Patients with cerebral palsy (CP) face lifelong consequences of their condition, and their healthcare needs evolve as they age. Transitional care for these patients is not universally available and various models have been described. In this article, the authors review the current literature surrounding transitional care for patients with CP, focusing predominantly on the neurosurgical aspects of transitional care, and they describe current approaches adopted by programs in North America. They further describe their own experience developing a transitional care clinic for patients with CP, as well as the integration of this program with a multidisciplinary clinic to address the specific challenges that growing patients face in our region.
The authors performed a literature review to identify models, barriers, and assessments of effective transitional care for CP patients. They also reviewed the recommendations of various professional societies regarding transitional care practices. They performed qualitative analysis of the relevant literature.
Transitional care has been broadly categorized into transitional care clinics with multidisciplinary teams and facilitator-led transitional care. CP patients have to overcome a variety of barriers, including those from within the healthcare system as well as environmental and personal, during the period of their transition. These challenges are all interconnected, and navigation requires healthcare professionals to work closely with patients and their caregivers. Multiple instruments are described to measure successful transition, which is likely a reflection of the unique needs that a patient may require. Current guidelines recommend that neurosurgeons select a suitable model of care based on their own local practice and available services, develop a well-defined transition plan, and identify a primary transition facilitator or care coordinator.
Providing effective transitional care to CP patients remains challenging given the different models of care and the barriers faced by them during the period of transition. In developing a transitional care program for these patients, attention must be given to the resources that are available regionally, with an effort to incorporate the best practices from successful transitional care programs.

Patients with spina bifida (SB) were historically followed by pediatric providers throughout their entire lives. Through medical and surgical advancements, now more pediatric SB patients are living well into adulthood. Nonetheless, many patients fail to successfully transition to appropriate adult healthcare providers. The goal of this study was to identify factors that helped facilitate or hinder the successful transition of adolescent and young adult (AYA) SB patients to adult providers.
A systematic review was conducted exploring the transition care of SB patients using the PubMed, Embase, and Scopus databases. Titles and abstracts from articles identified were read and selected for full-text review. Studies meeting the inclusion criteria were reviewed in full and analyzed for study design, populations, interventions, and factors influencing transition.
The primary search identified 2050 articles, of which 20 were included in the final review. Thirteen studies discussed factors relating to neurosurgical care, 8 referenced gastrointestinal and genitourinary considerations, 11 examined cognitive and psychosocial factors, and 17 explored healthcare system factors. Several barriers were consistently reported regarding communication, patient and parental attitudes and perceptions, and failure to embrace formalized and transparent protocols. Conflicting results were reported regarding the influence medical comorbidities had on a patient\'s ability to transition.
The process of transitioning AYA SB patients to adult care is complex, involving an interplay of structural and psychosocial factors. The findings in this review suggest that some barriers can be alleviated with improved education, planning, and awareness of factors that influence transition care.

BACKGROUND: Transitioning patients from their paediatric centres to adulthood is an important subject for many of these patients living with different chronic pathologies. There are few studies that assess its effectiveness in paediatric surgical pathologies. The overall objective of this scoping review is to assess the extent of the literature describing transitional programmes dedicated to young patients living with surgical conditions. The primary question will look to assess what transitional programmes are available for young patients living with surgical conditions either operated or not.
METHODS: The proposed scoping review will follow guidelines described by the Joanna Briggs Institute manual described by Peters et al in 2020. This protocol will employ the Preferred Reporting Items for Systematic review and Meta-Analysis Protocols checklist. The concept that will be included in this review is the exposure of these patients to a transition of care pathway or care programmes. Patients between the ages of 16 and 30 with a surgical condition will be included. There will be no comparator. No specific outcomes will be assessed, however, the outcomes that will be found from the transition programmes will be reviewed. A knowledge synthesis librarian will search MEDLINE All (Ovid), Embase (Ovid), Web of Science Core Collection (Clarivate) and CINAHL Complete (EBSCOhost). The literature search will be limited to 2000 onwards publications. No language or age group limitation will be applied. The reference list of all included sources of evidence will be screened for additional studies. Screening of search results and data extraction from included studies will be completed in Covidence by two independent reviewers. We will also use the PAGER (Patterns, Advances, Gaps, Evidence for practice and Research recommendations) framework to report and summarise the results.
BACKGROUND: This review does not require ethics approval. Our dissemination strategy includes peer review publication, conference presentation, co-constructed guidelines with stakeholders and policymakers.
BACKGROUND: This review is registered on OSF.

