BACKGROUND: The Westmead Centre for Adolescent and Young Adult Health is a purpose-built facility supporting integrated care for young patients with a variety of long-term health conditions transitioning from paediatric services at the Children\'s Hospital at Westmead to adult services at Westmead Hospital, Australia.
METHODS: This protocol outlines a prospective, within-subjects, repeated-measures longitudinal cohort study to measure self-reported experiences and outcomes of patients (12-25 years) and carers accessing transition care at the Centre for Adolescent and Young Adult Health. Longitudinal self-report data will be collected using Research Electronic Data Capture surveys at the date of service entry (recruitment baseline), with follow-ups occurring at 6 months, 12 months, 18 months and after transfer to adult services. Surveys include validated demographic, general health and psychosocial questionnaires. Participant survey responses will be linked to routinely recorded data from hospital medical records. Hospital medical records data will be extracted for the 12 months prior to service entry up to 18 months post service entry. All young people accessing services at the Centre for Adolescent and Young Adult Health that meet inclusion criteria will be invited to join the study with research processes to be embedded into routine practices at the site. We expect a sample of approximately 225 patients with a minimum sample of 65 paired responses required to examine pre-post changes in patient distress. Data analysis will include standard descriptive statistics and paired-sample tests. Regression models and Kaplan-Meier method for time-to-event outcomes will be used to analyse data once sample size and test requirements are satisfied.
BACKGROUND: The study has ethics approval through the Sydney Children\'s Hospitals Network Human Research Ethics Committee (2021/ETH11125) and site-specific approvals from the Western Sydney Local Health District (2021/STE03184) and the Sydney Children\'s Hospitals Network (2039/STE00977). Patients under the age of 18 will require parental/carer consent to participate in the study. Patients over 18 years can provide informed consent for their participation in the research. Dissemination of research will occur through publication of peer-reviewed journal reports and conference presentations using aggregated data that precludes the identification of individuals. Through this work, we hope to develop a digital common that can be shared with other researchers and clinicians wanting to develop a standardised and shared approach to the measurement of patient outcomes and experiences in transition care.

The transition from pediatric to adult care is challenging for patients and families with spina bifida (SB). Lifelong care relationships yield to new care environments that are typically larger, less personal, and less engaged with the nuances of SB care. Adolescence and young adulthood are often characterized by personal and psychological stresses due to factors independent of illness or chronic medical complexity. Surveys have demonstrated that transition is associated with uncertainty, anxiety, and elevated risk of adverse events for many SB patients. To help mitigate this, the authors developed a trial mentorship program between teen patients with SB and undergraduate/medical students. This study analyzes and presents the initial outcomes from this program.
The authors created the Join, Unite, Motivate, and Prepare (JUMP) program to improve readiness for the transition process. The mentee target population was patients aged 13-19 years receiving care at the authors\' SB clinic. Mentors were screened/approved undergraduate/medical students who volunteered to participate and successfully completed online training in mentorship. Upon enrollment, each patient set a combination of clinical, self, and parent/guardian goals using the individualized transition plan. These goals were shared with the mentor, mentee, parent/guardian, and physician. To monitor success, the SB program director routinely met with each mentor to discuss progress made and areas of growth. These included continuous quantitative and qualitative goal setting and failures that needed to be addressed for each agenda.
Thirteen mentor-mentee matches were created over 9 months. Of the 13 matches, 6 had more than 5 communications after the initial meeting, and 1 mentor-mentee match is still in contact today. Noted success in the program has been through mentees gaining employment, applying for scholarships, starting college, and connecting with others who are going through similar circumstances. Challenges have arisen through failure to follow-up after the initial office visit, risk with using the virtual platform, and wide geographic dispersion of both mentors and mentees across the authors\' state.
Transition from pediatric to adult care for adolescents with SB has proven to be a large hurdle. Easing this process through well-thought-out, interactive processes has the potential to improve readiness, increase patient autonomy, and provide exposure to the adult healthcare community. However, the mentorship model, in the SB setting, has not proven to be the remedy.

