Journal of transition medicine最新文献

{"title":"Somatic outcomes of young people with chronic diseases participating in transition programs: a systematic review","authors":"J. Becker, Esther Ravens, L. Pape, G. Ernst","doi":"10.1515/jtm-2020-0003","DOIUrl":"https://doi.org/10.1515/jtm-2020-0003","url":null,"abstract":"Abstract Introduction There is growing evidence that the health of young people with chronic health conditions deteriorates during the transfer from child-centred to adult-oriented health care. Risks include not only the deterioration of health status in general but also the occurrence of secondary diseases and adverse events. Transition programs have been implemented. However, there is a lack of evidence about whether they reduce these risks and which interventions should be principally included. Evidence-based guidelines for the transition of young people should be introduced. In this study we therefore aim to summarise actual evidence on somatic outcomes during the transition period. Methods A systematic literature review was conducted. Two independent reviewers searched in electronic databases (Cochrane, Embase, PubMed, Web of Science) for intervention studies that aimed to improve transition. Last update of search was October 31st 2018. Grey literature was also searched. Studies were included if they examined participants aged 11 years or older suffering from a chronic health condition and evaluated interventions aimed to improve somatic outcomes after transition. Controlled trials or studies with a measurement before and after intervention were considered. The certainty of evidence was assessed using the GRADE approach. Additionally, each study was graded using a modified grading scale based on GRADE. Results 28 studies met the inclusion criteria. Patients suffered from different chronic conditions such as type 1 diabetes, solid organ transplantation, inflammatory bowel disease or cystic fibrosis. Interventions had different components such as transition checklists, workshops, web-based interventions, transition plans, joint visits or transition coordinators. Outcomes included mortality and morbidity. They varied according to chronic condition. Thirteen studies showed beneficial effects in the intervention group or in post-intervention measurements. The certainty of evidence was very low. Conclusion A considerable number of studies evaluating transition interventions was identified. Transition interventions had some beneficial effects. Workshops, joint visits and longer or multidisciplinary appointments may be particularly effective components. Transition guidelines could be based on these results. However, due to the limitations of the included studies it is difficult to draw firm conclusions. More research is needed to further evaluate the effectiveness of transition interventions. It should address the deficits identified from prior studies, such as poor study design, short follow-up time or small sample sizes.","PeriodicalId":93792,"journal":{"name":"Journal of transition medicine","volume":" ","pages":""},"PeriodicalIF":0.0,"publicationDate":"2020-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1515/jtm-2020-0003","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"42721595","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"A need-adapted transition program after pediatric kidney transplantation","authors":"S. Rieger, Dirk Bethe, Angela Bagorda, D. Treiber, J. Beimler, C. Sommerer, B. Höcker, A. Fichtner, T. Vinke, M. Zeier, G. Hoffmann, B. Tönshoff","doi":"10.1515/jtm-2018-0004","DOIUrl":"https://doi.org/10.1515/jtm-2018-0004","url":null,"abstract":"Abstract A successful transition of renal transplant recipients from pediatric to adult care requires a structured, need-adapted and multidisciplinary approach to preserve renal graft function during this critical period of life. In this article we present our clinical protocol for transition from pediatric to adult care, which we developed on the basis of the International Society of Nephrology (ISN)/International Pediatric Nephrology Association (IPNA) consensus guidelines influenced by our own experience. This transition program was established in our center in July 2017. The entire transition process is structured and accompanied by a transition key worker (social worker). From 12 years of age we train pediatric renal transplant recipients in medical knowledge, self-management skills and networking with self-help groups. The training is adapted to the individual patient‘s intellectual ability, lasts about 10 years and takes place with increasing intensity. Repeatedly we perform standardized informational interviews and check patient’s knowledge of transplant-related topics. Psychosocial and educational issues are evaluated concomitantly. The actual transfer takes place in a pediatric-adult-transition clinic. Relevant medical and psychosocial aspects are discussed and the future treatment regimen is established. The date of transfer is adapted to the individual patient’s need; it varies between 18 and 24 years of age. In periods of increased risk for non-adherence the transfer is postponed to intensify the efforts for training and assistance. After transfer a standardized evaluation of each individual patient takes place focusing on medical and psychosocial issues and on satisfaction with the transition process. Collection of these data is still in progress and will