BACKGROUND: Patient engagement and integrated knowledge translation (iKT) processes improve health outcomes and care experiences through meaningful partnerships in consensus-building initiatives and research. Consensus-building is essential for engaging a diverse group of experienced knowledge users in co-developing and supporting a solution where none readily exists or is less optimal. Patients and caregivers provide invaluable insights for building consensus in decision-making around healthcare, policy and research. However, despite emerging evidence, patient engagement remains sparse within consensus-building initiatives. Specifically, our research has identified a lack of opportunity for youth living with chronic health conditions and their caregivers to participate in developing consensus on indicators/benchmarks for transition into adult care. To bridge this gap and inform our consensus-building approach with youth/caregivers, this scoping review will synthesise the extent of the literature on patient and other knowledge user engagement in consensus-building healthcare initiatives.
METHODS: Following the scoping review methodology from Joanna Briggs Institute, published literature will be searched in MEDLINE, EMBASE, CINAHL and PsycINFO databases from inception to July 2023. Grey literature will be hand-searched. Two independent reviewers will determine the eligibility of articles in a two-stage process, with disagreements resolved by a third reviewer. Included studies must be consensus-building studies within the healthcare context that involve patient engagement strategies. Data from eligible studies will be extracted and charted on a standardised form. Abstracted data will be analysed quantitatively and descriptively, according to specific consensus methodologies, and patient engagement models and/or strategies.
BACKGROUND: Ethics approval is not required for this scoping review protocol. The review process and findings will be shared with and informed by relevant knowledge users. Dissemination of findings will also include peer-reviewed publications and conference presentations. The results will offer new insights for supporting patient engagement in consensus-building healthcare initiatives.
BACKGROUND: https://osf.io/beqjr.

BACKGROUND: The increased survival rate among individuals with CHD has sparked interest in their transition to adult healthcare. Although there is a general agreement on the importance of transition interventions, the empirical evidence supporting them is insufficient. Therefore, this study aimed to conduct a systematic review and meta-analysis of transition interventions for adult healthcare in adolescents and young adults.
RESULTS: A literature search was conducted for studies comparing the quantitative effects of transition interventions with control groups, published up to March 15, 2023, in major databases (CENTRAL, Embase, PubMed, Web of Science, CINAHL, KISS, and KMbase), major clinical trial registries, academic journal sites related to the topic, and grey literature databases. Ten studies involving a total of 1,297 participants were identified. Transition interventions proved effective in enhancing disease-related knowledge (Hedge\'s g = 0.89, 95% CI = 0.29-1.48) and self-management (Hedge\'s g = 0.67, 95% CI = 0.38-0.95), as well as reducing loss to follow-up (OR = 0.41, 95% CI = 0.22-0.77). The certainty of evidence for the estimated values of each major outcome was low or very low.
CONCLUSIONS: This study supports the implementation of transition interventions by demonstrating that they can improve patients\' disease knowledge and self-management, while also promoting treatment continuity. However, since the available data on transition interventions for adolescents and young adults with CHD remain limited, the widespread adoption of structured transition interventions in the future may alter the conclusions of this study.
BACKGROUND: URL: https://www.crd.york.ac.uk/PROSPERO. Unique identifier: CRD42023399026.

BACKGROUND: Despite surgical advances for complex congenital colorectal conditions, such as anorectal malformation (ARM) and Hirschsprung disease (HD), many adolescents require transfer from specialist pediatric to adult providers for ongoing care.
METHODS: A systematic review of PubMed, MEDLINE and Embase was conducted to identify what is known about the transitional care of patients with ARM and HD (PROSPERO # CRD42022281558). The Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) framework guided our reporting of studies that focused on the transition care of 10-30-year-olds with ARM and HD.
RESULTS: Eight studies were identified that included patient and parent (n = 188), and/or clinician perspectives (n = 334). Patients and clinicians agreed that transitional care should commence early in adolescence to support transfer to adult care when a suitable level of maturation is reached. There was little evidence from patients that transfer happened in a timely or coordinated manner. Patients felt that clinicians did not always understand the significance of transfer to adult services. No models of transition care were identified. Surgeons ranked ARM and HD as the most common conditions to experience delayed transfer to adult care. Beyond pediatric surgeons, patients also highlighted the importance of general practitioners, transitional care coordinators and peer support groups for successful transition.
CONCLUSIONS: There is little research focused on transitional care for patients with ARM and HD. Given evidence of delayed transfer and poor experiences, the development of models of transitional care appears essential.