BACKGROUND: The introduction of highly active antiretroviral therapy has significantly improved the life expectancies of children and adolescents living with HIV, leading to an increased number transitioning to adult care. However, there has been a lack of studies in Ethiopia focusing on factors influencing the success of this transition. Therefore, this study aimed to determine predictors of a successful transition from pediatric to adult HIV clinics among adolescents and young adults living with HIV in health facilities in southern Ethiopia.
METHODS: A retrospective cohort study included 337 adolescents and young adults who transitioned to adult-oriented HIV care. Successful transition was defined as having a viral load of less than 1000 copies/ml and maintaining care during the first year post-transition. Patients\' antiretroviral therapy (ART) cards and monitoring charts were reviewed. Secondary data analysis was conducted using a multivariable binary logistic regression model to identify predictors of a successful transition. Using the variance inflation factor, we checked for multi-collinearity between variables and assessed model fitness with the Hosmer and Lemeshow goodness-of-fit test. Adjusted Odds Ratio (AOR) with 95% confidence intervals (CI) and P-value ≤ 0.05 measured the strength of association and statistical significance.
RESULTS: Of 337 participants, 230 (68.25%) successfully transitioned (95% CI = 63.25, 73.25). Transitioning at age 18 or older (AOR = 4.25; 95% CI = 2.29, 7.87), residing in an urban area (AOR = 1.78; 95% CI = 1.04, 3.02), and being on antiretroviral therapy for more than two years (AOR = 4.25; 95% CI = 1.17, 4.94; P < 0.017) were identified as positive predictors and opportunistic infection (AOR = 0.34; 95% CI = 0.15, 0.75; P < 0.008) was identified as a negative predictor for a successful transition from pediatric to adult ART clinic.
CONCLUSIONS: This study sheds light on the challenges faced by HIV patients transitioning from pediatric to adult care, with less than 70% successfully navigating this critical phase. Factors such as age at transition, residence, duration of ART, and the presence of opportunistic infections were identified as key predictors of successful transition. The findings underscore the urgent need for tailored interventions, including standardized transition plans that address age and urban/rural disparities, to enhance transition outcomes for adolescents and young adults living with HIV in the region.

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.

BACKGROUND: Adolescence and young adulthood are vulnerable developmental periods for individuals with sickle cell disease (SCD), particularly given the impact of social inequities, challenges with transitioning to adult healthcare services, and increased risk for morbidity and mortality. Systems of power, such as institutionalized and interpersonal manifestations of bias, could impact SCD transfer and engagement in adult care through their influence on healthcare transition readiness; yet research in this area is limited.
OBJECTIVE: To characterize how systems of power impact transition readiness factors described in the Social-ecological Model of AYA Readiness for Transition to Promote Health Equity (SMART-E) framework at the patient, caregiver, and practitioner levels.
METHODS: Pediatric adolescents and young adults (AYA), transferred AYA, caregivers, and practitioners participated in semi-structured focus groups and individual interviews examining health equity and systems of power during healthcare transition. Focus groups/interviews were transcribed and coded using a deductive approach via the updated SMART-E framework.
RESULTS: Ten pediatric AYA with SCD, nine transferred AYA with SCD, eight caregivers, and nine practitioners participated in a focus group or interview. Qualitative findings across reporters emphasize the impact of systems of power (e.g., racial bias and disease stigma) on knowledge, skills and self-efficacy, beliefs and expectations, goals and motivation, and emotions and psychosocial functioning at the patient, caregiver, and practitioner levels.
CONCLUSIONS: Systems of power are prevalent with respect to transition barriers for AYA with SCD and their supports. Structural, institutional, and individual factors with potential to reduce the influence of systems of power should be further identified and targeted for intervention.

OBJECTIVE: Currently, nearly 90% of patients with congenital heart disease (CHD) reach adulthood in relatively good health. Structured transition programs have emerged to support adolescents and young adults in transitioning to adult care structures, improve their autonomy, and limit healthcare ruptures. The TRANSITION-CHD randomized controlled trial aimed to assess the impact of a transition program on health-related quality of life (HRQoL) in adolescents and young adults with CHD.
METHODS: From January 2017 to February 2020, 200 subjects with a CHD, aged 13-25 years, were enrolled in a prospective, controlled, multicenter study and randomized in two balanced groups (transition program vs. standard of care). The primary outcome was the change in PedsQL self-reported HRQoL score between baseline and 12-month follow-up, using an intention-to-treat analysis. The secondary outcomes were the change in disease knowledge, physical health (cardiopulmonary fitness, physical activity), and mental health (anxiety, depression).
RESULTS: The change in HRQoL differed significantly between the transition group and the control group (mean difference = 3.03, 95% confidence interval (CI) = [0.08; 5.98]; p = .044; effect size = 0.30), in favor of the intervention group. A significant increase was also observed in the self-reported psychosocial HRQoL (mean difference = 3.33, 95% CI = [0.01; 6.64]; p = .049; effect size = 0.29), in the proxy-reported physical HRQoL (mean difference = 9.18, 95% CI = [1.86; 16.51]; p = .015; effect size = 0.53), and in disease knowledge (mean difference = 3.13, 95% CI = [1.54; 4.72]; p < .001; effect size = 0.64).
CONCLUSIONS: The TRANSITION-CHD program improved HRQoL and disease knowledge in adolescents and young adults with CHD, supporting the generalization and systematization of similar preventive interventions in pediatric and congenital cardiology.

