Dataset Information

Transition structures and timing of transfer from paediatric to adult-based care after kidney transplantation in Germany: a qualitative study.

ABSTRACT:

Objectives

It is known that transition, as a shift of care, marks a vulnerable phase in the adolescents' lives with an increased risk for non-adherence and allograft failure. Still, the transition process of adolescents and young adults living with a kidney transplant in Germany is not well defined. The present research aims to assess transition-relevant structures for this group of young people. Special attention is paid to the timing of the process.

Setting

In an observational study, we visited 21 departments of paediatric nephrology in Germany. Participants were doctors (n=19), nurses (n=14) and psychosocial staff (n=16) who were responsible for transition in the relevant centres. Structural elements were surveyed using a short questionnaire. The experiential viewpoint was collected by interviews which were transcribedverbatim before thematic analysis was performed.

Results

This study highlights that professionals working within paediatric nephrology in Germany are well aware of the importance of successful transition. Key elements of transitional care are well understood and mutually agreed on. Nonetheless, implementation within daily routine seems challenging, and the absence of written, structured procedures may hamper successful transition.

Conclusions

While professionals aim for an individual timing of transfer based on medical, social, emotional and structural aspects, rigid regulations on transfer age as given by the relevant health authorities add on to the challenge.

Trial registration number

ISRCTN Registry no 22988897; results (phase I) and pre-results (phase II).

SUBMITTER: Prufe J

PROVIDER: S-EPMC5734418 | biostudies-literature | 2017 Jun

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Transition structures and timing of transfer from paediatric to adult-based care after kidney transplantation in Germany: a qualitative study.

Prüfe Jenny J Dierks Marie-Luise ML Bethe Dirk D Oldhafer Martina M Müther Silvia S Thumfart Julia J Feldkötter Markus M Büscher Anja A Sauerstein Katja K Hansen Matthias M Pohl Martin M Drube Jens J Thiel Florian F Rieger Susanne S John Ulrike U Taylan Christina C Dittrich Katalin K Hollenbach Sabine S Klaus Günter G Fehrenbach Henry H Kranz Birgitta B Montoya Carmen C Lange-Sperandio Bärbel B Ruckenbrod Bettina B Billing Heiko H Staude Hagen H Brunkhorst Reinhard R Rusai Krisztina K Pape Lars L Kreuzer Martin M

BMJ open 20170612 6

<h4>Objectives</h4>It is known that transition, as a shift of care, marks a vulnerable phase in the adolescents' lives with an increased risk for non-adherence and allograft failure. Still, the transition process of adolescents and young adults living with a kidney transplant in Germany is not well defined. The present research aims to assess transition-relevant structures for this group of young people. Special attention is paid to the timing of the process.<h4>Setting</h4>In an observational s ...[more]

PMID: 28606904

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Project description:BackgroundAgeing into adulthood is challenging at baseline, and doing so with a chronic disease can add increased stress and vulnerability. Worldwide, a substantial care gap exists as children transition from care in a paediatric to adult setting. There is no current consensus on safe and equitable healthcare transition (HCT) for patients with chronic disease in resource-denied settings. Much of the existing literature is specific to HIV care. The objective of this narrative review was to summarise current literature related to adolescent HCT not associated with HIV, in low-income and middle-income countries (LMICs) and other resource-denied settings, in order to inform equitable health policy strategies.MethodsA literature search was performed using defined search terms in PubMed and Cumulative Index to Nursing and Allied Health Literature databases to identify all peer-reviewed studies published until January 2020, pertaining to paediatric to adult HCT for adolescents and young adults with chronic disease in resource-denied settings. Following deduplication, 1111 studies were screened and reviewed by two independent reviewers, of which 10 studies met the inclusion criteria. Resulting studies were included in thematic analysis and narrative synthesis.ResultsTwelve subthemes emerged, leading to recommendations which support equitable and age-appropriate adolescent care. Recommendations include (1) improvement of community health education and resilience tools for puberty, reproductive health and mental health comorbidities; (2) strengthening of health systems to create individualised adolescent-responsive policy; (3) incorporation of social and financial resources in the healthcare setting; and (4) formalisation of institution-wide procedures to address community-identified barriers to successful transition.ConclusionLimitations of existing evidence relate to the paucity of formal policy for paediatric to adult transition in LMICs for patients with childhood-onset conditions, in the absence of a diagnosis of HIV. With a rise in successful treatments for paediatric-onset chronic disease, adolescent health and transition programmes are needed to guide effective health policy and risk reduction for adolescents in resource-denied settings.

Project description:IntroductionPatient data are increasingly available in (multi)national registries, especially for rare diseases. This study aims to provide an overview of current European registries of paediatric kidney transplantation (PKT) care, their coverage, and their focus. Based on these data, we assess whether the current status is optimal for achieving our common goal: the optimalisation of health care.MethodsA list of all PKT centres within the European Union (EU) as well as active PKT registries was compiled using existing literature and the European Platform on Rare Disease Registration. Registry staff members were contacted to obtain information about the parameters collected and the registry design. These data were compared between registries.ResultsIn total, 109 PKT centres performing PKT surgery were identified in the 27 EU Member States. Currently, five European PKT registries are actively collecting data. In 39% of these centres, no data were registered within any of these five existing international registries. A large variety was observed in the number of patients, centres, and countries involved in the registries. Furthermore, variability existed regarding the inclusion criteria, definitions used, and parameters collected. Collection of perioperative urologic data are currently underrepresented in the registries.DiscussionCurrently, multiple registries are collecting valuable information in the field of PKT, covering the majority of PKT centres in Europe. Due to a large variety in the parameters collected as well as different focuses, data collection is currently fragmented and suboptimal; therefore, the current existing data are incomplete. In addition, a considerable proportion of the transplantation centres do not enter data in any international registry. Combining available information and harmonising future data collection could empower the aim of these registries-namely increasing insights into the strengths and potential of current care and therefore improve healthcare.

