Health Care Transition Process Research Articles

Transitioning from Pediatric- to Adult-focused Dialysis Care: A Systematic Review with Recommendations

Background: There is limited data evaluating the practices of nephrologists who prepare dialysis-dependent adolescents and young adults (AYA) for healthcare transition (HCT) from pediatric- to adult-focused healthcare. The aims of this manuscript are to 1) critically evaluate the current evidence and experiences surrounding HCT from pediatric- to adult-focused dialysis units and 2) make recommendations that can be implemented for this process. Methods: We searched PubMed, EMBASE, CINAHL, COCHRANE, and clinicaltrials.gov to identify studies that pertain to the HCT of AYA patients from pediatric- to adult-focused dialysis care. Results: A total of 14 studies were included and were grouped into subcategories to facilitate data synthesis: HCT process, preparedness of patient and family, preparedness of adult-focused nephrology providers, barriers to HCT, and quality of life. These included studies highlight the importance of creating an HCT process with a formal policy. They focus on the importance of patient and family preparedness and on measuring HCT readiness using standardized scales. They also underline the importance of identifying adult-focused nephrology ‘HCT champions’ to care for AYA requiring dialysis. Lastly, they emphasize the importance of measuring the quality of life in AYA patients to ensure optimal patient-centered HCT. Conclusion: There is limited data on HCT for AYA with ESKD. Upon review and analysis of current literature, we recommend: creating a formal, written HCT policy; setting achievable goals for health self-management and conducting regular assessments of HCT readiness; identifying a lead or ‘champion’ at an accepting adult-focused dialysis unit and ensuring good communication between pediatric and adult providers; and completing annual quality-of-life assessments.

Implementing a Structured Health Care Transition (HCT) Process for Sickle Cell Disease Using Quality Improvement: Results from the Sickle Cell Trevor Thompson Transition Project HCT Learning Collaborative

Ensuring consistent healthcare during transition is challenging for sickle cell disease (SCD). Emerging adults with SCD (EASCD) experience triple the mortality rates and double the acute care utilization rates compared to younger and older ages. The transition period is also plagued by reduced quality of life (QOL) with increased missed school days per year and worse standardized test scores. The Sickle Cell Trevor Thompson Transition (ST3P-UP) study aimed to improve acute care utilization and QOL for EASCD by standardizing the transition process while engaging the community as an equal partner. A prior regional stakeholder needs assessment identified care standardization, establishing individual emergency care plans (ECPs), and community engagement as critical success factors for improved access to and engagement in care during transition. The ST3P-UP SCD health hare transition (HCT) learning collaborative engaged 14 pediatric and adult paired sites that included a partner community-based organization (CBO) using the concept of a site “Triad” as the critical framework of each sites transition team. The collaborative aim statement established at a kickoff meeting was “ to improve the health of EASCD by implementing an education-based transition program in pediatric and adult SCD clinics to be accomplished by 24 months, using the Model for Improvement and the Got Transition Six Core Elements of Transition (6CE) model. ” Using the 6CE framework established by Got Transition® and the Model for Improvement QI methodology, we established a SCD HCT Process Measurement Tool (PMT) and 2 outcome measures for the transition learning collaborative namely: transition readiness assessment (RA), and an individualized emergency care plan (ECP). Monthly virtual meetings provided coaching on HCT recommendations, use of Plan-Do-Study-Act cycles, and practical guidance on implementing the 6CE. Sites were given a change package that included provider and patient education materials, resources to establish and strengthen a QI team, transition billing and coding resources etc.) to improve their transition processes. Implementation of 6CE was measured across 14 clinical sites, each comprised of both pediatric and adult clinics, who cared for 1625 EASCD aged 16-25. Clinical programs varied: 12 urban, 2 rural; 12 academic, 2 non-academic; 6 small, 8 large. The HCT-PMT assessed 6CE implementation adherence using iterative QI strategies at baseline (2018) and every six months thereafter for 54mo (2022). Pre-post results were compared for the overall group and by practice size. All 14 sites made substantial progress towards implementing a structured HCT process within 24 months. Overall HCT-PMT scores improved by 402% by the end of the 54mo collaborative (19.4 ± 14.1 to 97.4 ± 5.2). PMT scores improved significantly by 312% (24 to 99) for pediatrics and 539% (15 to 96 for adult sites. Pediatric PMT scores were higher at each assessment interval vs. adult scores, however adult sites achieved a higher degree of improvement. Smaller sites achieved a higher degree of improvement vs. large sites. Large site PMT scores improved 362% (21 to 97); small site PMT scores improved 444% (18 to 98). Additionally, sites demonstrated substantial improvements with having current ECPs for EASCD annually (completed and reviewed within the past year). At baseline, only 20% of pediatric and 3% of adult EASCD had a current ECP; only 38% of pediatric and 20% of adult EASCD had a current RA. Run charts demonstrated significant improvement with implementing the ECP measure. Pediatric sites had significant and sustained improvement in adherence to the ECP measure for >6mo. Adult sites started with a lower baseline score. Although they met their goal of showing process capability, they have not yet demonstrated sustained improvement. By Dec. 2022, site adherence with current ECP improved to 84% and 70% for pediatric and adult sites respectively. Adherence with current RA also improved to 76% and 70% for pediatric and adult sites respectively. All 14 sites showed significant improvement with implementing a structured HCT process aligned with the 6CE using QI confirming its feasibility in establishing a standardized and measurable transition process that can be applied to various chronic conditions.

