"Not dropped off a cliff": Adolescent, parent, and provider needs and goals for healthcare transition to adult gender-affirming care.

Pediatric Research and Health Care for Transgender and Gender Diverse Adolescents and Young Adults: Improving (Biopsychosocial) Health Outcomes

Examining psychosocial factors and health care transition readiness in gender-affirming care.

SPN Position Statement: Transition of Pediatric Patients Into Adult Care

A Mixed Methods Study on Healthcare Transition From Pediatric to Adult Care in Transgender and Gender-Diverse Adolescents and Young Adults

Current challenges faced by transgender and gender-diverse patients and providers in anesthesiology.

As health care continues to evolve, the need for more effective health care transition (HCT) for all youth, but particularly children with chronic conditions and special health care needs, becomes even more important. With more than 90% of adolescents with chronic medical conditions now surviving into adulthood, suboptimal transition can lead to poorer quality of life and less successful adulthood.Through a series of clinical vignettes, the challenges of HCT are presented herein and accompanied by comments that underscore how these adolescents can best be helped to transition to successful adulthood. Several methods are presented to assess the readiness of adolescents and young adults (AYA) for transition. The process of transition can be divided into 3 stages: 1) setting the stage: initiation of HCT services and transition readiness assessment, 2) moving forward: ongoing provision of HCT services, and 3) reaching the goal: transfer of care and transition to adulthood.Several valuable suggestions for incorporating the HCT process into the health care system and improving HCT programs through a quality improvement (QI) approach are outlined. Future challenges in HCT include developing more precise assessments of transition status or transition readiness, better understanding the status and specific needs of AYA with chronic health care needs, continued program evaluation and QI efforts, and more reliance on patients and families to teach us about the challenges and methods in HCT that most effectively work for them.

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 1) critically evaluate the current evidence and experiences surrounding HCT from pediatric- to adult-focused dialysis units, 2) make recommendations that can be implemented for this process. 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. A total of 14 studies were included and were grouped into subcategories to facilitate 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 upon the importance of patient and family preparedness and measuring HCT readiness using standardized scales. They underline the importance of identifying adult-focused nephrology "HCT champions" to care for AYA requiring dialysis. Lastly, they emphasize the importance of measuring quality of life in AYA patients to ensure optimal patient-centered HCT. There is limited data on HCT for AYA with end-stage kidney disease. Upon review and analysis of current literature, we emphasize the importance of key fundamental pieces: the development of a transition policy, creating formal "HCT processes" including an assessment of readiness, and transferring care to adult-focused services."

Adolescent Comfort With Sexual Orientation and Gender Identity Collection and Preferences for Electronic Health Record Documentation in the Ambulatory Setting.

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.

Healthcare transition readiness for sickle cell disease: A high- and low- income comparative analysis

Introduction One of the ‘arts’ of age-appropriate care for adolescents and young adults (AYA) with cancer is a holistic approach to delivering care, which relies on the knowledge, skills and attitudes of all healthcare professionals (HCP). Aim The paper aims to describe the five ‘Es’ enabling holistic competence. Methods Data were collected across four specialist AYA services (21 hospitals) in a multi-site case study; using semi-structured interviews with 29 AYA and 40 HCPs, focussed ethnography and observation (120 hours). Data were analysed through thematic and framework analysis. Results HCP holistic competence was enabled by the five ‘Es’: Exposure to experience continuum: dependent on the AYA case load of the care setting. More contact with AYA facilitated knowledge in needs beyond clinical treatment. Enthusiasm: vital with smaller caseloads of AYA. Interest in the speciality heightened holistic knowledge, often created through leadership. Environment: a specialist environment to meet AYA psychosocial needs increased HCPs ability to support AYA holistically. Education: occurred on three levels: raising awareness of AYA needs, in–house education, and formal training in AYA care. Ethos: core to culture of care was a whole–team approach recognising individuality, empowering, and promoting normality for AYA. Discussion and conclusion HCP holistic competence was dependent on the level of contact with AYA: a continuum from infrequent exposure to AYA, to substantial experience in specialist services. This contact level was related to the care environment (non-specialist or specialist) and together with enthusiasm for the speciality, was a key factor in the creation of a holistic, AYA-focussed ethos of care. Centralising AYA cancer services would increase the experience HCPs have of working with AYA, within age-appropriate environments of care, thus fostering an ethos of care sensitive to AYA holistic needs. Whether this impacts outcome will become evident in early 2019 when the results of BRIGHTLIGHT are released.

