Transition Practices in Wisconsin Health Care Systems: What Do We Know?

BACKGROUND: The transition from youth to adult health care is a complex process, and only 25% of all youth and less than 35% of youth with special health care needs in Wisconsin receive support. OBJECTIVES: This article describes the process and results from the Wisconsin Youth Health Transition Initiative's assessment of transition support provided in health care. METHODS: Key informant interviews were undertaken with clinicians from several Wisconsin health care systems. RESULTS: Fifty percent of health care systems interviewed had a formal policy or guideline supporting health care transition. Additionally, several barriers consistent with national trends were confirmed. CONCLUSIONS: Health care transition for Wisconsin youth remains suboptimally supported in practice. Continued funding and work towards this important maternal and child health objective are needed.

Transition to Adult Care in Autoinflammatory Diseases: A Cohort of 111 French Patients.

BACKGROUND: Transitioning from pediatric to adult care is a critical step for individuals with autoinflammatory diseases, requiring effective programs to ensure continuity of care and disease management. Despite various recommendations, the effectiveness of transition programs, particularly in monogenic autoinflammatory diseases, remains understudied. METHODS: A single-center medical records review study was conducted at the French National Reference Center for Adult Autoinflammatory Diseases in Tenon Hospital from 2017 to 2023. All patients who had consulted for the first time between the ages of 15 and 30 years and had received care for an autoinflammatory disease during childhood were included. The patients were classified according to whether they had undergone a transition, defined as either no transition, simple transition (referral letter), or joint transition (pediatrician and adult physician consultation). RESULTS: One hundred eleven patients (median age, 18 years) were included. Patients who consulted without transition started adult follow-up and were followed up less regularly than those who underwent the transition process ( p < 0.001 and p = 0.028). In patients with familial Mediterranean fever, the absence of a formal transition was associated with poorer disease control at baseline ( p = 0.019). The type of transition did not impact disease control during follow-up. CONCLUSIONS: Participation in a transition program is associated with earlier and more regular follow-up in adulthood. Although transition type did not significantly impact disease control during follow-up in familial Mediterranean fever, the potential benefit of joint consultation extends beyond consultation frequency and disease outcomes, encompassing patient perspectives and self-management abilities. This study highlights the significance of collaborative transition programs in AIDs.

Care coordination models for transition and long-term follow-up among childhood cancer survivors: a scoping review.

OBJECTIVES: Childhood cancer survivors may experience complex health issues during transition and long-term follow-up (LTFU); therefore, high-quality healthcare is warranted. Care coordination is one of the essential concepts in advanced healthcare. Care coordination models vary among childhood cancer survivors in transition and LTFU. This study aimed to identify care coordination models for childhood cancer survivors in transition and LTFU and synthesise essential components of the models. DESIGN: This scoping review was guided by the methodological framework from Arksey and O'Malley and was reported with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews. A systematic literature search was conducted on six databases using possible combinations of terms relevant to childhood cancer survivors, transition/LTFU and care coordination model. Data were analysed by descriptive and content analysis. DATA SOURCES: The literature search was first conducted in May 2023 and updated in May 2024. Six databases including Medline, PubMed, Embase, Web of Science, CINAHL and Cochrane Library were searched; meanwhile, a hand search was also conducted. ELIGIBILITY CRITERIA FOR SELECTING STUDIES: Studies relevant to describing any models, interventions or strategies about care coordination of transition or LTFU healthcare services among childhood cancer survivors were included. DATA EXTRACTION AND SYNTHESIS: Two reviewers independently screened and included studies. Basic information as well as care coordination model-related data in the included studies were extracted. Descriptive summary and content analysis were used for data analysis. RESULTS: In the 20 545 citations generated by the search strategy, seven studies were identified. The critical determinants of the models in the included studies were the collaboration of the multidisciplinary team, integration of the navigator role and the provision of patient-centred, family-involved, needs-oriented clinical services. The main functions of the models included risk screening and management, primary care-based services, psychosocial support, health education and counselling, and financial assistance. Models of care coordination were evaluated at patient and clinical levels. Based on this review, core concepts of successful care coordination models for childhood cancer survivors in transition or LTFU were synthesised and proposed as the '3 I' framework: individualisation, interaction and integration. CONCLUSION: This scoping review summarised core elements of care coordination models for childhood cancer survivors' transition and LTFU. A proposed conceptual framework to support and guide the development of care coordination strategies for childhood cancer survivors' transition and LTFU care was developed. Future research is needed to test the proposed model and develop appropriate care coordination strategies for providing high-quality healthcare for childhood cancer survivors' transition and LTFU.

