Incidence of Pediatric to Adult Transition Among Tracheotomy Patients.

OBJECTIVE: To estimate the incidence and identify predictors of pediatric tracheostomy patients who transition into adulthood with a tracheostomy. METHODS: We conducted a retrospective analysis of pediatric tracheostomy patients treated at a single tertiary care pediatric hospital between 2009 and 2022. Patient demographics, comorbidities, tracheostomy outcomes, including decannulation and mortality rates, and the status of those alive with a tracheostomy at adulthood were compared. RESULTS: Of the 663 children who underwent a tracheostomy, 103 (15.5%) would have surpassed 18 years by September 1, 2023. Detailed breakdown: 26 (25%) were alive with a tracheostomy, 35 (34%) had been decannulated, 25 (24%) had passed away, and 17 (16.5%) were lost to follow-up. Patients who retained their tracheostomies into adulthood were more likely to be older at tracheostomy placement (mean age 14.3 vs. 1.7 years, p < 0.001), Hispanic (43.7% vs. 30.5%, p = 0.003), not ventilated at initial discharge (41% vs. 24%, p < 0.001), and have severe neurocognitive disabilities (72% vs. 53%, p < 0.001). Logistic regression identified older age at tracheostomy placement (OR = 1.35, 95% CI [1.24-1.48]) and severe neurocognitive disability (OR = 6.20, 95% CI [2.13-18.09]) as significant predictors of maintaining a tracheostomy into adulthood. CONCLUSIONS: Older age at tracheostomy placement and severe neurocognitive disabilities significantly predict the transition of pediatric tracheostomy patients to adult care with their tracheostomies. These findings highlight the need for specialized transition programs tailored to the needs of this unique population. LEVEL OF EVIDENCE: IV Laryngoscope, 2024.

Development of MyREADY Transition BBD Mobile App, a Health Intervention Technology Platform, to Improve Care Transition for Youth With Brain-Based Disabilities: User-Centered Design Approach.

BACKGROUND: Transition from pediatric to adult health care varies and is resource intensive. Patient-centered health information technology (HIT) interventions are increasingly being developed in partnership with patients. OBJECTIVE: This study aims to develop an internet-based mobile app intervention for patients with brain-based disabilities to improve transition in care readiness. METHODS: The app was designed for patients aged 15 to 17 years with brain-based disabilities having the ability to use a mobile app. A multidisciplinary team, an industry partner, and a patient and family advisory council was assembled. We hypothesized that existing tools could be migrated into the app to address education, empowerment, and navigation. We used cognitive learning theory to support chapters targeting transition in care skill sets. We used the agile iterative methodology to engage stakeholders. RESULTS: We developed a novel MyREADY Transition HIT platform. An electronic mentor supported cognitive learning with messaging, quizzes, rewards, and videos. We used gaming to guide navigation through a fictitious health care city. Adapting existing tools was achieved by the patient and family advisory council requesting personalization. Our iterative design required time-consuming back-end technology management. Developing the platform took 24 months instead of our grant-approved 12 months, impacting the onset of the planned trial within the allotted budget. CONCLUSIONS: A novel patient-centered HIT platform to improve health care transition was successfully developed in partnership with patients and industry. Careful resource management was needed to achieve timely delivery of the end product, flagging the cautious planning required to deliver HIT tools in time for the much-needed trials informing their clinical application. TRIAL REGISTRATION: ClinicalTrials.gov NCT03852550; https://clinicaltrials.gov/study/NCT03852550.

A quality improvement evaluation of a standardized intervention for children with medical complexity transitioning to adult care.

Children with medical complexity have medical fragility, chronic disease, technology dependence, and high healthcare use. Their transition to adult health care at age 18 involves medical and social elements and follows no standardized process. Our goal was to improve transition readiness in children with medical complexity using a transition intervention within a Complex Care program. All children with medical complexity aged 14 to 18 were included in this quality improvement (QI) project (n = 54). We conducted a pre- and post-intervention chart review to assess transition outcomes and implemented a transition intervention for 6 months, which included an age-stratified checklist, charting template, and transition rounds. Before the intervention, 72% of 17- to 18-year-old patients had documented transition discussions, which increased to 86%. Patients with a family physician increased as well (61% to 73% for 17- to 18-year-olds). Three transition education rounds were held. The intervention increased transition readiness, provided tools to facilitate transition, and created a forum for conversation.