Outcomes of a Structured Ambulatory Care Health Care Transition Approach in a Large Children's Hospital

PurposeWithout a structured health-care transition (HCT) process, youths with chronic conditions face increased morbidity, care gaps, and dissatisfaction. This article documents the process and outcomes of implementing a standardized approach in a large children's hospital. MethodsChildren's Mercy Kansas City adopted Got Transition's Six Core Elements of Health Care Transition and established a system-wide implementation plan, between 2015 and 2019, involving leadership buy-in, consumer engagement, infrastructure improvements, and quality improvement efforts. Outcomes measured included the number of youths aged 12–21 years receiving transition readiness assessments and participating in goal setting, receiving counseling, and receiving a transfer order, if appropriate. Also, Division-specific process outcome surveys were conducted annually using Got Transition's Current Assessment of HCT Activities. ResultsA total of 8,099 unique patients received a structured HCT intervention using the Six Core Element approach over the 5-year period. From 2015 to 2019 the average annual growth was: 207% for completion of transition readiness and goals assessments, 243% for charting of HCT discussions, and 105% for transfer orders. In 2015, 3/20 (15%) divisions were implementing this HCT intervention; in 2019, 17/20 (85%) divisions were implementing it, representing a 467% growth. Division participation in measuring HCT implementation also increased by 89% from 9/20 in 2016 to 17/20 in 2019. The average Current Assessment of HCT Activities scores increased by 35% from 14.55/32 to 19.67/32 during that time. DiscussionThis hospital-wide program demonstrates that a standardized HCT process can be successfully implemented in a diverse group of outpatient pediatric primary and subspecialty care settings.

Barriers to a successful healthcare transition for individuals with urea cycle disorders.

The pediatric to adult healthcare transition (HCT) is a process for individuals with chronic health conditions to gradually shift from a pediatric to an adult-oriented care system. Autonomy and self-management skills required for an individual's HCT readiness can be evaluated through the transition readiness assessment questionnaire (TRAQ). Despite general HCT preparation guidelines, little is known about the HCT experience of individuals with a urea cycle disorder (UCD). This is the first study to report the parent or guardian perception of the HCT process in children with a UCD by investigating the stages of transition readiness and transition outcome. We identify barriers to HCT readiness and planning, along with deficiencies in transition outcome for individuals with a UCD. For children that received special education services compared to those that did not, significantly lower transition readiness scores were identified in the total TRAQ score (p=0.03) and in the domains of tracking health issues (p=0.02), talking with providers (p=0.03), and managing daily activities (p=0.01). There was a lack of HCT preparation as most subjects did not have a HCT discussion with their healthcare provider before age 26. Deficiencies in HCT outcome are demonstrated by individuals with a UCD reporting delays in needed medical care and dissatisfaction with their healthcare services. Considerations for facilitating a successful HCT for individuals with a UCD include providing individualized education, appointing a transition coordinator, allowing flexibility in HCT timing, and ensuring that the individual recognizes concerning UCD symptoms and knows when to seek medical care.

