Survey on Management of Transition and Transfer From Pediatric- to Adult-based Care in Pediatric Kidney Transplant Recipients in Europe

Kreuzer, Martin; Prüfe, Jenny; Tönshoff, Burkhard; Pape, Lars

doi:10.1097/txd.0000000000000798

Cited by 18 publications

(18 citation statements)

References 29 publications

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“…1,39,40 However, a large multinational study in Europe found that these guidelines were not implemented sufficiently. 41 Our study found that the rate of loss to follow-up at all institutions during the transition period is alarmingly high. Our study highlights the importance of integrated care, which can include better integration of electronic medical systems, establishing inter-hospital care during the transition period and having a clear definition of patient ownership during the hands-offs.…”

Section: Discussionmentioning

confidence: 61%

Surgeon crossover between pediatric and adult centers is associated with decreased rate of loss to follow‐up among adolescent renal transplantation recipients

Hung

Williams

Bababekov

et al. 2019

Pediatric Transplantation

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The risk of adverse outcomes for pediatric renal transplant patients is highest during the transition from pediatric to adult care. While there have been many studies focus on graft failure and death, loss to follow‐up likely plays a large role in patient outcomes. We hypothesize patients are lost to follow‐up during this transition period and that patients transplanted at pediatric centers with a closely affiliated adult center (AFFs) are less likely to suffer from fragmentation of care and become lost to follow‐up. AFFs were defined as those pediatric centers whose transplant surgeons were also on staff at an adult center and were identified using center websites. We included patients undergoing renal transplantation at <=18 years of age and had data for the entire transition period on the Scientific Registry of Transplant Recipients (n = 6,762, 92.3% in 95 AFFs). 32% of patients were lost to follow‐up. On regression, patients transplanted at AFF were 33% less likely to be lost to follow‐up compared with those from non‐AFF (OR 0.67 CI 0.54‐0.82, P < 0.01). The proportion of patients lost to follow‐up during the transition period is remarkably high, but lower among recipients transplanted at AFFs. Poor follow‐up may be mitigated by improving integration of care.

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Section: Discussionmentioning

confidence: 61%

Surgeon crossover between pediatric and adult centers is associated with decreased rate of loss to follow‐up among adolescent renal transplantation recipients

Hung

Williams

Bababekov

et al. 2019

Pediatric Transplantation

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“…Los estudios a la fecha indican que, aunque hay avances, existen dificultades en el proceso y dadas las disparidades en las poblaciones no hay evidencia de que alguna intervención sea superior a la otra. Las guías coinciden en que debe ser un proceso ordenado enfocado en la educación gradual del paciente y actividades de autocuidado para garantizar el seguimiento en el tiempo y el mantenimiento de la salud (12,25,26,32,37,39,(46)(47)(48) . A continuación, se resumen las más importantes recomendaciones de estas guías.…”

Section: Proceso De Transiciónunclassified

“…Se debe incluir datos anteriores relevantes que hayan motivado cambios en los tratamientos y los resultados de estos, efectos adversos y secundarios, esquemas de vacunación cumplidos, estudios imagenológicos, etc. (12,26,29,32,39,46,48) . 5.…”

Section: Proceso De Transiciónunclassified

Transición del cuidado pediátrico al cuidado adulto ¿una realidad para la cual no estamos preparados?

Urrea-Sepulveda

Tovar

2020

Univ. Salud

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Introducción: La sobrevida de pacientes pediátricos con enfermedades crónicas cada vez es mayor a nivel mundial, tendencia que es similar en Colombia. La mayoría de estos pacientes realizaran la transición a la adultez y con ésta a los servicios médicos de adultos. Objetivo: Evidenciar la importancia de hacer una adecuada transición del paciente con enfermedades crónicas, del cuidado pediátrico a la atención del adulto, describir las características, barreras, riesgos y consecuencias de un proceso inadecuado. Materiales y métodos: Se realizó revisión de la literatura a partir de la búsqueda de información relacionada. Resultados: Se seleccionaron 50 artículos en diferentes revistas académicas. Con la información expuesta se describen las definiciones de enfermedad crónica, transición y transferencia al cuidado adulto, los riesgos de los adolescentes con enfermedades crónicas, la preparación y los diferentes pasos para hacer la transición y las consideraciones especiales. Conclusiones: La literatura a nivel mundial recalca la importancia de la realización de un proceso de transición esencial para garantizar el mantenimiento de la salud en los pacientes con enfermedades crónicas, sin embargo, no se encuentran guías o literatura al respecto realizadas en Colombia.

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“…Recommendations include structural changes in health care systems [9][10][11] as well as propositions on how to support patients while transferring [12][13][14][15][16][17]. Although various transition programs have been introduced [18][19][20][21], no gold standard in transitioning YSHCN from pediatric care to the adult centered care has been established so far [11,[22][23][24]. Nevertheless, an urgent need for enhanced success in transitioning is evident in the field of chronic and rare diseases [25,26].…”

Section: Introductionmentioning

confidence: 99%

Be on TRAQ – Cross-cultural adaptation of the Transition Readiness Assessment Questionnaire (TRAQ 5.0) and pilot testing of the German Version (TRAQ-GV-15)

Culen

Herle

König

et al. 2019

Journal of Transition Medicine

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ObjectiveTransfer from pediatric care into the adult health care system is known to be a vulnerable phase in the lives of youth with special health care needs (YSHCN). Recommendations from the literature favor assessment of transition readiness rather than simply pass over YSHCN from pediatric to adult-centered care by the age of 18. Nevertheless, no validated and disease neutral assessment instrument in German exists to date. Hence, our aim was to cross-culturally adapt and to pilot-test a German version of the Transition Readiness Assessment Questionnaire (TRAQ 5.0). We wanted to provide a tool that can be applied broadly during the health care transition (HCT) process of YSHCN.MethodsThe development included translating and adapting TRAQ 5.0 to German and conducting a pilot-study with 172 YSHCN between the ages of 14 and 23.ResultsCross-cultural adaptation resulted in the TRAQ-GV-15. Exploratory factor analysis led to a 3 factor-structure. Internal consistency for the overall score was good with a Cronbach’s alpha of 0.82. Age, in contrast to sex, had a significant effect on the TRAQ scoring. The administration of the TRAQ-GV-15 was well received and demonstrated good feasibility.ConclusionThe TRAQ-GV-15 is an easily applicable and clinically usable instrument for assessing transition readiness in German speaking YSHCN prior to HCT.

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Survey on Management of Transition and Transfer From Pediatric- to Adult-based Care in Pediatric Kidney Transplant Recipients in Europe

Abstract: Supplemental digital content is available in the text.

Cited by 18 publications

References 29 publications

Surgeon crossover between pediatric and adult centers is associated with decreased rate of loss to follow‐up among adolescent renal transplantation recipients

Surgeon crossover between pediatric and adult centers is associated with decreased rate of loss to follow‐up among adolescent renal transplantation recipients

Transición del cuidado pediátrico al cuidado adulto ¿una realidad para la cual no estamos preparados?

Be on TRAQ – Cross-cultural adaptation of the Transition Readiness Assessment Questionnaire (TRAQ 5.0) and pilot testing of the German Version (TRAQ-GV-15)

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