Interventions to support young adults and families with the healthcare transition between paediatric and adult nephrology health services: A systematic scoping review.

BACKGROUND: Healthcare transition can be challenging for young people and families living with chronic kidney conditions, including those with rare renal disorders who often have multi-systemic conditions, those who have undergone kidney transplantation, and those who face intense treatments like dialysis. Comprehensive, holistic healthcare transition interventions are required, encompassing physical, psychosocial, sexual, educational and vocational support. AIM: This manuscript presents a systematic scoping review synthesising the healthcare transition interventions to support youth and families within nephrology services. METHODS: This review followed Arksey and O'Malley's five-stage framework, updated by Levac, Colquhoun and O'Brien and the Joanna Briggs Institute. Six databases were systematically searched: CINAHL Plus with Full Text, Embase, PsycINFO, Web of Science, PubMed, and the Applied Social Sciences Index and Abstracts (ASSIA), locating 12,662 records. Following a systematic screening process, 28 articles met the inclusion criteria. Results were analysed systematically and presented using the PAGER framework developed by Bradbury-Jones et al. (2022). RESULTS: Various interventions were sourced. Three broad patterns emerged: 1. Contextual Factors, e.g. cultural differences between paediatric and adult services; 2. Major Intervention Components, e.g. parental/familial/peer-to-peer support, and 3. Personal factors, e.g., self-management ability. CONCLUSION: Few interventions are available to support youth with rare renal disorders, specifically. Future research must be directed at this cohort. Healthcare transition timing remains hotly contested, with additional guidance required to support decision-making. Finally, limited interventions have been evaluated for practice. IMPLICATIONS: This review has provided various considerations/recommendations that should be taken into account when designing, implementing or evaluating future healthcare transition supports.

Which factors affect post-transfer gaps in follow-up care? A qualitative study of the insights of healthcare providers in Sweden and Belgium.

BACKGROUND: Young people with congenital heart disease (CHD) are frequently affected by discontinued follow-up when transferring from paediatric to adult care. Identified predictors for discontinuation include mostly patient-related factors, and further knowledge of hospital and healthcare system factors is needed. AIM: This study aims to explore patient-related, hospital-related and healthcare system-related factors affecting continued follow-up care after transfer, as perceived and experienced by paediatric cardiology and adult CHD (ACHD) healthcare providers (HCPs) in Sweden and Belgium. METHODS: This descriptive qualitative study included individual interviews with cardiologists, nurses and administrative staff, subjected to qualitative content analysis. A total of 30 HCPs from 13 specialist care outpatient clinics at 8 different centres in Sweden and Belgium were interviewed. HCPs were included if they had direct contact with patients and had at least 1 year of work experience. FINDINGS: The findings illuminate three main categories of factors perceived by HCPs to affect continued follow-up care after transfer, including 'care structure', 'care processes' and 'patient characteristics and circumstances'. Success was described as multifactorial, emphasising processes and structures of care, with a focus on collaboration, organisation, joint responsibility, resources, care relationships and transitional care interventions. Few differences appeared between paediatric and ACHD HCPs and between Swedish and Belgian HCPs. CONCLUSION: HCPs perceived factors on patient, hospital and healthcare system levels to influence continued follow-up. Process-related and structure-related aspects of care were perceived as more influential than individual patient characteristics. Hence, future research on discontinued follow-up care should focus on process-related and structure-related aspects of care delivery.

A Clinician's Guide To Effectively Transitioning and Transferring Care For Pediatric Patients With Inflammatory Bowel Diseases From The Pediatric To Adult Gastroenterologist.

PURPOSE OF REVIEW: Transition of care for pediatric patients with inflammatory bowel diseases (IBD) is a continuous, dynamic process that takes place over several years with a coordinated approach executed by a multidisciplinary team. We review the concepts, tools, and research in effective transitioning and transfer of care for adolescent/young adult patients with IBD. RECENT FINDINGS: Given the constraints within the healthcare system, effective transitioning can be challenging to implement in everyday clinical practice. Different barriers include resources and expertise in effective transitioning by pediatric and adult gastroenterology healthcare providers and the impact of non-gastrointestinal issues facing young adult patients who are learning to manage and coordinate all aspects of their medical care and health maintenance. Factors that facilitate successful care transitioning and transfer include structured transitioning programs, utilization of validated transition checklists, and IBD medical summaries. Proactive transitioning by pediatric gastroenterologists in partnership with their emerging young adult patients with IBD leads to better clinical and psychosocial outcomes and ultimately, effective transfer of care to adult gastroenterology. By utilizing utilize comprehensive transition assessment tools and medical summaries in partnership with their patients, pediatric and adult gastroenterology teams can better prepare patients as they transfer to independent care and health maintenance.