Indicators of Healthcare Transition Progress Among College Youth With Type 1 Diabetes.

Adolescents with chronic diseases must navigate changing healthcare needs in college and beyond. This study examined the ability of college youth with type 1 diabetes (T1D) to achieve transition milestones and ascertained sociodemographic predictors of a successful healthcare transition (HCT). College youth with T1D were recruited via social media and direct outreach to participate in a web-based study, during which they answered questions about the HCT process. Descriptive statistics and multivariable regression were used to evaluate HCT measures as a function of sociodemographic variables. Nearly two-thirds of participants (N=138) had discussions with their providers about changing healthcare needs (65.9%) and transferring care to adult physicians (64.5%); less than one-third (27.9%) discussed obtaining health insurance as an adult. Females were more likely than males to discuss transitioning to adult providers (70.3% vs 40.7%, P < .01). Those covered on a parent's insurance (vs other) plan were more likely to receive help with finding adult providers (79.3% vs 44.4%, P=.04) but less likely to discuss how to obtain health insurance (25.0% vs 61.1%, P < .01). These differences persisted after adjustment. Improvement is needed with regard to college youth with T1D becoming autonomous managers of their own care. Gaps were found in their experiences of discussing changing healthcare needs, locating adult providers, and obtaining health insurance-especially among those who were younger, male, and not covered under parental insurance. Efforts to improve the HCT process should focus particularly on these subgroups to advance healthcare delivery in this population.

Strategies to improve outcomes of youth experiencing healthcare transition from pediatric to adult HIV care in a large U.S. city

BackgroundThe healthcare transition (HCT) from pediatric to adult HIV care can be disruptive to HIV care engagement and viral suppression for youth living with HIV (YLH).MethodsWe performed qualitative interviews with 20 YLH who experienced HCT and with 20 multidisciplinary pediatric and adult HIV clinicians to assess and rank barriers and facilitators to HCT and obtain their perspectives on strategies to improve the HCT process. We used the Exploration Preparation Implementation Sustainment Framework to guide this qualitative inquiry.ResultsThe most impactful barriers identified by YLH and clinicians focused on issues affecting the patient-clinician relationship, including building trust, and accessibility of clinicians. Both groups reported that having to leave the pediatric team was a significant barrier (ranked #1 for clinicians and #2 for YLH). The most impactful facilitator included having a social worker or case manager to navigate the HCT (listed #1 by clinicians and #2 by YLH); case managers were also identified as the individual most suited to support HCT. While YLH reported difficulty building trust with their new clinician as their #1 barrier, they also ranked the trust they ultimately built with a new clinician as their #1 facilitator. Factors reported to bridge pediatric and adult care included providing a warm handoff, medical record transfer, developing relationships between pediatric clinics and a network of youth-friendly adult clinics, and having the pediatric case manager attend the first adult appointment. Longer new patient visits, increased health communication between YLH and clinicians and sharing vetted clinician profiles with YLH were identified as innovative strategies.ConclusionIn this multi-disciplinary contextual inquiry, we have identified several determinants that may be targeted to improve HCT for YLH.

Adolescents' and Young Adults' Recommendations for Implementing Healthcare Transition in Rheumatology: A Mixed Methods Study.