Optimising healthcare transition of adolescents and young adults to adult care: a perspective statement of the Italian Society of Obesity.

The transition to adult health care (HCT, Health Care Transition), is the purposeful, planned movement of patients from paediatric to adult services. For the adolescent living with obesity (ALwO), the HCT represents a crucial window for effective intervention that can help improve body weight, adiposopathy, and metabolic complications. Nevertheless, no transition guidelines, models, and tools have been developed for these patients. The present statement of the Italian Society of Obesity examines the critical transition of ALwO from paediatric to adult healthcare. It synthesises current knowledge and identifies gaps in HCT of ALwO. Drawing on successful practices and evidence-based interventions worldwide, the paper explores challenges, including disparities and barriers, while advocating for patient and family involvement. Additionally, it discusses barriers and perspectives within the Italian health care scenario. The need for specialised training for healthcare providers and the impact of transition on healthcare policies are also addressed. The conclusions underscore the significance of well-managed transitions. The SIO recognises that without proper support during this transition, ALwOs risk facing a gap in healthcare delivery, exacerbating their condition, and increasing the likelihood of complications. Addressing this gap requires concerted efforts to develop effective transition models, enhance healthcare provider awareness, and ensure equitable access to care for all individuals affected by obesity. The document concludes by outlining avenues for future research and improvement.

The importance of genetic counselling for turner syndrome transition.

The healthcare transition (HCT) is the process of planning, monitoring, and adjusting the clinical management from children's care to adult specialists. Although this practice is common for all children, it is especially crucial (and challenging) for those with chronic disorders and genetic conditions that also involve mental health issues, requiring a multidisciplinary approach. In this review, we aim to assess the current status of transition for girls and young women with Turner syndrome (TS) as a model as it is one of the most common sexual chromosomal aneuploidies. We first describe the syndrome highlighting some of the challenges regarding behavioural, neurodevelopmental, and mental health characteristics that must be addressed for a successful HCT. Finally, we emphasize the importance of genetic counselling within multidisciplinary groups for the successful implementation of HCT, especially for girls and women with TS, to facilitate their adaptation and adhesion to the transition process.

Health care transition models in spina bifida care: evidence-based lessons in support of neurosurgical practice.

OBJECTIVE: The purpose of this study was to conduct a literature review on transition programs from pediatric to adult care and the role of neurosurgery as individuals with spina bifida (SB) transition, and to provide a framework for neurosurgical providers to assist in the transition to adult-centered care. METHODS: A comprehensive literature review was conducted according to the PRISMA statement, with a search in Medline and Embase to identify US clinical programs reporting on their experiences establishing a transition program for adolescents and young adults with SB. Data were collected for authors, year, transition clinic location, model of care for transition clinic, ages served, and specialty clinical team. RESULTS: The literature search yielded 698 articles, 5 of which met the inclusion criteria. These 5 studies included 4 transition programs for which models of care and approach to transition, clinical services involved, establishment of goals, and age of initiation and transition were identified. All programs described setting transition goals, ranging from community services, to self-management, to health care navigation, to patient-driven goals, with 1 program reporting a quality-of-life measurement component to their model. CONCLUSIONS: Robust SB transition programs can be established by applying the expanded chronic care model, reviewing lessons learned by other programs, advocating at the institutional level, and seeking support via professional organizations. While the comprehensive role of neurosurgical providers in these programs is still being defined, a shared vision of enhancing the health and quality of life for individuals with SB and their families is needed by all subspecialists involved.

A Cross-Sectional Study of Disparities in Healthcare Transition in Cerebral Palsy.