be analyzed systematically at a later stage in order to evaluate the impact of this new transition program on the stability of transplant function. That analysis might serve as a basis for negotiations about refunding with health insurance companies.","PeriodicalId":93792,"journal":{"name":"Journal of transition medicine","volume":" ","pages":""},"PeriodicalIF":0.0,"publicationDate":"2019-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1515/jtm-2018-0004","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"49105339","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Accessing primary health care services for transition-aged young adults with cerebral palsy; perspectives of young adults, parents, and physicians","authors":"E. Brandon, M. Ballantyne, M. Penner, André Lauzon, E. McCarvill","doi":"10.1515/jtm-2019-0004","DOIUrl":"https://doi.org/10.1515/jtm-2019-0004","url":null,"abstract":"Abstract Background Young adults with childhood-onset disabilities experience challenges with accessing age appropriate primary health care services as they transition from pediatric to adult health care services. They often experience a negative impact on their health with associated long-term health and social concerns, disease complications and increased use of emergency services once transitioned to adult services. This is particularly challenging for youth with cerebral palsy (CP) due the complexity of their medical needs. The aim of this study was to explore experiences with accessing or providing primary care services for transitioned-aged young adults with CP from young adult, parent, pediatrician and primary care physician perspectives. Methods A qualitative descriptive design was conducted to identify the challenges and facilitators for transitioned aged young adults with accessing primary, adult care services. Semi-structured interviews were conducted with 16 participants within the circle of care (4 adults with CP, 4 parents, 4 pediatricians and 4 primary healthcare physicians) for individuals with CP in Toronto, Canada. Interviews were audio-recorded and transcribed verbatim. Qualitative analysis guided both the data collection and the data analysis processes. Results Data analysis revealed that all participant groups reported transition challenges with respect to accessibility, the suitability of some primary care environments for caring for individuals with complex care needs, gaps in seamless care, and limited time and funding when receiving or providing primary care services to young adults with CP. Discussion There is a greater demand for adult healthcare providers now to deliver services for adults with childhood onset disabilities. Transition-aged young adults with CP and complex medical needs have increased challenges with accessing primary care services. Considering the following would improve primary care services transition for this population with complex medical needs: ongoing partnering between pediatric and adult health care streams to promote seamless care; connection to team-based primary care services where family physicians, subspecialties and interprofessional practitioners work together to provide joint care planning; salary compensation for increased service needs due to medical complexity; accessible sites; and development of guidelines for transitioning youth/young adults with complex care needs.","PeriodicalId":93792,"journal":{"name":"Journal of transition medicine","volume":" ","pages":""},"PeriodicalIF":0.0,"publicationDate":"2019-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1515/jtm-2019-0004","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"46986949","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"My experience of life with Juvenile Idiopathic Arthritis and transitioning from paediatric care to adult services","authors":"N. Costello","doi":"10.1515/jtm-2019-0005","DOIUrl":"https://doi.org/10.1515/jtm-2019-0005","url":null,"abstract":"","PeriodicalId":93792,"journal":{"name":"Journal of transition medicine","volume":"1 1","pages":""},"PeriodicalIF":0.0,"publicationDate":"2019-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1515/jtm-2019-0005","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"43126760","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Information needs of young people with cerebral palsy and their families during the transition to adulthood: a scoping review","authors":"M. Freeman, D. Stewart, C. Cunningham, J. Gorter","doi":"10.1515/jtm-2018-0003","DOIUrl":"https://doi.org/10.1515/jtm-2018-0003","url":null,"abstract":"Abstract The transition to adulthood is a developmental phase which occurs as young people move from adolescence into adulthood. Young people with disabilities, including cerebral palsy (CP), and their families have reported challenges during the transition to adulthood because they are required to move to adult supports and services, which are often fragmented and bring about new questions and expectations to find necessary supports. Young people and their parents have been found to lack information about where to find services in adulthood, how to access the services and what to ask during the transitional process. The aim of this scoping review was to explore the information needs of young people with CP and their families during the transition to adulthood. The goal is to map the current published evidence within the transition to adulthood literature