Health-related quality of life, continuity of care and patient satisfaction: long-term outcomes of former patients of the Tuebingen Transition Program (TTP) – a retrospective cohort study

Boeker, Luca Samuel; Kuemmerle‐Deschner, Jasmin; Saur, Sebastian; Erbis, Gabriele; Hansmann, Sandra

doi:10.1186/s12969-022-00776-6

Cited by 3 publications

(1 citation statement)

References 36 publications

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“…The process followed the six core elements [ 15 ]. Another transition program, called the Tuebingen Transition Program, was announced by Boeker and colleagues [ 44 ]. This program usually started at age 13 years, depending on the maturity and disease activity of the patient.…”

Section: Introductionmentioning

confidence: 99%

Addressing the unmet needs of transitional care in juvenile idiopathic arthritis

Şahin,

Sönmez,

Aktay Ayaz

et al. 2023

Rheumatology

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Objectives We aimed to comprehensively analyze the available literature to identify the unmet requirements in transitional programs tailored specifically for patients diagnosed with juvenile idiopathic arthritis (JIA). Methods According to published guidance on narrative reviews, a systematic review of the literature on transitional care in rheumatology was conducted. Pertinent documents were collected from reputable databases such as Web of Science, Scopus, and MEDLINE/PubMed. The search encompassed literature published from the databases' inception until January 2023. Results In this study, a comprehensive analysis was conducted on a total of 34 studies. Among these, 12 studies focused on assessing the readiness of adolescents and young adults diagnosed with juvenile idiopathic JIA. Additionally, 18 studies examined the effectiveness of structured transition programs in terms of adherence and satisfaction. Finally, 4 studies investigated disease-related outcomes in this population. Conclusion The need for transitioning children with rheumatic diseases to adult rheumatology care for continued care is clearly evident. However, the absence of established best practice guidelines presents a challenge in facilitating this transition effectively. Although several scoring systems have been proposed to ensure organized and seamless transfers, a consensus has not yet been reached. Furthermore, the socioeconomic and cultural variations across countries further complicate the development of universal guidelines for transitioning children with rheumatic diseases. To address these concerns, our objective in conducting this literature review was to emphasize the significance of this issue and identify the specific requirements based on the unmet needs of the transition process.

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Section: Introductionmentioning

confidence: 99%

Addressing the unmet needs of transitional care in juvenile idiopathic arthritis

Şahin,

Sönmez,

Aktay Ayaz

et al. 2023

Rheumatology

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Resource utilization and costs of transitioning from pediatric to adult care for patients with chronic autoinflammatory and autoimmune disorders

Choukair,

Patry,

Lehmann

et al. 2024

Pediatr Rheumatol

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Background A structured transition of adolescents and young adults with chronic autoinflammatory and autoimmune disorders from the pediatric to the adult health care system is important. To date, data on the time, processes, outcome, resources required for the necessary components of the transition process and the associated costs are lacking. Methods Evaluation of resource use and costs in a prospective cohort study of 58 adolescents with chronic autoinflammatory and autoimmune disorders, for the key elements of a structured transition pathway including (i) compilation of a summary of patient history, (ii) assessment of patients’ disease-related knowledge and needs, (iii) required education and counseling sessions, (iv) and a transfer appointment of the patient with the current pediatric and the future adult rheumatologist. Results Forty-nine of 58 enrolled patients (84.5%) completed the transition pathway and were transferred to adult care. The mean time from the decision to start the transition process to the final transfer consultation was 315 ± 147 days. Transfer consultations were performed in 49 patients, including 10 patients jointly with the future adult rheumatologist. Most consultations were performed by the multidisciplinary team with a median of three team members and lasted 65.5 ± 21.3 min. The cumulative cost of all consultation and education sessions performed including the transfer appointment was 283 ± 164 Euro per patient. In addition, the cost of coordinating the transition process was 57.3 ± 15.4 Euro. Conclusions A structured transition pathway for patients with chronic autoinflammatory and autoimmune disorders is resource and time consuming and should be adequately funded.

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

Şahin,

Baykal,

Açarı

et al. 2024

Pediatr Rheumatol

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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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Health-related quality of life, continuity of care and patient satisfaction: long-term outcomes of former patients of the Tuebingen Transition Program (TTP) – a retrospective cohort study

Cited by 3 publications

References 36 publications

Addressing the unmet needs of transitional care in juvenile idiopathic arthritis

Addressing the unmet needs of transitional care in juvenile idiopathic arthritis

Resource utilization and costs of transitioning from pediatric to adult care for patients with chronic autoinflammatory and autoimmune disorders

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

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