Towards a standardized program of transitional care for adolescents with juvenile idiopathic arthritis for Turkey: a national survey study

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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.

Supplementary Information

The online version contains supplementary material available at 10.1186/s12969-023-00943-3.

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Most cited references 29

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Juvenile idiopathic arthritis.

Angelo Ravelli, Alberto Martini (2007)

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 from child-centered to adult health-care systems for adolescents with chronic conditions. A position paper of the Society for Adolescent Medicine.

R W Blum, D Garell, C H Hodgman … (1993)

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Supporting the Health Care Transition From Adolescence to Adulthood in the Medical Home

Patience White, W Carl Cooley (2018)

Risk and vulnerability encompass many dimensions of the transition from adolescence to adulthood. Transition from pediatric, parent-supervised health care to more independent, patient-centered adult health care is no exception. The tenets and algorithm of the original 2011 clinical report, "Supporting the Health Care Transition from Adolescence to Adulthood in the Medical Home," are unchanged. This updated clinical report provides more practice-based quality improvement guidance on key elements of transition planning, transfer, and integration into adult care for all youth and young adults. It also includes new and updated sections on definition and guiding principles, the status of health care transition preparation among youth, barriers, outcome evidence, recommended health care transition processes and implementation strategies using quality improvement methods, special populations, education and training in pediatric onset conditions, and payment options. The clinical report also includes new recommendations pertaining to infrastructure, education and training, payment, and research.

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Author and article information

Contributors

Hafize Emine Sönmez:

ORCID: http://orcid.org/0000-0002-9186-3068

eminesonmez@gmail.com

Journal

Journal ID (nlm-ta): Pediatr Rheumatol Online J

Journal ID (iso-abbrev): Pediatr Rheumatol Online J

Title: Pediatric Rheumatology Online Journal

Publisher: BioMed Central (London )

ISSN (Electronic): 1546-0096

Publication date (Electronic): 2 January 2024

Publication date PMC-release: 2 January 2024

Publication date Collection: 2024

Volume: 22

Electronic Location Identifier: 7

Affiliations

[1 ]GRID grid.488643.5, ISNI 0000 0004 5894 3909, Department of Pediatric Rheumatology, , University of Health Sciences, Umraniye Research and Training Hospital, ; Istanbul, Turkey

[2 ]Department of Pediatric Rheumatology, Faculty of Medicine, Kocaeli University, ( https://ror.org/0411seq30) Kocaeli, Turkey

[3 ]Department of Pediatric Rheumatology, Faculty of Medicine, Inönü 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) Istanbul, 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 ]GRID grid.414874.a, ISNI 0000 0004 0642 7021, Department of Rheumatology, , Izmir Atatürk Research and Training Hospital, ; 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 ]GRID grid.417018.b, ISNI 0000 0004 0419 1887, Department of Physical Therapy and Rehabilitation, , Umraniye Training and Research Hospital, ; Istanbul, Turkey

[27 ]GRID grid.413298.5, ISNI 0000 0004 0642 5958, Department of Pediatric Rheumatology, , Göztepe Research and Training Hospital, ; 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 ]GRID grid.412364.6, ISNI 0000 0001 0680 7807, Department of Pediatric Rheumatology, Faculty of Medicine, , Onsekiz Mart University, ; Çanakkele, Turkey

[33 ]GRID grid.506076.2, ISNI 0000 0004 1797 5496, Department of Pediatric Rheumatology, , Istanbul University-Cerrahpaşa, Cerrahpaşa Medical School, ; Istanbul, Turkey

Author information

Hafize Emine Sönmez http://orcid.org/0000-0002-9186-3068

Article

Publisher ID: 943

DOI: 10.1186/s12969-023-00943-3

PMC ID: 10762787

PubMed ID: 38167070

SO-VID: dffb8b28-e25a-4755-9d28-c89e6db2d672

License:

Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, 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 changes were made. 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/4.0/. The Creative Commons Public Domain Dedication waiver ( http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated in a credit line to the data.

History

Date received : 24 September 2023

Date accepted : 9 December 2023

Custom metadata

ScienceOpen disciplines: Pediatrics

Keywords: adolescent,arthritis,juvenile,chronic disease,transition to adult care

Data availability:

ScienceOpen disciplines: Pediatrics

Keywords: adolescent, arthritis, juvenile, chronic disease, transition to adult care

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Towards a standardized program of transitional care for adolescents with juvenile idiopathic arthritis for Turkey: a national survey study

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Abstract

Background

Methods

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Conclusions

Supplementary Information

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Estudio del peso al nacer

Most cited references 29

Juvenile idiopathic arthritis.

Transition from child-centered to adult health-care systems for adolescents with chronic conditions. A position paper of the Society for Adolescent Medicine.

Supporting the Health Care Transition From Adolescence to Adulthood in the Medical Home

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Cited by 4

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