base to explore what is known about information needs during the transition to adulthood of young people with CP and their parents. This review seeks to synthesize what is known about information content, timing, methods of provision and delivery. Databases searched were OVID Medline, CINAL, ERIC, EMBASE, PsycINFO, Web of Science, Social Science Abstracts and Sociological Abstracts. Initially 675 articles were retrieved. Four hundred and forty-two articles were selected for title review. Two hundred and five articles remained for abstract review. Seventeen articles were included for full-text review. Eleven articles were included in this review. Data were organized into five themes: (1) identified information needs during the transition to adulthood (content), (2) identified recommended providers of information during the transition to adulthood (who), (3) identified delivery methods of information during the transition to adulthood (how), (4) identified timing of information delivery of information during the transition to adulthood (when) and (5) location of information provided during the transition to adulthood (where). This review found that young people with CP, their families and adult providers all possess information needs during the transition to adulthood. Young people with CP and their families seek information about what adult services will look like and how to access supports. Adult providers require information about CP. Youth with CP prefer individualized information be delivered to them when needed rather than presented in group sessions or via paper handout. Other recommendations included the development of parent support networks to assist parents in the transition to adulthood. The opportunity to learn from real-life experiences was also viewed as an important source of information as well as method to provide information.","PeriodicalId":93792,"journal":{"name":"Journal of transition medicine","volume":" ","pages":""},"PeriodicalIF":0.0,"publicationDate":"2018-08-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1515/jtm-2018-0003","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"49084314","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Effectiveness of a generic transition-oriented patient education program in a multicenter, prospective and controlled study","authors":"I. Menrath, G. Ernst, R. Szczepanski, K. Lange, F. Bomba, D. Staab, H. Muehlan, U. Thyen","doi":"10.1515/jtm-2018-0001","DOIUrl":"https://doi.org/10.1515/jtm-2018-0001","url":null,"abstract":"Abstract Objectives For young people (YP) with a chronic condition growing up is a challenging process. This stage of life is associated with a higher risk for non-adherence, insufficient disease control, acute deteriorations and irregular consultations. Patient education programs can support YP cope with the independent disease management and the transition into adulthood. However, there is a lack of transition-oriented patient education programs for most chronic conditions. In this study, an existing generic transition-oriented education program was expanded by a module for parents and evaluated in a multicenter study all over Germany. Methods YP with chronic conditions and their parents were quasi-randomized into a control group (CG) and an intervention group (IG). The IG took part in the 1.5-day standardized education program ModuS-T while the CG received treatment as usual. The education program was designed as a compact workshop in a group setting for youth (15–24 years) and their parents. The education program contained youth specific topics such as the transfer to adult care, the influence of disease on the daily life of YP, and other important issues like detachment from parents, occupational career, intimate relationships and family planning. The parent module dealt with the topics transition from child-centered to adult health services, and supporting children to become adults. The program focused on improving competencies relevant for transition and self-management skills of the families. Satisfaction with the program, transition-specific knowledge, transition competencies, patient activation and health-related quality of life (HRQoL) were measured at baseline and after 4 weeks. Results A total of 300 YP (overall mean age 17.6 years; 47% female; IG = 166, CG = 134) with 12 different conditions and their parents participated in 37 transition programs. The participants were highly satisfied with the program. The program significantly affected transition-specific knowledge, transition competence and patient activation (p < 0.001). There were no effects on HRQoL. Conclusion The generic transition-oriented education program empowers YP with chronic conditions and their parents in the transition process. Due to a modular approach, the program is successful in a variety of chronic conditions.","PeriodicalId":93792,"journal":{"name":"Journal of transition medicine","volume":"1 1","pages":""},"PeriodicalIF":0.0,"publicationDate":"2018-05-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1515/jtm-2018-0001","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"44219090","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"The use of the Rotterdam Transition Profile: 10 years in review","authors":"Sofía Zhang-Jiang, J. Gorter","doi":"10.1515/jtm-2018-0002","DOIUrl":"https://doi.org/10.1515/jtm-2018-0002","url":null,"abstract":"Abstract The aim of this literature review was to describe the use and utility of the Rotterdam Transition Profile (RTP), as we near the tenth year since its publication in 2008. It is a tool to summarize a youth’s transition process to adulthood by classifying various domains of participation and health care into developmental stages. This review provided a comprehensive synthesis of available knowledge on the RTP by summarizing published and grey literature. Using search terms related to transition, social participation, and questionnaire, a systematic search was conducted for literature up to November 2017 in MEDLINE and Embase databases, and was supplemented with a hand-search using Google Scholar and a general internet search using Google Search. Inclusion criteria were specified to determine the papers selected for review, yielding fifty-five materials for detailed review. Combined analysis of published and grey literature identified nine papers that used some form of the RTP as a measure, 18 materials that cited the RTP or its domains but did not employ it as a measure, and twenty-eight materials that cited the original RTP development and validation paper for information not directly related to the RTP. The literature demonstrated that the RTP seems to be a useful tool to describe and monitor the transition process of adolescents and young adults, in both research and clinical settings. While it has been used with youth of 14–31 years of age across genders and health conditions, more evidence is needed to demonstrate its psychometric properties beyond construct validity in young adults with cerebral palsy.","PeriodicalId":93792,"journal":{"name":"Journal of transition medicine","volume":" ","pages":""},"PeriodicalIF":0.0,"publicationDate":"2018-05-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1515/jtm-2018-0002","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"44893240","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Transition – the next step","authors":"L. Pape, M. Oldhafer","doi":"10.1515/jtm-2017-0001","DOIUrl":"https://doi.org/10.1515/jtm-2017-0001","url":null,"abstract":"The transition from pediatric to adult care has come increasingly under the spotlight in many subspecialties in medicine in the last few years. The main driving force for the implementation of local transition programs is the pediatrician who regularly sees patients unable to find adequate continuous care after transfer to adult medicine. For physicians treating adult patients the number of patients after transfer is small, so consequently the problem of transition is frequently unremarked. Most often, the success of a transition programdepends on individual “transition champions” who are proactive in the structured transition process and without whom implementation of long-lasting transition structures is very difficult. Unfortunately, there is a lack of national transition programs, mainly because most health systems are unwilling to finance the extra costs of transition, without considering that these “costs” will be an investment leading to fewer total health care costs for patients in the long run. Unfortunately, such evaluations have only been performed in single diseases up to now [1]. However, research in transition medicine has grown within the last few years. Published research initially presented experiences from local transitionprograms focused on single diseases and on the barriers of transition [2], but more recently there have been reports on diseaseindependent transition programs [3] and scientific evaluations of these have also begun. The first randomized trials in transition medicine have been initiated [4, 5] and transition guidelines from different national and international societies are now available [6–8]. Education programs for patients and parents have also been an area of research within the last few years [9, 10]. A Cochrane database analysishas recently reported that there is insufficient evidence to support interventions in transitionalmedicine and there is only low-grade evidence for a positive effect of educational programs, but it has not made any conclusions about the usefulness of transition programs themselves. The Cochrane authors conclude that there is considerable scope for the rigorous evaluation of other models of transitional care, reporting on clinical outcomes with longer term follow-up inorder toprovideevidence in this area [11]. Unfortunately, publication of transition science is often difficult. Many medical, organ-focused journals are not interested in public health issues and do not publish qualitative research, but neither is transition a focus in journals specializing in adolescent or public health. This leads to an urgent need for a publication/journal whose emphasis is solely on transition medicine. Over the past few years, the German Society of Transition Medicine has discussed this need and has now reached a decision to found a Journal of Transition Medicine, not only as the official society journal but also as a journal for researchersworking in transitionmedicineworldwide.We have decided on ","PeriodicalId":93792,"journal":{"name":"Journal of transition medicine","volume":" ","pages":""},"PeriodicalIF":0.0,"publicationDate":"2018-04-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1515/jtm-2017-0001","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"48568086","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}