BACKGROUND: Solid organ transplantation (SOT) offers improved long-term survival for youth with end-stage organ disease. From a neurodevelopmental, cognitive, and academic perspective, children with solid organ transplant have a number of unique risk factors. While cognitive functioning may improve post-transplantation, it is important to understand the trajectory of neurocognitive development starting in transplant candidacy to evaluate the implications of early deficits.
OBJECTIVE: The aim of this paper is to describe the neurocognitive risks and long-term implications for adolescent transplant recipients.
METHODS: This paper provides an overview of neurocognitive functioning in youth with end-stage organ dysfunction with discussion of implications for adolescent transplant recipients.
RESULTS: Post-transplant, adolescent, and young adult solid organ transplant recipients exhibit significant levels of executive dysfunction, with implications for decision-making, regimen adherence, and transition to adult transplant care.
CONCLUSIONS: Transplantation may reduce the risk for poor long-term neurocognitive effects, yet adolescent transplant recipients remain at increased risk, particularly in executive functioning, which has implications for adherence and transition to adulthood. Baseline and follow-up assessments for youth with end-stage organ disease and transplant are important for the monitoring of neurocognitive development and may be used to mitigate risk for low adherence to post-transplantation treatment regimens and reduce barriers to transitioning to adult transplant care.

BACKGROUND: Solid organ transplant recipients experience a period of unique vulnerability during adolescence, when normative developmental changes intersect with health-related variables to influence psychological health.
METHODS: This article builds on previous reviews of psychological health in solid organ transplant recipients and proposes opportunities for clinical intervention during adolescence.
RESULTS: Transplant recipients often experience neurocognitive changes, particularly with respect to executive functions, that impact health management tasks and autonomous care. Recipients should be monitored for the development of anxiety, depression, and posttraumatic stress symptoms during adolescence, which in turn can negatively impact adherence to immunosuppression. Recent research in posttraumatic growth and resiliency factors may represent a promising avenue of intervention, leveraging normative developmental processes during this time period.
CONCLUSIONS: As pediatric transplant providers, adolescence represents a developmental period for targeted interventions to foster adjustment and adherence and promote a successful transition to adult care.

The American Society of Metabolic and Bariatric Surgery (ASMBS) and the American Academy of Pediatrics (AAP) recommend bariatric surgery as a treatment option for severe obesity. Bariatric surgery results in weight loss and improves obesity-related comorbidities. After surgery, adolescents and young adults require close observation and interdisciplinary care to help optimize weight loss, minimize nutrient deficiencies, address mental or physical health complications, and ensure a smooth transition to adult care. Yet, the extant literature on adherence and transition of care in bariatric programs is limited. Using 3 case studies from 2 bariatric programs, one on retention and 2 on transition of care, this paper highlights learning opportunities for care delivery after bariatric surgery. A quality improvement framework and an embedded electronic medical health registry can improve retention rates within a bariatric program. In addition, implementing a workflow ensures standardization of care; however, a key challenge is inadequate staffing. The programs established a transition of care policy and protocol by incorporating several of the Six Core Elements, a recognized guide for ensuring a safe and appropriate transfer from pediatric to adult care. Several research gaps remain, and further work is needed to determine and standardize best practices for adolescent bariatric surgery.

OBJECTIVE: Young people (YP) with psychotic experiences (PE) have an increased risk of developing a psychiatric disorder. Therefore, knowledge on continuity of care from child and adolescent (CAMHS) to adult mental health services (AMHS) in relation to PE is important. Here, we investigated whether the self-reported trajectories of persistent PE were associated with likelihood of transition to AMHS and mental health outcomes.
METHODS: In this prospective cohort study, interviews and questionnaires were used to assess PE, mental health, and service use in 763 child and adolescent mental health service users reaching their service\'s upper age limit in 8 European countries. Trajectories of self-reported PE (3 items) from baseline to 24-month follow-up were determined using growth mixture modeling (GMM). Associations were assessed with auxiliary variables and using mixed models. Study results. At baseline, 56.7% of YP reported PE. GMM identified 5 trajectories over 24 months: medium increasing (5.2%), medium stable (11.7%), medium decreasing (6.5%), high decreasing (4.2%), and low stable (72.4%). PE trajectories were not associated with continuity of specialist care or transition to AMHS. Overall, YP with PE reported more mental health problems at baseline. Persistence of PE or an increase was associated with poorer outcomes at follow-up.
CONCLUSIONS: PE are common among CAMHS users when reaching the upper age limit of CAMHS. Persistence or an increase of PE was associated with poorer mental health outcomes, poorer prognosis, and impaired functioning, but were less discriminative for continuity of care.

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.

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.