The goal was to elicit adolescents' and young adults' (AYAs) perspectives about how to implement the Six Core Elements of Healthcare Transition within rheumatology care. AYAs (ages 16-28 years old) with self-reported rheumatic conditions were recruited through patient organizations and social media. In Phase One (qualitative [QUAL]), 90-minute focus groups were facilitated to elicit AYAs' reactions to Six Core Elements content. In Phase Two (quantitative; QUAN), a national survey was conducted to determine generalizability of recommendations extracted from Phase One. Mixed methods analyses were conducted by a multidisciplinary team of social science researchers, pediatric rheumatologists, and patients. Although focus group participants (n=39) were previously unfamiliar with the Six Core Elements, they reacted favorably to its format and content. Participants provided suggestions for how to logistically execute each component in the clinic. Additionally, 3 overarching recommendations emerged that focused on motivating AYAs to engage: 1) frame health care transition as an opportunity for empowerment; 2) implement a structured education plan; and 3) consider the role of parents. In line with qualitative findings, survey participants (n=137) reported that they would prefer to learn most transitional skills from and discuss developmentally specific topics with their rheumatology team. Participants reported they would likely complete programs to learn transitional skills from allied professionals, via patient portals, or in group settings. Incorporating patient perspectives into research and clinical practice is an opportunity to strengthen educational programs. AYAs emphasized the importance of gaining independence and becoming empowered through the health care transition process with structured support from their rheumatology teams.

Implementation of Rheumatology Health Care Transition Processes and Adaptations to Systems Under Stress: A Mixed-Methods Study.

Despite poor health care transition outcomes among young adults with pediatric rheumatic diseases, adoption of transition best practices is low. We sought to understand how structured transition processes were operationalized within pediatric rheumatology practices and what factors were perceived to enable adaptations during a global pandemic. We conducted a mixed methods study of team leaders' experiences during an interim analysis of a pilot project to implement transition policy discussions at sites in the Childhood Arthritis and Rheumatology Research Alliance Transition Learning Collaborative. We combined quantitative assessments of organizational readiness for change (9 sites) and semistructured interviews of team leaders (8 sites) using determinants in the Exploration, Preparation, Implementation, Sustainment Framework. Engagement of nursing and institutional improvement efforts facilitated decisions to implement transition policies. Workflows incorporating educational processes by nonphysicians were perceived to be critical for success. When the pandemic disrupted contact with nonphysicians, capacity for automation using electronic medical record (EMR)-based tools was an important facilitator, but few sites could access these tools. Sites without EMR-based tools did not progress despite reporting high organizational readiness to implement change at the clinic level. Lastly, educational processes were often superseded by acute issues, such that youth with greater medical/psychosocial complexity may not receive the intervention. We generated several considerations to guide implementation of transition processes within pediatric rheumatology from the perspectives of team leaders. Careful assessment of institutional and nursing support is advisable before conducting complex transition interventions. Ideally, new strategies would ensure interventions reach youth with high complexity.

The lived experience of adults and parents: Transitioning from paediatric to adult health care with oesophageal atresia and tracheo-oesophageal fistula.

To explore the experience of healthcare transition from paediatric to adult health care for adults born with oesophageal atresia and tracheo-oesophageal fistula (OA/TOF) and parents. OA/TOF is a rare and chronic health condition that can require lifelong medical follow-up and management. There is evidence to suggest that transitioning from paediatric to adult health care can be problematic for people with rare and chronic conditions, including OA/TOF. The previous literature suggests that the experience of transitioning with a rare condition is more complex than transitioning with a common chronic condition. The current study was a qualitative, cross-sectional, survey-based study. Data were collected through an online survey. Parents of children born with OA/TOF (n=23) and adults born with OA/TOF (n=16) were recruited through a UK-based OA/TOF patient charity. Data from six open-ended questions were analysed using a hybrid approach combining elements of inductive and deductive thematic analyses. Throughout the research process, the SRQR were followed. Five themes were constructed during the analysis, reflecting the experience of parents and adults transitioning from paediatric to adult health care: thrown into the unknown; a cultural shift; stepping back and stepping up; 'no transition as such'; and living with uncertainty. The findings suggested that a formalised, managed healthcare transition is not commonly experienced by people born with OA/TOF and parents. We recommend a formalised healthcare transition process in OA/TOF, including preparation for transition and having a named key worker to manage the multidisciplinary transition process. The results also highlighted the need for adults born with OA/TOF to have access to a specialist health service with knowledge and understanding of issues related to OA/TOF.

