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      We mind your step: understanding and preventing drop-out in the transfer from paediatric to adult tertiary endocrine healthcare


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          Transition from paediatric to adult endocrinology can be challenging for adolescents, their families and healthcare professionals. Previous studies have shown that up to 25% of young adults with endocrine disorders are lost to follow-up after moving out of paediatric care. This poses a health risk for young adults, which can lead to serious and expensive medical acute and long-term complications.


          In order to understand and prevent dropout, we studied electronic medical records of patients with endocrine disorders. These patients were over 15 years old when they attended the paediatric endocrine outpatient clinic (OPC) of our hospital in 2013–2014 and should have made the transfer to adult care at the time of the study.


          Of 387 adolescents, 131 had an indication for adult follow-up within our university hospital. Thirty-three (25%) were lost to follow-up. In 24 of them (73%), the invitation for the adult OPC had never been sent. We describe the failures in logistic processes that eventually led to dropout in these patients.


          We found a 25% dropout during transfer from paediatric to adult tertiary endocrine care. Of all dropouts, 73% could be attributed to the failure of logistic steps. In order to prevent these dropouts, we provide practical recommendations for patients and paediatric and adult endocrinologists.

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          Transition of care for adolescents from paediatric services to adult health services.

          There is evidence that the process of transition from paediatric (child) to adult health services is often associated with deterioration in the health of adolescents with chronic conditions.Transitional care is the term used to describe services that seek to bridge this care gap. It has been defined as 'the purposeful, planned movement of adolescents and young adults with chronic physical and medical conditions from child-centred to adult-oriented health care systems'. In order to develop appropriate services for adolescents, evidence of what works and what factors act as barriers and facilitators of effective interventions is needed.
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            Supporting the health care transition from adolescence to adulthood in the medical home.

            Optimal health care is achieved when each person, at every age, receives medically and developmentally appropriate care. The goal of a planned health care transition is to maximize lifelong functioning and well-being for all youth, including those who have special health care needs and those who do not. This process includes ensuring that high-quality, developmentally appropriate health care services are available in an uninterrupted manner as the person moves from adolescence to adulthood. A well-timed transition from child- to adult-oriented health care is specific to each person and ideally occurs between the ages of 18 and 21 years. Coordination of patient, family, and provider responsibilities enables youth to optimize their ability to assume adult roles and activities. This clinical report represents expert opinion and consensus on the practice-based implementation of transition for all youth beginning in early adolescence. It provides a structure for training and continuing education to further understanding of the nature of adolescent transition and how best to support it. Primary care physicians, nurse practitioners, and physician assistants, as well as medical subspecialists, are encouraged to adopt these materials and make this process specific to their settings and populations. Copyright © 2011 by the American Academy of Pediatrics.
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              Patient navigators for people with chronic disease: A systematic review

              Background People with chronic diseases experience barriers to managing their diseases and accessing available health services. Patient navigator programs are increasingly being used to help people with chronic diseases navigate and access health services. Objective The objective of this review was to summarize the evidence for patient navigator programs in people with a broad range of chronic diseases, compared to usual care. Methods We searched MEDLINE, EMBASE, CENTRAL, CINAHL, PsycINFO, and Social Work Abstracts from inception to August 23, 2017. We also searched the reference lists of included articles. We included original reports of randomized controlled trials of patient navigator programs compared to usual care for adult and pediatric patients with any one of a defined set of chronic diseases. Results From a total of 14,672 abstracts, 67 unique studies fit our inclusion criteria. Of these, 44 were in cancer, 8 in diabetes, 7 in HIV/AIDS, 4 in cardiovascular disease, 2 in chronic kidney disease, 1 in dementia and 1 in patients with more than one condition. Program characteristics varied considerably. Primary outcomes were most commonly process measures, and 45 of 67 studies reported a statistically significant improvement in the primary outcome. Conclusion Our findings indicate that patient navigator programs improve processes of care, although few studies assessed patient experience, clinical outcomes or costs. The inability to definitively outline successful components remains a key uncertainty in the use of patient navigator programs across chronic diseases. Given the increasing popularity of patient navigators, future studies should use a consistent definition for patient navigation and determine which elements of this intervention are most likely to lead to improved outcomes. Trial registration PROSPERO #CRD42013005857

                Author and article information

                Endocr Connect
                Endocr Connect
                Endocrine Connections
                Bioscientifica Ltd (Bristol )
                22 April 2022
                01 May 2022
                : 11
                : 5
                : e220025
                [1 ]Department of Internal Medicine-Endocrinology , Erasmus University Medical Centre, Rotterdam, the Netherlands
                [2 ]Research Centre Innovations in Care , Rotterdam University of Applied Sciences, Rotterdam, the Netherlands
                [3 ]Department of Paediatric Endocrinology , Erasmus University Medical Centre, Rotterdam, the Netherlands
                [4 ]Academic Centre for Growth , Erasmus University Medical Centre, Rotterdam, the Netherlands
                [5 ]Dutch Growth Research Foundation , Rotterdam, the Netherlands
                [6 ]Diabeter , National Diabetes Care and Research Centre, Rotterdam, the Netherlands
                [7 ]Department of Paediatrics , Leiden University Medical Centre, Leiden, the Netherlands
                Author notes
                Correspondence should be addressed to L C G de Graaff: l.degraaff@ 123456erasmusmc.nl

                This paper forms part of a special series collated by the European Reference Network on Rare Endocrine Conditions, celebrating its fifth year. The guest editors for this section are Violeta Iotova, Jérôme Berherat, and George Mastorakos.

                Author information
                © The authors

                This work is licensed under a Creative Commons Attribution-NonCommercial 4.0 International License.

                : 07 March 2022
                : 22 April 2022

                transition to adult care,adolescent,young adult,paediatrics,endocrinology


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