Background: Cerebral palsy (CP) is the most common physical disability among children, affecting their lifespan. While CP is typically nonprogressive, symptoms can worsen over time. With advancements in healthcare, more children with CP are reaching adulthood, creating a greater demand for adult care. However, a significant lack of adult healthcare providers exists, as CP is predominantly considered a pediatric condition. This study compares the transition experiences of children with CP compared to those with other developmental disabilities (DDs) and typically developing children (TDC). Methods: This study utilizes cross-sectional data from the National Survey of Children's Health (NSCH) from 2016-2020, including 71,973 respondents aged 12-17. Children were categorized into three groups: CP (n = 263), DD (n = 9460), and TDC (n = 36,053). The analysis focused on the receipt of transition services and identified demographic and socioeconomic factors influencing these services. Results: Only 9.7% of children with CP received necessary transition services, compared to 19.7% of children with DDs and 19.0% of TDC. Older age, female sex, non-Hispanic white ethnicity, and higher household income were significant predictors of receiving transition services. Children with CP were less likely to have private time with healthcare providers and receive skills development assistance compared to other groups. Conclusions: The findings highlight disparities and critical needs for targeted interventions and structured transition programs to improve the transition from pediatric to adult healthcare for children with CP. Addressing disparities in service receipt and ensuring coordinated, continuous care are essential for improving outcomes for children with CP.

The Role of Health Information Technology During Hospital to Home Transitions.

The use of healthcare information technology (HIT) is vital for storing and exchanging health information during patient transitions, playing a significant role in care coordination for sepsis survivors. The critical role of HIT was evident during the pre-implementation phase of a study to implement an evidence-based protocol supporting the timely transition of sepsis survivors to home health and outpatient care. Through 61 semi-structured interviews involving 91 stakeholders, over half of the 33 identified themes were related to HIT. Notably, electronic health record (EHR) alert systems led to over-capture and alarm fatigue. Efficient information transfer during HHC referral highlighted the need for improved EHR access. The study underscores HIT's importance and potential while emphasizing the need for collaborative policy and interface development to promote effective transitions in care.

Quality of life from childhood to adulthood: Perspectives from adult patients with pediatric-onset intestinal failure.

Adult patients with pediatric onset short bowel syndrome (SBS) or intestinal failure (IF) have been described as a distinct population warranting further research. The aim of this exploratory study aimed was to offer initial insights into this population's navigation of childhood, adolescence, and transition into adulthood. Both quantitative and qualitative data were collected from a convenience sample of adults with pediatric-onset SBS/IF using a disease-specific pilot survey; 14 questionnaires were completed. Responses indicated childhood and adulthood were complex and marked by joys and trials, while adolescence was experienced by many as a particularly challenging time. As adults, numerous patients experienced barriers to accessing the medical care they desired and described difficulties finding experienced and knowledgeable providers who listened and offered individualized care. This study highlights the importance of further studying this unique patient population, suggesting it can offer critical insights to inform the development of interventions and transition programs.

Transitioning from the Emergency Department to a General Internist Outpatient Clinic for Paracentesis: A Qualitative Inquiry.

BACKGROUND: Repeated paracentesis for ascites can place significant demands on the emergency department (ED). A new general internist-led outpatient procedure clinic to alleviate this demand required ED staff and patients to accept this transition of care. AIM: This qualitative study evaluates barriers and facilitators to implementing the FLuid ASPiration (FLASP) clinic in a safety net hospital. METHODS: The FLASP clinic opened during the COVID-19 pandemic in March 2021. From February to April 2022, semi-structured interviews were conducted with: 10 ED physicians and nurses; 5 FLASP clinic patients; and 4 patients receiving paracentesis in the ED. Interviews were recorded, transcribed, and analyzed using a Grounded Theory approach for themes categorized by Theory of Planned Behavior (TPB) domains including: attitudes/knowledge; social norms; and logistics. RESULTS: Thematic analysis found that ED staff appreciated reduced demand for paracentesis, but barriers included: lack of knowledge; concerns about unstable patients and patient expectations (norms); and scheduling logistics. FLASP clinic patients had only favorable themes: belief in clinic safety; positive relationship with staff; and clinic efficiency. Patients using the ED for paracentesis expressed only concerns: possible need for testing or hospitalization; care usually in the ED; and unclear clinic scheduling. CONCLUSION: This study reveals challenges to transitioning sites of care for paracentesis including the need for greater ED staff education and standardizing methods to triage patients to appropriate site of care. Greater support and education of ED patients about the benefits of an outpatient procedure clinic may also reduce ED burden for paracentesis.