“It’s about making adolescents in charge of their health”: policy-makers’ perspectives on optimizing the health care transition among adolescents living with HIV in Kenya

ABSTRACT The health care transition (HCT) from pediatric to adult care is a potential contributor to poor clinical outcomes among adolescents living with HIV (ALHIV). In sub-Saharan Africa (SSA), there is limited information on effective tools and processes to prepare and support ALHIV through this transition. This study elicited perspectives of policy-makers regarding barriers and facilitators to successful HCT among ALHIV in Kenya. Twenty in-depth interviews (IDIs) were conducted with policy-makers using a semi-structured guide. Using the socio-ecological model (SEM) as an organizing framework, directed content and thematic network analyses methods were used to characterize themes related to key influences on HCT processes and to describe actionable recommendations for improved tools and resources. Policy-makers identified multilevel support, including the development of a triadic relationship between the caregiver, healthcare worker (HCW) and adolescent, as an essential strategy for improved HCT success. Across the SEM, policy-makers described the importance of actively engaging adolescents in their care to promote increased ownership and autonomy over health decisions. At the structural level, the need for more comprehensive HCT guidelines and improved HCW training was highlighted. Expanded HCT tools and guidelines, that emphasize supportive relationships and intensified adolescent engagement, may improve HCT processes and outcomes.

Provider Perspectives of Necessary Factors in Sickle Cell Disease Health Care Transition: Results from an Online Survey

Introduction: Survivorship of children with sickle cell disease (SCD) has substantially increased due to the advent of medical advances, such as sepsis prevention (prophylactic penicillin) and exposure to disease-modifying therapies (chronic transfusion and hydroxyurea). Despite greater longevity in SCD, the period surrounding the transition from pediatric to adult care has the highest prevalence of undesirable outcomes: youth aged 18-30 years are at high risk for mortality and high rates of healthcare utilization, resulting in increased healthcare costs. As such, health care transition programs have been created to prepare patients with SCD for adult-centered care and subsequently, improve health outcomes. However, few programs have been evaluated for effectiveness in achieving optimal health outcomes in SCD in part because of a lack of identifiable predictors and outcomes.Objective: To identify factors necessary for successful health care transition, as judged by pediatric and adult healthcare professionals involved with the SCD population.Method: Individuals who provide clinical care for or conduct clinical research with patients with SCD were eligible to participate in the survey and were collectively defined as providers. Providers were recruited online through nationally recognized professional societies, SCD provider contact lists and in person at a national SCD conference. Links to an online survey, administered via Qualtrics software, were distributed to potential participants. The survey included demographic questions and a list of 36 transition factors, including disease knowledge, self-management behaviors, and independent living skills. Participants were asked to rate the level of importance of each factor in helping a patient with SCD successfully transition from pediatric to adult care on a scale from 1 (not important) to 10 (very important). They were then asked to select five of the 36 factors they believed were most necessary for a successful transition, ranking them from 1 (highest) to 5 (lowest). Descriptive statistics were conducted to determine the top ratings and rankings. A two-way MANOVA was conducted to examine whether the top ratings were different according to provider gender and occupation.Results: The sample included 258 providers (74% female, 65% White). The majority were hematologists (41%); 38% were other medical staff (e.g., nurse, midlevel providers, other physicians) and 21% were non-medical staff (e.g., psychologist, social worker, researchers). The transition factor ratings (scale 1 to 10) ranged from 5.82-9.62 (M=8.05, SD=1.74). The factors with the highest ratings included: Knows how to take medications (M=9.62, SD=0.82), Explains/communicates medical needs to medical personnel (M=9.50, SD=0.93), Knows when to seek medical assistance if home management fails (M=9.32, SD=1.12), and Knows how to manage pain episodes (M=9.31, SD=1.18). These same four factors also were ranked as the top five most relevant factors: Knows how to manage pain episodes (N=138, 53%, M=2.59, SD=1.30), Explains/communicates medical needs to medical personnel (N=115, 45%, M=2.54, SD=1.38), Knows how to take medications (N=135, 52%, M=2.67, SD=1.31), Knows when to seek medical assistance if home management fails (N=102, 40%, M=2.97, SD=1.46). Knows medical history (N=100, 39%, M=2.57, SD=1.35) was the fifth most relevant factor. Multivariate results indicated a trend toward hematologists giving lower ratings compared to other medical and non-medical professionals, F (8, 486) = 1.91, p = .057.Conclusions: Our findings reveal the importance of attainment of disease knowledge and self-management skills for optimal transition from pediatric to adult care. Interventions and programming designed to prepare adolescents for transition should target these areas. Furthermore, disease knowledge and self-management skills may be meaningful predictors when evaluating transition outcomes and the effectiveness of transition programs during and after the health care transition process. Our data also indicated differences in provider ratings by profession, demonstrating the value of incorporating a variety of perspectives in assessing transitioning needs. Such efforts are essential to improve health outcomes and quality of care for patients with SCD transitioning to adult care. DisclosuresPorter:NHLBI: Research Funding.

