Transition from child to adult care in an outpatient clinic for adolescents with juvenile idiopathic arthritis: An inductive qualitative study

Knudsen, Line Raunsbæk; Thurah, Annette de; Bjerrum, Merete

doi:10.1002/nop2.164

Cited by 14 publications

(3 citation statements)

References 34 publications

(109 reference statements)

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“…The patient experiences shared in this study offer a unique glimpse into the lives of young adults as they navigate two vastly different healthcare systems. This research supports past qualitative findings of significant differences in the model and scope of care between pediatric and adult medical systems that have been identified in other countries [ 17 , 33 , 37 ]. Our findings indicate that this remains an issue in the Canadian context.…”

Section: Discussionsupporting

confidence: 89%

“…Themes and sub-themes identified had support as well in previous qualitative studies as synthesized in a 2020 systematic review which included 16 studies. Preparedness for transition [ 17 , 33 ], readiness for transfer of care [ 17 ], developing self-advocacy skills [ 17 ], continuity and breadth of care [ 17 , 33 ], changing relationships [ 17 ], culture shock [ 17 ], new responsibilities [ 17 ], need for support [ 17 ], social support [ 17 , 34 ], while additional emphases were identified by this study on mental health support and ongoing support needs – beyond the transfer of care. The Kelly et al systematic review [ 17 ] identified support for the whole person (theme of deprived of human focus) which encompasses psychological support, but did not explicitly identify mental health support [ 17 ].…”

Section: Discussionmentioning

confidence: 99%

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Transitions from pediatric to adult rheumatology care for juvenile idiopathic arthritis: a patient led qualitative study

et al. 2022

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Background Juvenile idiopathic arthritis (JIA) is a childhood autoimmune disease that causes swelling and pain in at least one joint. Young people with JIA experience symptoms that persist into adulthood, and thus will undergo a transition including the o transfer of care from a pediatric rheumatologist an adult rheumatologist. Missing from the literature is research that centres the transition experience of young people with JIA in Canada. This goal of this patient-led research was to explore the experience young people with JIA through the process of transition. Methods Qualitative study using the Patient and Community Engaged Research (PaCER) approach. Trained patient-researchers conducted three focus groups using the Set, Collect and Reflect PaCER process. Participants, recruited via purposive and snowball sampling using research/personal networks and social media, were young people with JIA in Canada between 18 and 28 years who had experienced with the process of transition to adult care. Recordings were transcribed verbatim. Patient researchers individually coded overlapping sections of the data, and thematic analysis was conducted. Results In total, nine individuals participated in one or more focus groups. Three themes were identified, with sub-themes: preparedness for transition (readiness for the transfer of care, developing self-advocacy skills), continuity and breadth of care (changing relationships, culture shock, new responsibilities), need for support (social support, mental health support, and ongoing support needs – beyond the transfer of care. Peer support was a connecting concept in the support sub-themes. Transition was more than a change in primary physician but also a change in the care model and breadth of care provided, which was challenging for young people especially if they had insufficient information. Conclusions Transition from pediatric to adult care in rheumatology is a significant period for young people living with JIA, and this patient-led study provided insight into the experience from the perspective of young people with JIA which is critical to informing the development of supports for patients through the process. Patients, caregivers, pediatric and adult rheumatologists and members of the multi-disciplinary care team need to collaborate in terms of resources preparing for transfer, and support throughout the transition process to ensure a successful transition process.

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Section: Discussionsupporting

confidence: 89%

Section: Discussionmentioning

confidence: 99%

Transitions from pediatric to adult rheumatology care for juvenile idiopathic arthritis: a patient led qualitative study

et al. 2022

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“…We know that there are many challenges inherent in the transition process—feeling unprepared, finding new providers, establishing health insurance independently from parents, and becoming more self-reliant in care. 19–21 Our post-transfer cohort did report increased difficulties with obtaining insurance, were less likely to have seen a rheumatologist in the past year, and took significantly fewer medications than our pre-transfer group. Difficulties with transfer were reported in nine (23%) post-transfer participants; four of these participants felt these difficulties directly contributed to SLE flare.…”

Section: Discussionmentioning

confidence: 72%

Disease activity and health-care utilization among young adults with childhood-onset lupus transitioning to adult care: data from the Pediatric Lupus Outcomes Study

Haro

Lawson

Hersh

2020

Lupus

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Background Individuals with childhood-onset systemic lupus erythematosus (cSLE) must transfer from pediatric to adult care. The goal of this study was to examine disease activity and health-care utilization among young adults with cSLE who are undergoing or have recently completed the transfer to adult care. Methods The Pediatric Lupus Outcomes Study (PLOS) is a prospective longitudinal cohort study of young adults aged 18–30 diagnosed with cSLE. We conducted a cross-sectional analysis comparing 47 participants under the care of pediatric rheumatologists to 38 who had completed transfer to adult care. Demographics, disease manifestations, health- care utilization and transition readiness were compared between groups. Results Those in the post-transfer group had significantly lower medication usage and were less likely to have seen a rheumatologist in the past year. Disease manifestations, flare rates, and hospitalizations were similar between groups. Nearly a quarter of patients who had transferred to adult care reported difficulties with the process. Conclusion Post-transfer patients had lower health-care utilization as evidenced by less medication usage and lack of rheumatology follow-up, in spite of the fact that disease activity was similar in both groups. Future studies will assess longitudinal changes in disease activity and damage in this population.

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Design of a Rheumatology Transition Clinic for a Resource-Constrained Setting

García-Rodríguez

Arana-Guajardo²,

Villarreal-Treviño

et al. 2022

Indian J Pediatr

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Transition from child to adult care in an outpatient clinic for adolescents with juvenile idiopathic arthritis: An inductive qualitative study

Cited by 14 publications

References 34 publications

Transitions from pediatric to adult rheumatology care for juvenile idiopathic arthritis: a patient led qualitative study

Transitions from pediatric to adult rheumatology care for juvenile idiopathic arthritis: a patient led qualitative study

Disease activity and health-care utilization among young adults with childhood-onset lupus transitioning to adult care: data from the Pediatric Lupus Outcomes Study

Design of a Rheumatology Transition Clinic for a Resource-Constrained Setting

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