The Crucial Role of Empowerment in Engaging Adolescents and Young Adults for Independence: Essential Strategies and Skills for a Successful Transition.

BACKGROUND: An increasing number of pediatric solid organ transplant (SOT) recipients are surviving into adolescence and young adulthood. The transition from pediatric to adult-oriented care occurs during a unique and vulnerable period. METHODS: Presented here is a structured approach to healthcare transition (HCT) for adolescent and young adult SOT recipients aimed at optimizing independence in order to assist young patients with adherence, self-management, and improved quality of life. RESULTS: Close attention must be paid to neurocognitive development, mental well-being, and social determinants of health. CONCLUSIONS: These efforts require a multidisciplinary team approach as well as collaboration between pediatric and adult providers in order to achieve these goals and patient longevity.

Improving healthcare transition for young people with cancer: factors fundamental to the quality improvement journey.

BACKGROUND: Young people receiving cancer treatment in the South Thames Children's, Teenagers' and Young Adults' Cancer Operational Delivery Network usually receive care across two or more NHS trusts, meaning transition into adult services can be challenging. AIM: To develop a planned, co-ordinated approach to transition across the network that meets National Institute for Health and Care Excellence guidance recommendations for transition and the cancer service specifications. METHODS: A 2-year, nurse-led quality improvement (QI) project, using the principles of experience-based co-design. OUTCOMES: The QI project resulted in the development of six key principles of practice; refining and testing of a benchmarking tool; initiatives to facilitate first transition conversations; and the launch of an information hub. CONCLUSION: Robust QI processes, cross-network collaboration and wide stakeholder involvement required significant resource, but enabled deeper understanding of existing pathways and processes, facilitated the establishment of meaningful objectives, and enabled the testing of interventions to ensure the project outcomes met the needs of all stakeholders.

Quality Indicators for Transition from Pediatric to Adult Care for Youth With Chronic Conditions: Proposal for an Online Modified Delphi Study.

BACKGROUND: The transition from pediatric to adult care poses a significant health system-level challenge impeding the delivery of quality health services for youth with chronic health conditions. In Canada and globally, the transition to adult care is regarded as a top priority in adolescent health in need of readily applicable, adaptable, and relevant national metrics to evaluate and benchmark transition success across disease populations and clinical care settings. Unfortunately, existing literature fails to account for the lack of engagement from youth and caregivers in developing indicators, and its applicability across chronic conditions, primary care involvement, and health equity considerations. OBJECTIVE: Our proposed study aims to establish a consensus-driven set of quality indicators for the transition to adult care that are universally applicable across physical, developmental, and mental health conditions, clinical care settings, and health jurisdictions. METHODS: Using an integrated knowledge translation (iKT) approach, a panel comprising youth, caregivers, interdisciplinary health care providers, and health system leaders will be established to collaborate with our research team to ensure that the study methodology, materials, and knowledge dissemination are suitable and reflect the perspectives of youth and their families. We will then conduct an iterative 3-round Online Modified Delphi (OMD) study (n=160) to (1) compare and contrast the perspectives of youth, caregivers, health care providers, and health system leaders on quality indicators for transition; and (2) prioritize a key set of quality indicators for transition applicable across disease populations that are the most important, useful, and feasible in the Canadian context. Using the RAND/UCLA Appropriateness Method (RAM) multistage analytic approach, data from each panel and stakeholder group will be examined separately and compared to establish a key set of indicators endorsed by both panels. RESULTS: The study is funded by the Canadian Institutes of Health Research and Physicians Services Incorporated. CONCLUSIONS: This study will produce quality indicators to evaluate and inform action equitably to improve transition from pediatric to adult care for youth and their families in Canada. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): PRR1-10.2196/60860.

Pediatric liver transplant recipients are not just young adults: The importance of a structured health care transition program in adult transplant centers.