932-P: Impact of Insurance Source on Health Care Transition Progress in College Youth with Type 1 Diabetes

Background: The transition from pediatric to adult models of care can be challenging for adolescents with chronic diseases, like type 1 diabetes (T1D). Among the challenges they often face is the issue of health insurance, which can be difficult to navigate, and which may affect access to effective transitional care. In this study, we examined the impact of insurance source on healthcare transition (HCT) progress in college youth with T1D. Methods: Data are from 138 respondents to a multi-national, web-based study of college youth with T1D recruited via social media platforms and direct outreach. Participants were asked to report their health insurance source and answer questions about the HCT process and their diabetes care team. Descriptive statistics and multivariable regression were used to evaluate HCT measures as a function of sociodemographic variables, adjusting for confounders. Results: Participants were from 85 universities across 30 states and Canada, and 87.0% were covered on a parent’s insurance plan. Those not covered on a parent’s insurance plan were more likely to list a general adult practitioner as their main diabetes care provider (22.2% vs. 8.3%, p=0.067) but were less likely to have received help with finding an adult provider than their counterparts (44.4% vs. 76.3%, p=0.042). Participants not covered on a parent’s insurance plan (vs. those who were) also were more likely to have discussed obtaining health insurance with their provider (61.1% vs. 25.0%, p=0.002). These differences persisted after adjustment. Conclusion: College youth with T1D demonstrate differences in indicators of HCT progress according to insurance source. Lack of parental insurance may instigate independent - though not necessarily smooth - transitions, potentially leaving an increasing number of adolescents with dependent coverage vulnerable to a prolonged HCT. Efforts to improve the HCT process should consider insurance source to advance HCT preparation for all college youth with T1D. Disclosure R. K. Tsevat: None. E. R. Weitzman: None. L. E. Wisk: None. Funding Boston Children’s Hospital (FP01017994)

852-P: Improving the Quality of Health Care Transitions for Young Adults at an Adult Endocrinology Clinic

Background: Young adults, transitioning from pediatric to adult endocrinology clinics, are at risk for adverse events. As these patients assume responsibility for their care, ensuring an effective process for health care transition (HCT) and integration into an adult clinic is imperative. Yet, there is a scarcity of data on implementing HCT best practice guidelines into adult endocrinology care using QI methodology. Objective: To improve the quality of HCTs for young adult patients (18-26 years of age) diagnosed with a variety of endocrinologic conditions by implementing Got Transition’s Six Core Elements of Health Care Transition 2.0 and utilizing the Integrating Young Adults into Adult Health Care toolkit. Methods: A team of pediatric and adult endocrinology clinicians, QI experts, and patient and family advisors (PFAs) was established to guide implementation of the Six Core Elements. Got Transition measurement tools (Current Assessment of Health Care Transition Activities-CAHCTA; Health Care Transition Process Measurement Tool-HCTPMT) were used to establish baseline scores and track progress on a quarterly basis. The team developed a “Welcome Packet” to orient and integrate young adults into adult endocrinology care. QI tools were used to identify current clinical processes and opportunities for system changes through Plan-Do-Study-Act (PDSA) cycles. Results: From October 2019 to July 2020, baseline scores improved on both the CAHCTA by 84.6% (Baseline: 13; Q1: 15; Q2: 23; Q3: 24) and the HCTPMT by 1,250.0% (Baseline: 2; Q1: 16; Q2: 25; Q3: 27). PFAs provided feedback about the Welcome Packet. PDSA Cycle 1 included a “pre-visit” during new patient visits to orient patients to adult endocrinology care using the Welcome Packet. PDSA Cycle 2 focused on piloting the Endocrine Society Patient Self-assessment. Conclusion: The implementation of HCT best practice guidelines using rigorous QI methodology can significantly improve young adults’ integration into adult health care. Disclosure M. P. Gilbert: Consultant; Self; Novo Nordisk. S. G. DeVoe: None. A. G. Kennedy: None. M. Ogelby: None. A. Consigli: None. P. Zimakas: None. A. B. Repp: None. K. J. Robinson: None.

