Department of Pediatric Rheumatology, University of Health Sciences, Ümraniye Research and Training Hospital, ( https://ror.org/03k7bde87) Istanbul, Turkey
                [3 ]Department of Pediatric Rheumatology, Faculty of Medicine, İnönü University, ( https://ror.org/04asck240) Malatya, Turkey
                [4 ]Department of Pediatric Rheumatology, Tekirdağ State Hospital, Tekirdağ, Turkey
                [5 ]Department of Pediatric Rheumatology, Karadeniz Technical University Faculty of Medicine, ( https://ror.org/03z8fyr40) Trabzon, Turkey
                [6 ]Department of Pediatric Rheumatology, Etlik State Hospital, Ankara, Turkey
                [7 ]Department of Pediatric Rheumatology, Faculty of Medicine, Gazi University, ( https://ror.org/054xkpr46) Ankara, Turkey
                [8 ]Department of Rheumatology, Antalya State Hospital, Antalya, Turkey
                [9 ]Department of Pediatric Rheumatology, Faculty of Medicine, Hacettepe University, ( https://ror.org/04kwvgz42) Ankara, Turkey
                [10 ]Department of Pediatric Rheumatology, Samsun Research and Training Hospital, Samsun, Turkey
                [11 ]Department of Pediatric Rheumatology, Zeynep Kamil Research and Training Hospital, Istanbul, Turkey
                [12 ]Department of Pediatric Rheumatology, Başakşehir Çam and Sakura State Hospital, ( https://ror.org/05grcz969) Istanbul, Turkey
                [13 ]Department of Pediatric Rheumatology, Acıbadem Hospital, ( https://ror.org/05g2amy04) İstanbul, Turkey
                [14 ]Department of Pediatric Rheumatology, Istanbul Faculty of Medicine, Istanbul University, ( https://ror.org/03a5qrr21) Istanbul, Turkey
                [15 ]Department of Pediatric Rheumatology, Mersin City Hospital, Mersin, Turkey
                [16 ]Department of Pediatric Rheumatology, Behçet Uz Research and Training Hospital, Izmir, Turkey
                [17 ]Department of Rheumatology, Adana City Research and Training Hospital, Adana, Turkey
                [18 ]Department of Rheumatology, Izmir Atatürk Research and Training Hospital, ( https://ror.org/03max4q92) Izmir, Turkey
                [19 ]Department of Rheumatology, Medikal Park Hospital, Samsun, Turkey
                [20 ]Department of Pediatric Rheumatology, Faculty of Medicine, Dokuz Eylül University, ( https://ror.org/00dbd8b73) Izmir, Turkey
                [21 ]Department of Rheumatology, Faculty of Medicine, Konya Selçuk University, ( https://ror.org/045hgzm75) Konya, Turkey
                [22 ]Department of Rheumatology, Faculty of Medicine, Hacettepe University, ( https://ror.org/04kwvgz42) Ankara, Turkey
                [23 ]Department of Pediatric Rheumatology, Faculty of Medicine, Uludağ University, ( https://ror.org/03tg3eb07) Bursa, Turkey
                [24 ]GRID grid.513116.1, Department of Pediatric Rheumatology, , Kayseri City Hospital, ; Kayseri, Turkey
                [25 ]Department of Pediatric Rheumatology, Faculty of Medicine, Erciyes University, ( https://ror.org/047g8vk19) Kayseri, Turkey
                [26 ]Department of Physical Therapy and Rehabilitation, Umraniye Training and Research Hospital, ( https://ror.org/023wdy559) Istanbul, Turkey
                [27 ]Department of Pediatric Rheumatology, Göztepe Research and Training Hospital, ( https://ror.org/04f3vmh71) Istanbul, Turkey
                [28 ]Department of Pediatric Rheumatology, Eskişehir City Hospital, ( https://ror.org/00czdkn85) Eskişehir, Turkey
                [29 ]Department of Rheumatology, Osmaniye State Hospital, Osmaniye, Turkey
                [30 ]Department of Pediatric Rheumatology, Faculty of Medicine, Pamukkale University, ( https://ror.org/01etz1309) Denizli, Turkey
                [31 ]Department of Rheumatology, Faculty of Medicine, Kocaeli University, ( https://ror.org/0411seq30) Kocaeli, Turkey
                [32 ]Department of Pediatric Rheumatology, Faculty of Medicine, Onsekiz Mart University, ( https://ror.org/05rsv8p09) Çanakkele, Turkey
                [33 ]Department of Pediatric Rheumatology, Istanbul University-Cerrahpaşa, Cerrahpaşa Medical School, ( https://ror.org/01dzn5f42) Istanbul, Turkey
                Author information
                http://orcid.org/0000-0002-2122-6952
                Article
                1047
                10.1186/s12969-024-01047-2
                11654283
                39695685
                71282d50-05de-4172-b4f1-382cd3a5f41c
                © The Author(s) 2024

                Open Access This article is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License, which permits any non-commercial use, sharing, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if you modified the licensed material. You do not have permission under this licence to share adapted material derived from this article or parts of it. The images or other third party material in this article are included in the article’s Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article’s Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by-nc-nd/4.0/.

                History
                : 3 September 2024
                : 4 December 2024
                Categories
                Research Article
                Custom metadata
                © BioMed Central Ltd., part of Springer Nature 2024

                Pediatrics
                adolescent,arthritis,chronic disease,delphi-study,juvenile,transition to adult care
                Pediatrics
                adolescent, arthritis, chronic disease, delphi-study, juvenile, transition to adult care

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