Health care transition (HCT) is a vulnerable period that continues into adulthood, even after the transfer of care. Given the growing population of pediatric liver transplant recipients reaching young adulthood, the need for a standardized and multidisciplinary approach to transition that spans from pediatric to adult care is becoming more imperative. In this article, we review the unique challenges and barriers to successful HCT that adolescent and young adults (AYAs) who have undergone liver transplant face, highlight the gap in transition care in the adult setting, and present the Six Core Elements of Health Care Transition TM as a framework that can be used by adult providers to incorporate AYAs systematically and collaboratively into adult practice. Multidisciplinary HCT programs should be the standard of care for all AYAs with liver transplant, and while implementation is a necessary first step, ongoing efforts to increase awareness, funding, and research on HCTs into adulthood are needed.

Multi-level factors linked to young adult primary care transitions: evidence from a state all-payer claims analysis.

OBJECTIVE: Delayed transitions from pediatric to adult primary care leads to gaps in medical care. State all-payer claims data was used to assess multilevel factors associated with timely transition from pediatric to adult primary care. MATERIALS AND METHODS: We created a cohort of 4,320 patients aged 17-20 in 2014-2017 continuously enrolled in health insurance 36 months between 2014 and 2019 and attributed to a pediatric provider in months 1-12. We also constructed primary care provider networks identifying links between providers who saw members of the same family. Logistic regression was used to predict adult primary care in months 25-36 on family, provider, and county-level factors. Finally, we modeled the effect of county and network cluster membership on care transitions. RESULTS: Male sex, having another family member seeing a pediatrician, and residing in a county with high pediatric care capacity or low adult primary care capacity were associated with lower odds of adult primary care transition. DISCUSSION: We investigated factors associated with successful transitions from pediatric to adult primary care. Family ties to a pediatrician and robust county capacity to provide primary care to children were associated with non-transition to adult primary care. CONCLUSION: Multiple level factors contribute to non-transition to adult primary care. Understanding the factors associated with appropriate transition can help inform state and national policy.

ERS statement on transition of care in childhood interstitial lung diseases.

Interstitial lung diseases (ILD) are a heterogeneous group of rare diffuse diseases affecting the lung parenchyma in children and adults. Childhood interstitial lung diseases (chILD) are often diagnosed at very young age, affect the developing lung, and can have different presentations and prognosis compared to adult forms of these diseases. In addition, chILD in many cases may apparently remit, and have a better response to therapy and better prognosis than adult ILD. Many affected children will reach adulthood with minimal activity or clinical remission of the disease. They need continuing care and follow-up from childhood to adulthood if the disease persists and progresses over time, but also if they are asymptomatic and in full remission. Therefore, for every chILD patient an active transition process from paediatric to adult care should be guaranteed. This European Respiratory Society (ERS) statement provides a review of the literature and current practice concerning transition of care in chILD. It draws on work in existing transition care programmes in other chronic respiratory diseases, disease-overarching transition-of-care programmes, evidence on the impact of these programmes on clinical outcomes, current evidence regarding long-term remission of chILD as well as the lack of harmonisation between the current adult ILD and chILD classifications impacting on transition of care. While the transition system is well established in several chronic diseases, such as cystic fibrosis or diabetes mellitus, we could not find sufficient published evidence on transition systems in chILD. This statement summarises current knowledge, but cannot yet provide evidence-based recommendations for clinical practice.

Rol de la figura de enlace en el modelo e transición en endocrinología. Experiencia en el ámbito público / Role of the liaison person in the transition model in Endocrinology. Experience in the public setting

Un proceso de transición planificado entre los sistemas de salud pediátricos y de adultos es necesario para poder garantizar una continuidad en la atención de los adolescentes. El objetivo del trabajo fue evaluar la población de pacientes del Servicio de Endocrinología del Hospital Garrahan en fase de transición y sus familias, desarrollar un protocolo para la transición de los adolescentes con patología endocrinológica crónica al Hospital de Clínicas José de San Martin y evaluar el rol de la "figura de enlace" en este proceso. Materiales y Métodos: Estudio observacional, transversal/prospectivo. Se obtuvieron datos sobre la consulta ambulatoria de 72 adolescentes mayores a 15 años con patología endocrinológica a los cuales se los acompañó en el proceso de transición. Se realizaron entrevistas y encuestas a los adolescentes, sus familias y a 16 endocrinólogos intervinientes en el seguimiento (9 pediátricos- 7 adultos). Resultados: La mayoría de los adolescentes evidenciaron falta de autonomía general, con mayor afectación en el área de "seguimiento de los problemas de salud". Esto, junto al paternalismo del pediatra y la sobreprotección familiar representaron inconvenientes para la transición. La mitad de los adultos entrevistados consideraron falta de autonomía o preparación en sus hijos considerando la edad ideal para la transición entre los 18-21 años. Las sensaciones referidas por los pacientes como sus acompañantes incluyen principalmente el miedo y ansiedad, y llamativamente en los pacientes la vergüenza. La creación de un consultorio de transición en el centro de adultos y el acompañamiento de la "figura de enlace", permitieron una mejor articulación y continuidad en el cuidado de la salud (AU)