Transitioning from pediatric to adult care and the HIV care continuum in Ghana: a retrospective study

BackgroundIn Sub-Saharan Africa, there are now a significant number of adolescents living with HIV (ALHIV), due to increased access to effective antiretroviral therapy. However, these adolescents are at high risk of dying during the transition to adult care due to various reasons, including lack of preparation for the transition and poor transition arrangements. More knowledge about this issue will lead to a better planned healthcare transition process and preparation for transition from pediatric care to adult care. The aim of this study was to explore the healthcare transitional experiences of ALHIV as they moved from pediatric to adult care.MethodsA descriptive exploratory qualitative study was conducted. Purposive sampling method was used to recruit adolescents between 12 and 19 years old. Saturation was realized by the 10th participant. Data were analyzed using thematic content analysis.ResultsFour main themes emerged from the interview data: the transition process, factors facilitating the transition experience, challenges and coping mechanisms of the ALHIV during transition, and suggestions for improvement based on perceptions on the current transitioning approach. A key finding of this study was the sudden preparation for transition, linked to the absence of a structured transition protocol. Even though age was the main reason for transferring the participants from the pediatric to adult clinic, participants’ age did not influence whether they attended clinic appointment on their own or accompanied by a care provider; it was dependent on the availability of their parents or caregivers. Participants’ parents and adult family caregivers were also integrated into the transition process to some extent. We also found that most of the participants had good patient-provider relationship with their health care providers in both pediatric and adult clinics.ConclusionFindings support the need to develop a structured healthcare transition policy and age-appropriate transition within the clinic environment. There is also a need for social and community support as ALHIV transition from pediatric to adult care.

Transitions: Supporting youth and young adult health and wellness

Adolescence is an important period to begin the process of transition into the adult health care system for youth with and without special health care needs. This health care transition process — moving a child to an adult health care delivery model — aims at ensuring continuity of care and positive health outcomes for young adults. It does not have to involve changing to a new provider, although sometimes that is necessary. However, for most adolescents in the United States, this process is fraught with difficulty and does not always take place in a manner that supports good health.

Examining healthcare transition experiences among youth living with HIV in Atlanta, Georgia, USA: a longitudinal qualitative study.

IntroductionVirtually all youth living with HIV in paediatric/adolescent care must eventually transition to adult‐oriented HIV care settings. To date, there is limited evidence examining the perspectives of youth living with HIV longitudinally through the healthcare transition process. The objective of our study was to examine attitudes and experiences of youth living with HIV regarding healthcare transition, including potential change in attitudes and experiences over time.MethodsWe conducted a longitudinal qualitative interview study within a large, comprehensive HIV care centre in Atlanta, Georgia, USA between August 2016 and October 2019.We interviewed 28 youth living with HIV as part of a longitudinal observational cohort study of youth undergoing healthcare transition. We conducted qualitative interviews both immediately prior to, and one year following the transition from paediatric to adult‐oriented care.ResultsSix distinct themes emerged from interviews conducted with youth living with HIV pre‐transition: (1) reluctance to transition; (2) paediatric spaces as welcoming, and adult spaces as unwelcoming; (3) varying levels of preparation for transition; and (4) expectation of autonomy in the adult clinic. Analysis of post‐transition interviews with the same youth demonstrated: (1) inconsistencies in the transition experience; (2) fear and anxiety about transition quelled by experience; (3) varying reactions to newfound autonomy and (4) communication as the most valuable facilitator of successful transition.ConclusionsThis study’s longitudinal perspective on the healthcare transition experience yields insights that can be incorporated into programming targeting this critically important population. Although our study was conducted in a USA‐based clinic with co‐located paediatric and adult care services, many of our findings are likely to have relevance in other settings as well. Interventions aiming to improve HIV care engagement through transition should seek to enhance patient–provider communication in both paediatric and adult clinics, improve preparation of patients in paediatric clinics and ease patients gradually into autonomous disease management.