Telehealth is an emerging approach that uses technology to provide healthcare remotely. Recent publications have outlined the importance of supporting the transition to self-management of adolescents with allergic conditions. However, no synthesis of the evidence base on the use and impact of telehealth interventions for this purpose has been conducted to date. This review achieves these aims, in addition to exploring the language use surrounding these interventions, and their implementation. Four databases were searched systematically. References were independently screened by two reviewers. Methodological quality was assessed using the Mixed Methods Appraisal Tool. A narrative synthesis was undertaken. Eighteen articles were included, reporting on 15 telehealth interventions. A total of 86% targeted adolescents with asthma. Mobile applications were the most common telehealth modality used, followed by video-conferencing, web-based, virtual reality and artificial intelligence. Five intervention content categories were identified; educational, monitoring, behavioural, psychosocial and healthcare navigational. Peer and/or healthcare professional interaction, gamification and tailoring may increase engagement. The studies showed positive effects of the interventions or no difference from active controls, in self-management outcomes such as knowledge, health outcomes such as quality-of-life, and economic outcomes such as healthcare utilization. The most common implementation outcomes reported were acceptability, appropriateness, feasibility and fidelity.

BACKGROUND: The literature on transitional care in anorectal malformation (ARM) and Hirschsprung\'s disease (HD) is diverse and heterogeneous. There is a lack of standards and guidelines specific to transitional care in these conditions. We aim to establish and systematically categorize challenges and solutions related to colorectal transition care.
METHODS: Systematic review of qualitative studies from MEDLINE, EMBASE, PubMed and Scopus databases (2008-2022) was conducted to identify the challenges and solutions of healthcare transition specific to ARM and HD. Thematic analyses are reported with reference to patient, healthcare provider and healthcare system.
RESULTS: Sixteen studies from 234 unique articles were included. Fourteen themes related to challenges and solutions, each, are identified. Most challenges identified are patient related. The key challenges pertain to: (1) patient\'s lack of understanding of their disorder, resulting in over-reliance on the pediatric surgical team and reluctance towards transitioning to adult services; (2) a lack of education and awareness among adult colorectal surgeons in caring for pediatric colorectal conditions and inadequate communication between pediatric and adult teams; and (3) a lack of structured transition program and joint-clinic to meet the needs of the transitioning patients. The key solutions are: (1) fostering young adult patient\'s autonomy and independence; (2) conducting joint pediatric-adult transition clinics; and (3) ensuring a structured and coordinated transition program is available using a standardized guideline.
CONCLUSIONS: A comprehensive framework related to barriers and solutions for pediatric colorectal transition is established to help benchmark care quality of transitional care services.
METHODS: IV.
METHODS: Systematic review without meta-analysis.

The objective of this scoping review is to provide a summary of the current literature regarding adolescents and young adults with histories of cloacal anomalies. Preferred Reporting Items for Systematic Reviews and Meta-analysis Extension for Scoping Reviews were used. Data were categorized into four domains-urologic, colorectal, gynecologic/obstetric, and sexual/psychosocial. The current literature has poor study quality and mostly consists of retrospective studies of small cohorts with varying definitions of outcomes. Women with cloacal anomalies are at high risk for urologic dysfunction but can maintain kidney health and achieve social continence with medical and surgical management. Sexual function and adult healthcare transition are areas ripe for improved future research.

The transition from pediatric to adult care can be complex and difficult to navigate for adolescents with cerebral palsy (CP). We aimed to assess the current state of transitional care for young persons with CP and delineate guidelines for best practice with opportunities for intervention.
A systematic review was conducted using PRISMA guidelines to search PubMed, Embase, and Scopus databases. Articles were screened for relevance via title and abstract prior to full-text review.
Of 3151 resultant articles, 27 observational studies were included. Fourteen (52%) studies assessed clinical outcomes of patients with CP during and post-transition. Transition-associated poor outcomes included housing instability, unemployment, difficulty forming relationships, increased hospital admission rates, and decreased use of rehabilitation services. Factors associated with improved outcomes included family participation, promotion of self-efficacy, and meeting the adult team before transition. Nine (33%) studies conducted interviews with transition-age persons with CP. Key themes were a lack of transition preparedness, difficulty navigating the adult system, gaps in seamless care, and limited accessibility to specialists and environments suitable for patients with complex care needs. Four (15%) studies examined features of current transition services. Perceived barriers included poor communication within health service teams, limited adult providers accepting CP patients, and the lack of financial resources for specialized care. There was no standardized transition tool or approach.
These findings underscore the importance of a planned transition process in optimizing long-term medical and psychosocial outcomes for persons with CP. Further research, including translational, team-based, and community-engaged research, are needed.