"Being the main character but not always involved in one's own care transition" - a qualitative descriptive study of older adults' experiences of being discharged from in-patient care to home.

BACKGROUND: The growing number of older adults with chronic diseases challenges already strained healthcare systems. Fragmented systems make transitions between healthcare settings demanding, posing risks during transitions from in-patient care to home. Despite efforts to make healthcare person-centered during care transitions, previous research indicates that these ambitions are not yet achieved. Therefore, there is a need to examine whether recent initiatives have positively influenced older adults' experiences of transitions from in-patient care to home. This study aimed to describe older adults' experiences of being discharged from in-patient care to home. METHODS: This study had a qualitative descriptive design. Individual interviews were conducted in January-June 2022 with 17 older Swedish adults with chronic diseases and needing coordinated care transitions from in-patient care to home. Data were analyzed using inductive qualitative content analysis. RESULTS: The findings indicate that despite being the supposed main character, the older adult is not always involved in the planning and decision-making of their own care transition, often having poor insight and involvement in, and impact on, these aspects. This leads to an experience of mismatch between actual needs and the expectations of planned support after discharge. CONCLUSIONS: The study reveals a notable disparity between the assumed central role of older adults in care transitions and their insight and involvement in planning and decision-making.

Barriers and facilitators to transition from pediatric to adult healthcare for immigrant youth with chronic health conditions.

PURPOSE: The objective of this study was to investigate the experience of first- and second- generation immigrant youth living with chronic health conditions in Canada, their parents or caregivers, and healthcare and service providers who care for immigrant youth, regarding the transition from pediatric to adult healthcare. DESIGN AND METHODS: We conducted semi-structured individual interviews and focus groups. Youth were 1st or 2nd generation immigrants, aged 16-25, with pediatric-onset chronic health conditions. Parents or caregivers had raised youth children as described. Providers delivered healthcare or other services to immigrant populations. Thematic analysis was conducted of all transcripts. RESULTS: Twenty youth, 14 parents/caregivers and five service providers participated. Most participants described healthcare transition as very difficult to navigate. Two major themes emerged across participant narratives: 1. Barriers to transition: lack of family experience in Canada, language, discrimination, financial strain, stigma, and long wait times. Some of these barriers are specific to newcomer families, but others are generalizable to the Canadian population. 2. Facilitators of transition: youth independence, youth acting as cultural bridges within their families, and cross-sector support between healthcare, education, social work and settlement services. CONCLUSIONS: Immigrant youth and their families face a broad range of barriers to healthcare transition. The collaborative nature of cross-sector support effectively addressed some of the barriers faced by newcomer families. PRACTICE IMPLICATIONS: Clinicians should provide immigrant youth and their families with accessible information about the health condition and how to navigate the adult healthcare system prior to transition, particularly when language barriers exist.

Older adults experience of transition to the community from the emergency department: a qualitative evidence synthesis.

AIM: Older adults comprise a growing proportion of Emergency Department (ED) attendees and are vulnerable to adverse outcomes following an ED visit including ED reattendance within 30 days. Interventions to reduce older adults' risk of adverse outcomes following an ED attendance are proliferating and often focus on improving the transition from the ED to the community. To optimise the effectiveness of interventions it is important to determine how older adults experience the transition from the ED to the community. This study aims to systematically review and synthesise qualitative studies reporting older adults' experiences of transition to the community from the ED. METHODS: Six databases (Academic Search Complete, CINAHL, MEDLINE, PsycARTICLES, PsycINFO, and Social Science Full Text) were searched in March 2022 and 2023. A seven-step approach to meta-ethnography, as described by Noblit and Hare, was used to synthesise findings across included studies. The methodological quality of the included studies was appraised using the 10-item Critical Appraisal Skills Programme (CASP) checklist for qualitative research. A study protocol was registered on PROSPERO (Registration: CRD42022287990). FINDINGS: Ten studies were included, and synthesis led to the development of five themes. Unresolved symptoms reported by older adults on discharge impact their ability to manage at home (theme 1). Limited community services and unresolved symptoms drive early ED reattendance for some older adults (theme 2). Although older adults value practical support and assistance transporting home from the ED this is infrequently provided (theme 3). Accessible health information and interactions are important for understanding and self-managing health conditions on discharge from the ED (theme 4). Fragmented Care between ED and community is common, stressful and impacts on older adult's ability to manage health conditions (theme 5). A line of argument synthesis integrated these themes into one overarching concept; after an ED visit older adults often struggle to manage changed, complex, health and care needs at home, in the absence of comprehensive support and guidance. DISCUSSION/ CONCLUSION: Key areas for consideration in future service and intervention development are identified in this study; ED healthcare providers should adapt their communication to the needs of older adults, provide accessible information and explicitly address expectations about symptom resolution during discharge planning. Concurrently, community health services need to be responsive to older adults' changed health and care needs after an ED visit to achieve care integration. Those developing transitional care interventions should consider older adults needs for integration of care, symptom management, clear communication and information from providers and desire to return to daily life.