Measurement of unnecessary psychiatric readmissions in the context of care transition interventions: a scoping review

ObjectiveThe objective of this study was to examine how published studies of inpatient to outpatient mental healthcare transition processes have approached measuring unnecessary psychiatric readmissions.DesignScoping review using Levac et al’s...

Health Care Transition in School-Based Health Centers: A Pilot Study.

Nationally, there are low rates of high school-age youth receiving health care transition (HCT) preparation from health care providers. This pilot study implemented and assessed the use of a structured HCT process, the Six Core Elements of HCT, in two school-based health centers (SBHCs) in Washington, DC. The pilot study examined the feasibility of incorporating the Six Core Elements into routine care and identified self-care skill gaps among students. Quality improvement methods were used to customize, implement, and measure the Six Core Elements and HCT supports. After the pilot, both SBHCs demonstrated improvement in their implementation of the structured HCT process. More than half of the pilot participants reported not knowing how to find their doctor's phone number and not knowing what a referral is. These findings indicate the need for incorporating HCT supports into SBHCs to help students build self-care skills necessary for adulthood.

Pediatric Nurse Practitioners' Perspectives on Engaging Adolescents to Shift from Pediatric to Adolescent-Focused Health Care Services.

This study examined the perspectives of pediatric nurse practitioners (PNPs) on the shift from pediatric to adolescent-focused health care services (HCS). This movement coincides with the early stages of the health care transition process. Conference attendees (N = 170) participated in a discussion on the shift from pediatric to adolescent-focused HCS. A secondary analysis was conducted. Data were analyzed for themes using content analysis. Confidentiality was found to be a foundational aspect of adolescent-focused HCS. Two additional themes described adolescent-focused HCS characteristics and the role of the PNP in providing education and empowerment for adolescents and parents throughout this process. PNPs provide critical leadership in facilitating the shift to adolescent-focused care by providing HCS designed to support confidentiality, respond to the needs of adolescents, and offer education to empower adolescents and parents on the importance of adolescent-focused care and engagement in the overall health care transition process.

The potential contribution of critical theories in healthcare transition research and practice

Background Healthcare transition has been established as a significant topic of interest in pediatric rehabilitation. Healthcare transition research has primarily focused on barriers to self-management and achievement of a productive adulthood. Healthcare transition experts have recently called for further attention to social structural factors. Theoretical approaches are, therefore, needed to account for how such factors shape the lives of youth with disabilities, particularly those who experience marginalization and social exclusion. Purpose Taking up this call, the aim of this paper is to examine the potential contributions of two critical theories to healthcare transition research and practice. Methods Review two theories – intersectionality and critical discourse analysis. Results Intersectionality highlights how multiple intersecting social locations and social structures interact with youth’s experiences, choices and health care needs. Critical discourse analysis focuses on how discourses and assumptions in healthcare transition research and practice contribute to marginalization and can be resisted and changed by youth, families, researchers, and clinicians. Conclusions The uptake of critical theories within health care transition research and practice can account for the complex interplay of social structures, power relations and youth’s experiences. Such analysis can contribute to refining assessments and developing interventions that reflect how marginalization and exclusion impact youth’s well-being. IMPLICATIONS FOR REHABILITATION While critical theories have been applied in health and rehabilitation, there has been limited uptake of these theories in healthcare transition research and practice. Critical theories can promote awareness of how youth’s experiences, choices and actions throughout the healthcare transition process are shaping and shaped by structural factors and assumptions about a productive adulthood. Applying critical theories in healthcare transition practice involves being responsive to the structural factors that may be shaping youth’s experiences, choices and opportunities. Intersectional and critical discourse analyses can surface how to reduce social exclusion and marginalization for youth transitioning to adulthood through analyses of language, power, dominant discourse and practices amenable to change.