Dataset Information

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

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.

SUBMITTER: Sozeri B

PROVIDER: S-EPMC10762787 | biostudies-literature | 2024 Jan

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

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

Sözeri Betül B Şahin Nihal N Açarı Ceyhun C Avar Aydın Pinar Ozge PO Baba Ozge O Bağlan Esra E Bakkaloğlu Sevcan S Bakırcı Sibel S Bilginer Yelda Y Bozkaya Burcu Yücel BY Çağlayan Şengül Ş Çakan Mustafa M Çakmak Figen F Coşkuner Taner T Demir Ferhat F Demirkan Fatma Gül FG Doğantan Şeyda Ş Adıgüzel Dündar Hatice H Ersözlü Emine Duygu ED Gücenmez Sercan S Gürler Oğuz O İşgüder Rana R Küçük Adem A Kalyoncu Mukaddes M Kılıç Levent L Kılıç Sara Şebnem SŞ Kısaoğlu Hakan H Paç Kısaarslan Ayşenur A Kızıldağ Zehra Z Kurtuluş Duygu D Özdel Semanur S Öztürk Kübra K Şenol Pelin P Tanatar Ayşe A Taşkın Sema Nur SN Tuncer Kuru Fatma F Türkuçar Serkan S Ulu Kadir K Ünsal Erbil E Yazıcı Ayten A Gezgin Yıldırım Deniz D Yüksel Selçuk S Kasapçopur Özgür Ö Özen Seza S Aktay Ayaz Nuray N Sönmez Hafize Emine HE

Pediatric rheumatology online journal 20240102 1

<h4>Background</h4>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.<h4>Met ...[more]

PMID: 38167070

Similar Datasets

Project description:BackgroundAdolescents with Juvenile Idiopathic Arthritis (JIA) are at risk for physical, emotional, social and role challenges that negatively impact quality of life. Peer mentoring has been shown to improve positive health behaviours in adolescents with chronic disease while simultaneously providing social support. The objectives of this paper are to examine the feasibility and acceptability of an online peer mentoring program (iPeer2Peer Program) for adolescents with JIA.MethodsThe iPeer2Peer program was examined using a waitlist pilot randomized control trial (RCT). Participants were randomly allocated to the intervention or wait-list control group via a secure, web-based randomization service. Health care providers and investigators were blinded to participant group allocation. Trained peer mentors (16-25 years; successfully managing their JIA) were matched to participants (12-18 years; diagnosed with JIA) randomized to the intervention group to provide peer support and education for effective self-management of JIA. Participant-mentor pairings connected ten times over 8 weeks using Skype video calls. Primary outcomes focused on implementation (i.e. measures of feasibility and acceptability). Secondary outcomes focused on effectiveness (i.e. measures of self-management, self-efficacy, pain, social support and quality of life).ResultsThirty adolescents (mean age 14.3 ± 1.7 years, 97 % female) completed the RCT (intervention n = 16, control n = 14).Primary outcomesOne third (32 %) of adolescents approached agreed to participate, completed baseline measures and were randomized. Half of pairings completed ten calls within 8 weeks. Average call length was twice the required amount with call lengths of 44.72 ± 15.76 min. Participants reported satisfaction with the program and all reported that they would recommend it to their peers. Participants' mean engagement level with the program was 8.53/10 (range = 7-10).Secondary outcomesParticipants who completed the iPeer2Peer Program demonstrated improvements in their perceived ability to manage JIA (p < 0.04), compared to controls. No adverse events were reported.ConclusionThe iPeer2Peer Program is a promising intervention that improves acceptability of self-management and peer support treatments for adolescents with JIA. By using the Internet to connect mentors to adolescents with JIA it may also improve accessibility to these resources. Findings will be used to adapt the program and refine the methodology for a full-scale RCT.Trial registrationClinicalTrials.gov Identifier: NCT01986400 . Registered November 11, 2013.

Project description:BackgroundMedical treatment for children with Juvenile Idiopathic Arthritis (JIA) has improved radically since the development of biological disease-modifying antirheumatic drugs. However, children suffer from pain and anxiety, and parents often experience loneliness and lack of support. Some parents reported that information provided at the time their child was diagnosed could be difficult to assimilate. Therefore, the aim of this study was to develop a Juvenile Arthritis Support Program (JASP-1) for children recently diagnosed with JIA and their parents. Moreover, the aim was to explore patients´ and parents´ experiences with JASP-1 and its potential impact on patients´ physical health.MethodsJASP-1 included seven patient- and family-centered clinical visit from time of diagnose and one year ahead. Data were collected from a study-specific questionnaire answered by children and their parents after participation in JASP-1 and from the pediatric rheumatology register. The study-specific questionnaire explored participants´ experience with the care they received during their first year with JIA. Registry and questionnaire data from the intervention (JASP-1) group was compared to a control group.ResultsThe analysis revealed that children and parents who completed JASP-1 were more satisfied with the care they had received during their first year with JIA than the control group. The results also showed that children who completed JASP-1 were assessed as having better overall health after 12 months, than children in the control group (JASP-1 = mean 4.33, 95% Confidence Interval (CI) 4.17 - 4.46), (Control = mean 3.68, 95% CI 3.29 - 4.06), (p = 0.002). Moreover, children in the JASP-1 group had less disease impact on daily life (JASP-1 = mean 0.15, 95% CI 0.07 - 0.24) (Control = mean 0.40, 95% CI 0.13 - 0.67), (p = 0.017) and less active joints than the control group (JASP-1 = mean 0.62, 95% CI 0.35 - 1.58), (Control = mean 0.87, 95% CI 0.18 - 1.56), (p = 0.054).ConclusionA support program like JASP-1 could be an effective way of not only supporting children newly diagnosed with JIA and their parents psychologically but may also increase children's overall physical health and improve quality of care within pediatric rheumatology.Trial registrationRetrospectively registered in ClinicalTrials.gov, the 13th of February with ID NCT06284616.

Dataset Information

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

Background

Methods

Results

Conclusions

Publications

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

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets