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BackgroundIndividuals with sickle cell disease (SCD) experience poor clinical outcomes while transitioning from paediatric to adult care. Standards for SCD transition are needed. We established a Quality Improvement (QI) Collaborative that aimed to improve the quality of care for all young adults with SCD by establishing a standardised SCD transition process. This study evaluates the implementation of the Six Core Elements (6CE) of Health Care Transition, which was a fundamental component of the cluster-randomised Sickle Cell Trevor Thompson Transition Project (ST3P-UP) study.MethodsA central QI team trained 14 ST3P-UP study sites on QI methodologies, 6CE and Got Transition’s process measurement tool (PMT). Site-level QI teams included a transition coordinator, clinic physicians/staff, patients/parents with SCD and community representatives. Sites completed the PMT every 6 months for 54 months and monthly audits of 10 randomly-selected charts to verify readiness/self-care assessments and emergency care plans.ResultsOf a possible 100, the aggregate mean (±SD) PMT score for paediatric clinics was 23.9 (±13.8) at baseline, 95.9 (±6.0) at 24 months and 98.9 (±2.1) at 54 months. The aggregate mean PMT score for adult clinics was 15.0 (±13.5) at baseline, 88.4 (±11.8) at 24 months and 95.8 (±6.8) at 54 months. The overall QI Collaborative PMT score improved by 402%. At baseline, readiness/self-care assessments were current for 38% of paediatric and 20% of adult patients; emergency care plans were current for 20% of paediatric and 3% of adult patients. Paediatric clinics had one median readiness assessment shift (76%) and four median emergency care plan shifts (65%, 77%, 79%, 84%). Adult clinics experienced three median self-care assessment shifts (58%, 63%, 70%) and two median emergency care plan shifts (57%, 70%).ConclusionsThe ST3P-UP QI Collaborative successfully embedded the 6CE of Health Care Transition into routine care and increased administration of assessments and emergency care plans for transition-aged patients with SCD.

ObjectiveDeveloping and evaluating effective transition interventions for young people (16–25 years) with inflammatory bowel disease (IBD) is a high priority. While transition clinics (TCs) have been recommended, little is known about their operating structures and outcomes. This study aimed to gain insight into the value of a TC compared with direct handover care.DesignControlled mixed-methods evaluation of process outcomes, clinical outcomes and patient-reported outcomes.SettingTwo outpatient IBD clinics in the Netherlands.ParticipantsData collection included: semistructured interviews with professionals (n=8), observations during consultations with young people (5×4 hours), medical chart reviews of patients transferred 2 to 4 years prior to data collection (n=56 in TC group; n=54 in control group) and patient questionnaires (n=14 in TC group; n=19 in control group).OutcomesData were collected on service structures and daily routines of the TC, experienced barriers, facilitators and benefits, healthcare use, clinical outcomes, self-management outcomes and experiences and satisfaction of young people with IBD.ResultsAt the TC, multidisciplinary team meetings and alignment of care between paediatric and adult care providers were standard practice. Non-medical topics received more attention during consultations with young people at the TC. Barriers experienced by professionals were time restrictions, planning difficulties, limited involvement of adult care providers and insufficient financial coverage. Facilitators experienced were high professional motivation and a high case load. Over the year before transfer, young people at the TC had more planned consultations (p=0.015, Cohen’s d=0.47). They showed a positive trend in better transfer experiences and more satisfaction. Those in direct handover care more often experienced a relapse before transfer (p=0.003) and had more missed consultations (p=0.034, Cohen’s d=−0.43) after transfer.ConclusionA TC offer opportunities to improve transitional care, but organisational and financial barriers need to be addressed before guidelines and consensus statements in healthcare policy and daily practice can be effectively implemented.

IntroductionDisruption of care during transition from child and adolescent mental health services (CAMHS) to adult mental health services may adversely affect the health and well-being of service users. The MILESTONE (Managing the Link and Strengthening Transition from Child to Adult Mental Healthcare) study evaluates the longitudinal course and outcomes of adolescents approaching the transition boundary (TB) of their CAMHS and determines the effectiveness of the model of managed transition in improving outcomes, compared with usual care.Methods and analysisThis is a cohort study with a nested cluster randomised controlled trial. Recruited CAMHS have been randomised to provide either (1) managed transition using the Transition Readiness and Appropriateness Measure score summary as a decision aid, or (2) usual care for young people reaching the TB. Participants are young people within 1 year of reaching the TB of their CAMHS in eight European countries; one parent/carer and a CAMHS clinician for each recruited young person; and adult mental health clinician or other community-based care provider, if young person transitions. The primary outcome is Health of the Nation Outcome Scale for Children and Adolescents (HoNOSCA) measuring health and social functioning at 15 months postintervention. The secondary outcomes include mental health, quality of life, transition experience and healthcare usage assessed at 9, 15 and 24 months postintervention. With a mean cluster size of 21, a total of 840 participants randomised in a 1:2 intervention to control are required, providing 89% power to detect a difference in HoNOSCA score of 0.30 SD. The addition of 210 recruits for the cohort study ensures sufficient power for studying predictors, resulting in 1050 participants and an approximate 1:3 randomisation.Ethics and disseminationThe study protocol was approved by the UK National Research Ethics Service (15/WM/0052) and equivalent ethics boards in participating countries. Results will be reported at conferences, in peer-reviewed publications and to all relevant stakeholder groups.Trial registration numberISRCTN83240263; NCT03013595 (pre-results).

Background Transition from pediatric to adult diabetes care is a high risk period during which there is an increased rate of disengagement from care. Suboptimal transition has been associated with higher risks for acute and chronic diabetes-related complications. The period of emerging adulthood challenges current systems of healthcare delivery as many young adults with type 1 diabetes (T1D) default from diabetes care and are at risk for diabetes complications which are undetected and therefore untreated. Despite the importance of minimizing loss to follow-up there are no randomized control trials evaluating models of transition from pediatric to adult diabetes care. Methods/Design This is a multicentre randomized controlled trial. A minimum of 188 subjects with T1D aged between 17 and 20 years will be evaluated. Eligible subjects will be recruited from three pediatric care centres and randomly assigned in a 1:1 ratio to a structured transition program that will span 18 months or to receive standard diabetes care. The structured transition program is a multidisciplinary, complex intervention aiming to provide additional support in the transition period. A Transition Coordinator will provide transition support and will provide the link between pediatric and adult diabetes care. The Transition Coordinator is central to the intervention to facilitate ongoing contact with the medical system as well as education and clinical support where appropriate. Subjects will be seen in the pediatric care setting for 6 months and will then be transferred to the adult care setting where they will be seen for one year. There will then be a one-year follow-up period for outcome assessment. The primary outcome is the proportion of subjects who fail to attend at least one outpatient adult diabetes specialist visit during the second year after transition to adult diabetes care. Secondary outcome measures include A1C frequency measurement and levels, diabetes related emergency room visits and hospital admissions, frequency of complication screening, and subject perception and satisfaction with care. Discussion This trial will determine if the support of a Transition Coordinator improves health outcomes for this at-risk population of young adults. Trial registration Trial Registration Number: NCT01351857

Adolescents with inflammatory bowel disease (IBD) transitioning to adult care is often deemed a challenging period for patients, their carers, and practitioners. The use of structured transition programs is increasingly incorporated into standards of care, yet the optimal format remains unknown. The aim of this study is to carry out a systematic review of structured transition programs and their components to assess the impact on disease-specific and transition-related outcomes. A systematic review (PROSPERO ID: CRD42023380846) was performed across 4 databases (PubMed, CINAHL, CENTRAL, and EMBASE) and relevant publications up to March 2023 were reviewed. Studies evaluating either a structured transition program or targeted intervention which also measured a transition- and/or disease-related outcomes were included for evaluation in accordance with the PRISMA statement. Three thousand four hundred and thirty-two articles were identified and 29 included in the final review. A structured transition program was reported in 21 studies and 8 investigated discrete transition-related interventions. The key transition-related outcomes included knowledge, self-efficacy, adherence, clinic attendance, and transition readiness which overall improved with the use of structured transition programs. Similarly, interventions consistently improved relapse/admission rates and corticosteroid use across most studies, although the benefit in hospitalization and surgical rates was less evident. Methodological limitations alongside heterogeneity in study design and outcome measures impacted on the quality of the evidence as assessed by the GRADE rating. Transition- and medical-related outcomes for adolescents with IBD have been shown to benefit from structured transition programs but practices vary greatly between centers. There is no current standardized transition model for patients with IBD prompting further research to guide future development of guidelines and models of care.

The risks of poor transition include delayed and inappropriate transfer that can result in disengagement with healthcare. Structured transition care can improve control of chronic digestive diseases and long-term health-related outcomes. These are the first nationally developed guidelines on the transition of adolescent and young persons (AYP) with chronic digestive diseases from paediatric to adult care. They were commissioned by the Clinical Services and Standards Committee of the British Society of Gastroenterology under the auspices of the Adolescent and Young Persons (A&YP) Section. Electronic searches for English-language articles were performed with keywords relating to digestive system diseases and transition to adult care in the Medline (via Ovid), PsycInfo (via Ovid), Web of Science and CINAHL databases for studies published from 1980 to September 2014. The quality of evidence and grading of recommendations was appraised using the Grading of Recommendations Assessment, Development and Evaluation (GRADE) system. The limited number of studies in gastroenterology and hepatology required the addition of relevant studies from other chronic diseases to be included.These guidelines deal specifically with the transition of AYP living with a diagnosis of chronic digestive disease and/or liver disease from paediatric to adult healthcare under the following headings;1. Patient populations involved in AYP transition2. Risks of failing transition or poor transition3. Models of AYP transition4. Patient and carer/parent perspective in AYP transition5. Surgical perspective

Many adolescents may experience a deterioration in metabolic control—attributable to one or several of the following: endocrine changes leading to increased insulin resistance (B) erratic meal and exercise patterns (C) poor adherence to treatment regimens (C) eating disorders (C) hazardous and risk-taking behaviors (C/E) It is essential to develop appropriate communication skills to facilitate teaching and education, and recognize the need for privacy and confidentiality for this age group (E). In the context of type 1 diabetes, many adolescents may experience a deterioration in metabolic control often attributable to erratic meal and exercise patterns, poor adherence to treatment regimens, hazardous and risk-taking behaviors, disordered eating behaviors, other mental health issues, and endocrine changes associated with puberty, leading to greater insulin resistance. Understand that attending to the developmental needs of young people may be just as important for quality of life as diabetes-specific treatment. When there is conflict between the needs of diabetes management and the adolescent's social development and peer activities, a stepwise approach with interim achievable goals can be used to bridge competing priorities Providing well-directed education to help understand the physiological changes of puberty, their effect on insulin dose, difficulties of weight control and dietary regulation.

Abstract Background The incidence of pediatric inflammatory bowel disease (IBD) is rising, and there is an increasing need to support adolescents when they transition to adult care. Evidence supports the use of a structured transition process but there is great variation across Australasia. The study aim was to develop evidence and expert opinion–based consensus statements to guide transitional care services in IBD. Methods A modified UCLA-RAND methodology was employed to develop consensus statements. An IBD expert steering committee was formed and a systematic literature review was conducted to guide the drafting of consensus statements. A multidisciplinary group was formed comprising 16 participants (clinicians, nurses, surgeons, psychologists), who anonymously voted on the appropriateness and necessity of the consensus statements using Likert scales (1 = lowest, 9 = highest) with a median ≥7 required for inclusion. Patient support groups, including direct input from young people with IBD, informed the final recommendations. Results Fourteen consensus statements were devised with key recommendations including use of a structured transition program and transition coordinator, mental health and transition readiness assessment, key adolescent discussion topics, allied health involvement, age for transition, and recommendations for clinical communication and handover, with individualized patient considerations. Each statement reached median ≥8 for appropriateness, and ≥7 for necessity, in the first voting round, and the results were discussed in an online meeting to refine statements. Conclusions A multidisciplinary group devised consensus statements to optimize pediatric to adult transitional care for adolescents with IBD. These guidelines should support improved and standardized delivery of IBD transitional care within Australasia. Lay Summary Transitional care practices for adolescents with inflammatory bowel disease vary across Australasia, and a need for standardized care has been identified. A multidisciplinary team developed Consensus Guidelines to facilitate standardized transition from the pediatric to adult healthcare setting across Australasia.

The aim of this scoping review was to identify the core components of interventions that facilitate successful transition from child and adolescent mental health services to adult mental health services. In the absence of rigorous evaluations of transition program effectiveness for transitioning youth with mental health care needs, these core components can contribute to informed decisions about promising program and intervention strategies. This review examined data from 87 peer-reviewed and non-academic documents to determine the characteristics that support the transition process and to identify opportunities for system and program improvement. Data were extracted and synthesized using a descriptive analytic framework. A major finding of this review is a significant lack of measurable indicators in the academic and gray literature. This review did identify 26 core components organized within the framework of the six core elements of healthcare transitions. Policy makers, practitioners, and administrators can use the core components to guide decisions about transition program and intervention content. Confirmation of the impact of these core program components on youth outcomes awaits the conduct of rigorous randomized trials. Future research also needs to explicitly focus on the development of indicators to evaluate transition programs and interventions.

Abstract Transitional care for patients with IBD focuses on efforts to successfully transfer care from pediatric to adult providers while encouraging the assumption of health care responsibility. As 25% of patients will be diagnosed with IBD before the age of 18 years, many will undergo this process. Efforts to enhance this process have included transition clinics and other means to improve patient comfort with transition and develop the skill of health care self-management. Currently, most pediatric practitioners provide transition care with informal education and emphasize independence without formal programs. A variety of tools to assess transition readiness have been developed. Given the varied disease process, often varied and subjective outcomes, and lack of studies such as randomized controlled trials, further data are necessary to determine the best avenue to transition and assess outcomes. Critically relevant to providing adequate care to transitioning patients includes understanding the development of self-management skills and the developmental processes relevant to young adults with IBD. Transition represents an area for quality improvement, and although progress has been made in recognition and promotion of transition practices, future directions in research will allow improved understanding of the evidence-based practices and needs of these individuals to further enhance their care.