Project description:ImportanceA timely, well-coordinated transfer from pediatric- to adult-focused primary care is an important component of high-quality health care, especially for youths with chronic health conditions. Current recommendations suggest that primary-care transfers for youths occur between 18 and 21 years of age. However, the current epidemiology of transfer timing is unknown.ObjectiveTo examine the timing of transfer to adult-focused primary care providers (PCPs), the time between last pediatric-focused and first adult-focused PCP visits, and the predictors of transfer timing.Design, setting, and participantsRetrospective cohort study of patients insured by Harvard Pilgrim Health Care (HPHC), a large not-for-profit health plan. Our sample included 60 233 adolescents who were continuously enrolled in HPHC from 16 to at least 18 years of age between January 2000 and December 2012. Pediatric-focused PCPs were identified by the following provider specialty types, but no others: pediatrics, adolescent medicine, or pediatric nurse practitioner. Adult-focused PCPs were identified by having any provider type that sees adult patients. Providers with any specialty provider designation (eg, gastroenterology or gynecology) were not considered PCPs.Main outcomes and measuresWe used multivariable Cox proportional hazards regression to model age at first adult-focused PCP visit and time from the last pediatric-focused to the first adult-focused PCP visit (gap) for any type of office visit and for those that were preventive visits.ResultsYounger age at transfer was observed for female youths (hazard ratio [HR], 1.32 [95% CI, 1.29-1.36]) who had complex (HR, 1.06 [95% CI, 1.01-1.11]) or noncomplex (HR, 1.08 [95% CI, 1.05-1.12]) chronic conditions compared with those who had no chronic conditions. Transfer occurred at older ages for youths who lived in lower-income neighborhoods compared with those who lived in higher-income neighborhoods (HR, 0.89 [95% CI, 0.83-0.95]). The gap between last pediatric-focused to first adult-focused PCP visit was shorter for female youths than male youths (HR, 1.57 [95% CI, 1.53-1.61]) and youths with complex (HR, 1.35 [95% CI, 1.28-1.41]) or noncomplex (HR, 1.24 [95% CI, 1.20-1.28]) chronic conditions. The gap was longer for youths living in lower-income neighborhoods than for those living in higher-income neighborhoods (HR, 0.80 [95% CI, 0.75-0.85]). Multivariable models showed an adjusted median age at transfer of 21.8 years for office visits and 23.1 years for preventive visits and an adjusted median gap length of 20.5 months for office visits and 41.6 months for preventive visits.Conclusions and relevanceMost youths are transferring care later than recommended and with gaps of more than a year. While youths with chronic conditions have shorter gaps, they may need even shorter transfer intervals to ensure continuous access to care. More work is needed to determine whether youths are experiencing clinically important lapses in care or other negative health effects due to the delayed timing of transfer.

Project description:IntroductionAmong youth living with type 1 diabetes (T1D), the increasing demands to diabetes self-care and medical follow-up during the transition from paediatric to adult care has been associated with greater morbidity and mortality. Inadequate healthcare support for youth during the transition care period could exacerbate psychosocial risks and difficulties that are common during emerging adulthood. The current investigation sought to explore the post-transfer perceptions of emerging adults living with T1D relating to their transition to adult care.Research design and methodsThirty-three emerging adults living with T1D were recruited during paediatric care and contacted for a semistructured interview post-transfer to adult care (16.2±4.2 months post-transfer) in Montreal, Canada. We analysed data using thematic analysis.ResultsWe identified four key themes: (1) varied perceptions of the transition process from being quick and abrupt with minimal advice or information from paediatric healthcare providers (HCP) to more positive including a greater motivation for self-management and the transition being concurrent with the developmental period; (2) facilitators to the transition process included informational and tangible social support from HCPs and family or friends, a positive relationship with adult HCP and a greater ease in communicating with the adult care clinic or adult HCP; (3) barriers to adequate transition included lack of advice or information from paediatric HCPs, loss of support from HCPs and friends or family, the separation of healthcare services and greater difficulty in making appointments with adult clinic or HCP and (4) participants recommendations for improving the transition included increasing the length and frequency of appointments in adult care, having access to educational information, and better transition preparation from paediatric HCPs.ConclusionsThe experiences and perceptions of emerging adults are invaluable to guide the ongoing development and improvement of transition programmes for childhood-onset chronic illnesses.

Dataset Information

Transition structures and timing of transfer from paediatric to adult-based care after kidney transplantation in Germany: a qualitative study.

Objectives

Setting

Results

Conclusions

Trial registration number

Publications

Transition structures and timing of transfer from paediatric to adult-based care after kidney transplantation in Germany: a qualitative study.

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