OBJECTIVE: Transition into adulthood and adult medical care is an important step in the life of young people with epilepsy. We aimed to gain a better insight into the lived experience of the transition to adulthood and adult medical care in epilepsy in Sweden, to improve future transitional care.
METHODS: A cross-sectional observational study with digital focus-group meetings and interviews with young people with epilepsy (16-22 years, n = 37) prior to, or after the transfer to adult care, or their primary caregivers if they had intellectual disability. We used reflexive thematic analysis to analyse the experiences and expectations on the transition to adulthood and adult medical care.
RESULTS: The results of the thematic analysis included four key areas during transition to adulthood and adult care for young persons with epilepsy: (I) worries on coming changes and future, (II) transfers are not smooth and adult care is less integrated, (III) epilepsy is part of a bigger picture, and (IV) parental roles change. In those with intellectual disability, parents experienced a stressful process and had to increase their efforts to coordinate all care contacts in adult care. Here, epilepsy was often experienced as a minor part of a more complex disease picture, where neurodevelopmental issues were often the primary concern.
CONCLUSIONS: Transition in epilepsy is often complex due to the large burden of co-occurring disease, specifically intellectual disability and neuropsychiatric diagnoses. Transfer to adult care is experienced as unplanned and participants experience uncertainty, indicating a need for an improved transition process. As effective interventions are known in other chronic diseases, future studies should focus on the evaluation of how these approaches can be feasible and effective in young people with epilepsy.

OBJECTIVE: To explore the mental health experiences of adolescents and young adults (AYA) with inflammatory bowel disease (IBD) enrolled in a randomized controlled trial evaluating the impact of a multimodal transition intervention.
METHODS: Virtual semistructured interviews were held with 21 AYA aged 16 through 18 years with IBD. Guided by qualitative description, interviews were digitally recorded, transcribed verbatim, and analyzed using an inductive approach to reflexive thematic analysis.
RESULTS: Three themes were generated from the data: (1) a continuum of integration between IBD and personal identity in adolescence and young adulthood; (2) manifestations of the mind-gut connection among AYA with IBD; and (3) hopes and priorities for addressing mental health in IBD care.
CONCLUSIONS: AYA with IBD endorsed the criticality of incorporating mental health discussions into routine care during the transition to adult care, given the co-occurrence of psychosocial stressors throughout this period. A series of factors promoting and hindering the integration of IBD into one\'s identity were identified and could be explored in clinical encounters.

OBJECTIVE: To study changes in health-related quality of life (HRQoL) in adolescents and young adults (AYAs) with chronic medical conditions across the transfer to adult healthcare and associations of HRQoL with transition readiness and experience of care.
METHODS: Participants in this international (Finland, Australia) prospective cohort study were recruited in the year prior to transfer to adult health services and studied 12 months later. In addition to two HRQoL scales (Pediatric Quality of Life inventory (PedsQL), 16D), the Am I ON TRAC for Adult Care Questionnaire and Adolescent Friendly Hospital Survey measured transition readiness and experience of care and categorised by quartile. Data were compared before and after transfer to adult healthcare.
RESULTS: In total, 512 AYAs completed the first survey (0-12 months before transfer of care) and 336 AYAs completed it 1 year later (retention rate 66%, mean ages 17.8 and 18.9 years, respectively). Mean total PedsQL scores (76.5 vs 78.3) showed no significant change, although the social and educational subdomains improved after transfer of care. The mean single-index 16D score remained the same, but in Finland, distress increased and the ability to interact with friends decreased after transfer. AYAs within the best quartiles of experience of care and transition readiness had better HRQoL than AYAs within the worst quartiles.
CONCLUSIONS: Overall HRQoL of AYAs remained unchanged across the transfer to adult healthcare. Recognising and supporting AYAs with unsatisfactory experience of care and poor transition readiness could improve overall HRQoL during the transition process.
BACKGROUND: NCT04631965.

OBJECTIVE: Patients with anorectal malformation (ARM) and Hirschsprung\'s disease (HD) live with long-term impact of these diseases even into adulthood. We aimed to explore the physical, social and emotional impact of these diseases in adolescents and young adults to develop best practices for transition care.
METHODS: We conducted one-on-one in-depth interviews with ARM and HD patients aged  ≥ 11 years who had undergone surgery at four tertiary referral centers. All interviews were audio-recorded and transcribed verbatim. We analyzed transcripts for recurring themes, and data were collected until data saturation was reached. Three researchers independently coded the transcripts for major themes using thematic analysis approach.
RESULTS: We interviewed 16 participants (11 males) between October 2022 and April 2023. Ages ranged from 11 to 26 years. Five major themes emerged: (1) personal impact (subthemes: physical, emotional and mental health, social, school), (2) impact on family, (3) perceptions of their future (subthemes: relationships, career, state of health), (4) sources of support (subthemes: family, peers, partner), and (5) transition care (subthemes: concerns, expectations). Only females expressed concerns regarding future fertility.
CONCLUSIONS: This study highlights the evolving problems faced by adolescents and young adults with ARM and HD, especially gender-specific concerns. Our findings can inform efforts to provide individualized care.