Interdisciplinary care and pediatric to adult transitional programs have consistently shown medical and social value for individuals with complex medical conditions such as spina bifida (SB). Such interdisciplinary clinics are common in pediatrics but are rarely offered for adults. This survey-based study reports information related to transition, daily pain burden, and satisfaction with care delivery in an adult SB clinic.
A 23-question survey that was based on empirical observations from the adult SB clinic was formulated, IRB approved, and distributed to adult patients. Many respondents had previously received care at the institution\'s pediatric SB clinic and completed transition to the adult program. Responses were de-identified, categorized, stored in a secure database, and statistically analyzed using SPSS.
Of 245 patients approached, 116 (47%) surveys were completed and analyzed. Those who had a direct transition (defined as a less than 24-month gap in care) from the pediatric to the adult clinic comprised 44% (n = 51) of responders. The alternative group of 56% (n = 65) had a longer gap, disorganized or absent transition, or had pediatric care elsewhere. The study population had an average age of 36 years, had mostly received childhood care at the authors\' institution, regardless of whether they made a direct transition or had a gap in care (68%), and held the diagnosis of open myelomeningocele (78%). Overall satisfaction with the clinic experience was high (mean score 9.04 on a 10-point subjective scale). Differences regarding independence in activities of daily living based on transition status were not significant, but on multivariate analysis, those who reported independence in activities of daily living had an almost 4-fold higher odds of daily pain (p = 0.024; OR 3.86, 95% CI 1.19-12.5). The most frequently identified areas for improvement included improved access to care and pain control.
Pediatric transitional processes and interdisciplinary clinics may contribute to improved patient-perceived outcomes and satisfaction with their SB care in comprehensive settings. Further elucidation of barriers to pain control is warranted, in addition to ways in which comprehensive and longitudinal care can improve them.

The pediatric neurosurgical community has increasingly recognized the importance of healthcare transition, the process of moving a patient from a pediatric to an adult model of care. However, surveys of pediatric neurosurgeons have revealed that few institutions have formal transition programs. Here, the authors share their preliminary experience with the development of a formal transition pilot program for patients with spina bifida and/or hydrocephalus.
Patients 18 years of age or older with a diagnosis of spina bifida and/or hydrocephalus who were followed by a pediatric neurosurgeon at Connecticut Children\'s from January 2017 to December 2023 and were recommended to transition to an adult neurosurgeon were retrospectively reviewed. Patients in the informal transition program (ITP) cohort (i.e., the recommendation to transition was made before the formal transition program [FTP] was developed in early 2020) were compared with those in the FTP cohort.
Twenty-two patients met inclusion criteria with 7 (31.8%) in the ITP cohort and 15 (68.2%) in the FTP cohort. The median age at the time of the recommendation to transition was similar in both ITP and FTP cohorts (24 [IQR 20-35] years vs 25 [IQR 24-27] years, respectively). Four (57.1%) patients in the ITP cohort had a confirmed visit with an adult neurosurgeon, compared with 13 (86.7%) patients in the FTP cohort (p = 0.274). One patient in the ITP cohort with a failed transition returned to pediatric neurosurgical care, and 1 patient in the FTP cohort required a shunt revision by an adult neurosurgeon within 1 year of the recommendation to transition.
Healthcare transition is recognized as a priority within pediatric neurosurgery, but structured, formal transition programs remain underdeveloped. The authors\' preliminary experience with a pilot transition program demonstrated that patients who underwent a formal transition were more likely to successfully establish care with an adult neurosurgeon and trended toward less resource utilization.

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

Pediatric pilocytic astrocytoma (PPA) requires prolonged follow-up after initial resection. The landscape of transitional care for PPA patients is not well characterized. The authors sought to examine the clinical course and transition to adult care for these patients to better characterize opportunities for improvement in long-term care.
Pediatric patients (younger than 18 years at diagnosis) who underwent biopsy or resection for PPA between May 2000 and November 2022 at the authors\' large academic center were retrospectively reviewed. Patient demographics, tumor characteristics, recurrence, adjuvant therapies, and follow-up data were extracted from the electronic medical record via chart review. Charts of patients who were 18 years or older as of January 1, 2024, were reviewed for adult follow-up notes.
The authors identified 315 patients who underwent biopsy or resection for PPA between May 2000 and November 2022. The most common tumor location was posterior fossa (59.7%), and gross-total resection (GTR) was achieved in 187 patients (59.4%). In patients with GTR, progression/recurrence occurred less frequently (8.6% vs 41.4%, p < 0.01) compared to patients with non-GTR. Among 177 patients found to be age-eligible for transition to adult care, the authors found that 31 (17.5%) successfully transitioned. The average age at transition from pediatric to adult care was 21.7 years, and the average age at last known adult follow-up was 25.0 years. The authors found that patients who transitioned to adult care were followed longer (12.5 vs 7.0 years, p < 0.01) and were diagnosed at an older age (12.1 vs 9.6 years, p < 0.01) than their untransitioned counterparts.
The authors found that there was a low rate of successful transition from pediatric to adult care for PPA; 17.5% of age-eligible patients are now cared for by adult providers, whereas an additional 18.6% completed appropriate follow-up during childhood and did not require transition to adult care. These findings underscore opportunities for improvement in the pediatric-to-adult transition process for patients with PPA, particularly for those with non-GTR who were not followed for at least 10 years, during which the risk of disease progression is thought to be highest.