Moving up: Healthcare transition experiences of adolescents and young adults with cystic fibrosis

Tailoring pediatric to adult care transition from high to low-resource settings: A user-centered design approach

Adolescents and young adults (AYAs) with CKD or end-stage kidney disease (ESKD) have unique medical, dental, psychosocial, neurocognitive, and academic needs and require close interdisciplinary collaboration to optimize their care. The etiology of CKD in AYAs is diverse compared to older adults. With their continuously improved survival, AYAs must start preparation for health-care transition (HCT) from pediatric- to adult-focused health care in the pediatric setting and it must continue at the adult-focused setting, given that their brain maturation and self-management skill acquisition occur until their mid-20s. While the growth and physical maturation of most visible body parts occur before 18 years of age, the prefrontal cortex of the brain, where reasoning, impulse control, and other higher executive functions reside, matures around 25 years of age. The HCT process must be monitored using patient- and caregiver-measuring tools to guide interventions. The HCT process becomes more complex when patients and/or caregivers have a language barrier, different cultural beliefs, or lower literacy levels. In this article, we discuss the unique comorbidities of pediatric-onset CKD/ESKD, provide information for a planned HCT preparation, and suggest interdisciplinary coordination as well as cultural and literacy-appropriate activities to achieve optimal patient outcomes.

BACKGROUND The healthcare transition (HCT) from pediatric to adult care represents a pivotal juncture for chronically ill adolescents and young adults (AYAs) and parents of these transition-aged youth. During this time, AYAs are more prone to psychological distress, treatment nonadherence, and care discontinuation, which can significantly worsen their symptom burden, and inadvertently increase associated healthcare costs and utilization. Traditionally, parents possess an intimate understanding of their child’s medical history, treatment regimens, and individualized needs. Yet, the HCT experiences of parents remain markedly underexplored, despite their potential to be positioned as a critical resource for promoting successful HCTs, and mitigating transition-related adverse health outcomes (e.g., emergency visits, hospitalizations) among AYAs. METHODS This review, led by a group of patient and family partners affected by inflammatory bowel disease (IBD), followed the Joanna Briggs Institute guidelines for evidence synthesis, PRISMA-ScR Checklist, and GRIPP2-Short Form. Ovid MEDLINE, CINAHL, PsychInfo, Embase, and Web of Science were searched until Dec 2024. Extracted data from English-language, peer-reviewed studies included parental experiences, barriers, support needs, and preferences during HCTs. RESULTS In total, 54 studies were included in the review. Parents emphasized the emotional and psychological strain of shifting roles during HCTs as they balanced their need to be actively engaged in their child’s care, while nurturing independence. Reported barriers to parental preparedness included limited access to formal transition education, minimal emotional support, and challenges navigating logistical burdens (e.g., changes in insurance coverage and unfamiliarity with adult care). Findings suggest that supporting parents during HCTs requires actively involving them in transition planning, offering early and joint consultations with pediatric and adult care providers, ensuring the availability of peer-parent and community support opportunities, and broader implementation of coordinated transition programs led by dedicated transition staff. CONCLUSION Our findings point to a critical gap in the uptake of parental perspectives in the development of tailored transition support and resources. Strengthening parental preparedness during HCTs may expectedly lower transition stress and anxiety among parents and caregivers, and further reinforce their ability to more effectively support their own and their child’s transition to adult care. Future Directions This review is part of an innovative, national multi-method patient-led study called PROACT-IBD, which will help make informed recommendations and guide the use of narrative medicine to translate parents’ lived experiences into evidence-based interventions to advance IBD transition care.