TA planned transition process between pediatric and adult health systems is necessary to ensure continuity of care for adolescents. The aim of this study was to evaluate the patient population of the Endocrinology Service at Garrahan Hospital during the transition phase, along with their families, to develop a protocol for transitioning adolescents with chronic endocrinological disorders to Hospital de Clínicas José de San Martín, and to evaluate the role of the "liaison person" in this process. Materials and Methods: This observational, cross-sectional/ prospective study obtained data from outpatient consultations of 72 adolescents over 15 years of age with endocrinological disorders who were accompanied during the transition process. Interviews and surveys were conducted with the adolescents, their families, and 16 endocrinologists involved in the follow-up (9 pediatricians and 7 adult physicians). Results: Most of the adolescents showed a general lack of autonomy, with greater challenges in the area of "follow-up of health problems." This, combined with the paternalism of the pediatrician and the overprotection of the family, represented obstacles to the transition. Half of the parents interviewed perceived a lack of autonomy or preparation in their children, considering the ideal age for transition to be between 18-21 years old. The primary feelings reported by the patients and those who accompanied them included fear and anxiety, with patients also feeling embarrassment. The creation of a transition clinic in the adult center and the support of a "liaison person" allowed for better coordination and continuity in health care (AU)

Factores de riesgo asociados a mala adherencia en adolescentes trasplantados hepáticos en transición / Risk factors associated with poor adherence in adolescent liver transplant recipients in transition

Cada vez más pacientes trasplantados hepáticos durante la edad pediátrica alcanzan la adultez debido al aumento en las tasas de sobrevida a largo plazo, por lo que requieren continuar su atención en un centro de adultos. Este pasaje entre centros se asocia con peores resultados clínicos y mayor mala adherencia, debido al momento de vulnerabilidad que representa este momento en la atención médica y por el mismo momento vital atravesado por el paciente adolescente. La mayoría de los centros de trasplantes establecieron programas de transición para mejorar estos resultados. Para que estos programas sean efectivos, deben conocerse las barreras y los facilitadores de adherencia tanto en el paciente como en su entorno. El objetivo de este trabajo es reconocer estos factores de riesgo y su relación con mala adherencia y resultados clínicos, y realizar un seguimiento a corto plazo de los pacientes transferidos a un centro de atención de adultos. Para esto, se realizó una encuesta pre y post derivación a una cohorte de pacientes adolescentes del Hospital Garrahan. Para medir mala adherencia se utilizaron métodos objetivos y subjetivos, cada uno de los cuales correlacionó con distintos factores de riesgo, como presencia de violencia, consumo de sustancias y déficit educativo. Como conclusión, medir la mala adherencia es complejo debido a que su origen es multifactorial. Al parecer, combinar cuestionarios validados con entrevistas no estructuradas es la estrategia más efectiva para detectar mala adherencia en la consulta médica. Luego, las variables psicosociales están cobrando cada vez más relevancia y deben ser consideradas en los programas de transición de los servicios de trasplante si se quiere lograr un seguimiento a largo plazo exitoso (AU)

An increasing number of pediatric liver transplant patients reach adulthood due to the increase in long-term survival rates, and therefore require continued care in an adult center. This transition between centers is associated with worse clinical outcomes and poorer adherence, due to the vulnerability that this moment in medical care represents and the same vital moment that the adolescent patient goes through. Most transplant centers have established Transition Programs to improve these outcomes. For these programs to be effective, the barriers and facilitators of adherence in both the patient and their environment should be known. The aim of this study was to identify these risk factors and their relationship with poor adherence and clinical outcomes, and to perform a short-term follow-up of patients transferred to an adult care center. For this purpose, a pre- and post-referral survey was conducted on a cohort of adolescent patients from the Garrahan Hospital. Objective and subjective methods were used to measure poor adherence, each of which correlated with different risk factors, such as the presence of violence, substance use, and educational deficits. In conclusion, measuring poor adherence is complex because its origin is multifactorial. Combining validated questionnaires with unstructured interviews seems to be the most effective strategy for detecting poor adherence in the medical consultation. Therefore, psychosocial variables are becoming increasingly relevant and should be considered in the Transition Programs of transplantation services if a successful longterm follow-up is to be achieved (AU)