A Quality Improvement Initiative to Improve Health Care Transition Planning at Adolescent Well Visits.

OBJECTIVE: Health care transition (HCT) planning supports adolescents as they move from pediatric to adult health care and is recommended for all youth. HCT planning uptake remains low, with little known about HCT in the adolescent well child check (WCC) setting. We sought to increase rates of HCT planning at WCCs by adapting best practices for HCT from specialty and chronic care. METHODS: This quality improvement initiative at 12 to 17-year-old WCCs at four Internal Medicine-Pediatrics primary care clinics, was based on the first three of the "Six Core Elements" of HCT framework and integrated into the electronic health record. Two uptake measures were assessed via chart review after three plan-do-study-act (PDSA) cycles, with two provider surveys and an implementation science analysis further informing interpretation. RESULTS: By the final PDSA cycle, the percentage of 14 to 17-year-old WCCs at which HCT planning was discussed and a screening tool completed increased from 5% to 31%, and the percentage of 12 to 13-year-old WCCs at which the HCT policy was discussed increased from 6% to 47%. Provider survey results revealed endorsement of HCT goals, but time and technological barriers, which were further elucidated in the implementation science analysis. CONCLUSIONS: This quality improvement initiative increased rates of HCT planning during adolescent WCCs. While limited to three Core Elements and Internal Medicine-Pediatrics clinics, strengths include measures capturing all WCCs, contextualized by provider surveys and an implementation science framework. Lessons from this effort can inform future tailored HCT initiatives at adolescent WCCs.

[Discharge management strategies in German general hospitals : A nationwide survey of professionals responsible for clinical risk management]. / Strategien des Entlassmanagements in deutschen Allgemeinkrankenhäusern : Deutschlandweite Befragung von Verantwortlichen des klinischen Risikomanagements.

BACKGROUND: Transitions from inpatient care are associated with risks for the safety of patients. In 2017, the framework agreement on discharge management was legally defined. There is currently a lack of empirical data in Germany on the implementation of measures to ensure safe transitions of patients after inpatient care. The aim of this study is to provide an overview of the discharge management strategies implemented by German general hospitals. METHODS: Between March and May 2022, specific discharge management strategies as well as structural and organizational characteristics were assessed in a nationwide survey of 401 general hospitals, and descriptive statistics and group comparisons were performed. RESULTS: Seven of nine strategies surveyed were implemented in > 95% of all hospitals. The evaluation of discharge planning was only implemented in 61% of the hospitals, and systematic documentation, analysis, and evaluation of readmissions in 54%. Hospitals with a higher number of hospital beds reported significantly less often about "early contact with follow-up care providers" and "organization of a seamless transition to follow-up care." DISCUSSION: A large part of the strategies in discharge management from inpatient treatment is implemented in German general hospitals. However, measures for evaluation and the systematic analysis of discharge processes and readmissions of patients have only been partially implemented. However, these are necessary to systematically evaluate and potentially improve the discharge processes.

"I want to stay here": Patient and staff perspectives on transitioning from a low-threshold buprenorphine program to clinic-based care.

BACKGROUND: The Project Connections At Re-Entry (PCARE) Van is a low-threshold buprenorphine program operating outside the Baltimore City Detention Center. Like other low-threshold programs, PCARE seeks to engage a vulnerable population in care, stabilize patients, then transition patients to longer-term care; however, <10% of patients transition to clinic-based buprenorphine treatment. Our goal was to better understand these low transition rates and center patient perspectives in discussion of broader low-threshold program design. METHODS: From December 2022 to June 2023, semi-structured interviews were conducted with 20 former and current PCARE patients and 6 staff members. We used deductive and inductive coding followed by thematic content analysis to identify themes around treatment experiences and care preferences. RESULTS: There were strong preferences among current and former patients for continuing buprenorphine treatment at the PCARE Van. Several themes emerged from the data that explained patient preferences, including both advantages to continuing care at the van (preference for continuity, feeling respected by the program's structure and philosophy) and disadvantages to transitioning to a clinic (perceived harms associated with rigid or punitive care models). Staff noted limited program capacity, and patients expressed that if needed, they would transition to a clinic for altruistic reasons. Staff expressed varied perspectives on low-threshold care, emphasizing both larger systems factors, as well as beliefs about individual patient responsibility. CONCLUSIONS: While many low-threshold care settings are designed as transitional bridge models, this research highlights patient preference for long-term care at low-threshold programs and supports efforts to adapt low-threshold models to be sustainable as longitudinal care.

Psychological separation, health locus of control, and transition readiness in adolescents and young adults with type I diabetes.

PURPOSE: The purpose of this study was to examine the effects of psychological separation and health locus of control on the health care transition readiness of adolescents and young adults (AYAs) with type 1 diabetes. METHODS: Data were collected between December 2020 and October 2021. One hundred twelve AYAs with type 1 diabetes treated at a tertiary hospital and under follow-up observation as well as AYAs with type 1 diabetes nationwide who were part of the type 1 diabetes internet community were enrolled. The Psychological Separation Inventory, the Multidimensional Health Locus of Control scale from C, and the Self-management and Transition to Adulthood with Therapeutics = Rx Questionnaire were used. RESULTS: Multiple regression analysis indicated that age (ß = 0.302, p = .001), hemoglobin A1c (HbA1c) (ß = -0.174, p = .040), conflictual separation (ß = 0.242, p = .005), functional separation (ß = 0.200, p = .045) and attitudinal separation (ß = -0.240 p = .015) were significantly associated with health management transition readiness; these predictors explained 27.6% of health care transition readiness (F = 8.062, p = .000). CONCLUSIONS: AYAs with type 1 diabetes can enhance readiness for health care transition by fostering psychological separation from parents, effectively managing blood glucose levels, and taking into account age-related factors during the preparation process. At this point, it is essential for healthcare professionals to guide parents in recognizing adolescents' psychological independence and facilitating their supportive role through the process of redefining their roles. PRACTICE IMPLICATIONS: Health care providers should promote psychological separation in AYAs. Additionally, taking into account the developmental characteristics of adolescence can facilitate a successful health care transition.

Transgender Youth Readiness for Health Care Transition: A Survey of Youth, Parents, and Providers.

Purpose: The purpose of this study was to identify health care transition (HCT) readiness and skills among transgender youth transitioning gender-affirming care from pediatric to adult providers. Methods: A convenience sample of youth, 14-21 years old, their parents, and health care providers recruited from a multidisciplinary transgender youth clinic in 2019 completed a modified version of the Got Transition readiness assessment with elements specific to gender-affirming care. Youth assessed their own readiness, parents assessed their child's readiness, and providers assessed their transgender patients' readiness overall. Results: Twenty-nine youth (mean age 17.0 years), 26 parents, and 5 health care providers participated. Ratings of the overall importance of preparing for HCT were similar across all participant groups, and there were few disagreements on the importance of individual skills included in the readiness assessment. Ratings of overall HCT readiness were similar for youth regardless of age, while parents of younger youth (<18 years old) reported lower readiness than did parents of older youth. Youth rated their own competence in several skills higher compared with parents or providers, including knowledge of hormone therapy side effects. All groups of participants reported that youth most frequently needed assistance with scheduling appointments and keeping records of health information. Conclusions: Survey of youth, parents, and providers suggests that youth and parents require additional support to navigate the HCT process, highlighting the importance of ongoing skills assessment and planning.