Transición a la medicina del adulto en sobrevivientes de un trasplante alogénico de células progenitoras hematopoyéticas / Transition to adult medicine in survivors of allogeneic hematopoietic stem cell transplantation

Los sobrevivientes de un trasplante alogénico de células progenitoras hematopoyéticas (TACPH) pediátrico presentan alto riesgo de padecer problemas de salud. Debido a esta vulnerabilidad, la continuidad del cuidado impacta en su pronóstico y la transición a la medicina del adulto (TMA) es un proceso clave. Objetivo: Evaluar el proceso actual de TMA de los receptores de TACPH en nuestro hospital. Métodos: Diseño: observacional retrospectivo y prospectivo. Población: todos los pacientes (p) que realizaron su TMA desde enero/2022 a marzo/2023. Instrumentos: entrevista personal; material escrito; resumen de historia clínica; escalas TRAQ 5.0 (transición), PedsQL 4.0 (CVRS) y Lansky (funcionalidad); elección de estrategias de seguimiento según complejidad y requerimientos; contacto con profesionales de adultos; entrevista telefónica luego de 6 meses posTMA; red conformada. Resultados: 36p completaron la TAM (33 presencial, 3 virtual). Edad m19 años (m6 años de seguimiento), 70% del interior del país, 58% TACPH por enfermedad maligna, 64% TACPH familiar. A la TMA: antecedente EICHc 50%, segunda enfermedad maligna 2%, compromiso órganos 75% (m2/p, r0-8, mayormente endocrinológicas, oculares y neurológicas), 94% Lansky ≥80 (r50-100), PedsQL m82 (27% ≤75), TRAQ m3.4 (r1.7- 4.8). Derivación: todos los p cubrían sus necesidades (30% en centros de alta complejidad o expertos en THA) pero 3p debieron readecuar las estrategias, 5p presentaban complicaciones en actividad o necesidad de pronta resolución. Contacto posterior: 30/33p continuaban seguimiento, 3p pudieron retomarlo, 9p nuevas complicaciones/tratamientos. Red: 20 profesionales/instituciones. Conclusiones: Se refuerza la necesidad y utilidad de un proceso de TMA tanto formal como personalizado según necesidades individuales de los pacientes con TACPH (AU)

Pediatric allogeneic hematopoietic stem cell transplant (HSCT) survivors are at high risk for health problems. Because of this vulnerability, continuity of care impacts their prognosis and transition to adult medicine (TAM) is a key process. Objective: To evaluate the current process of TAM of HSCT recipients in our hospital. Methods: A retrospective and prospective observational study was conducted. The population included all patients (p) who underwent TAM from January 2022 to March 2023. Instruments used included personal interviews, written materials, medical history summaries, the TRAQ 5.0 (transition), PedsQL 4.0 (HRQoL), and Lansky (functionality) scales. Follow-up strategies were chosen according to complexity and requirements, with contact established with adult professionals and a telephone interview conducted six months post-TAM in an established network network. Results: 36p completed TAM (33 face-to-face, 3 online). Mean age was 19 years (with a mean of 6 years of follow-up); 70% were from the provinces of the country, 58% underwent HSCT due to malignant disease, 64% had familial HSCT. At TAM: 50% had a history of GVHD, 2% had a second malignant disease, and 75% had organ involvement (mean of 2 per patient, ranging from 0 to 8, mostly endocrinological, ocular, and neurological), 94% had Lansky ≥80 (range, 50-100), mean PedsQL was 82 (27% ≤75), mean TRAQ was 3.4 (range, 1.7-4.8). Referral needs were met for all patients (30% in tertiary-level centers or with experts in allogeneic HSCT), although 3 patients had to readjust strategies, and 5 had complications requiring prompt resolution. In subsequent contact, 30 out of 33 patients continued follow-up, 3 resumed it, and 9 experienced new complications or treatments. The network included 20 healthcare providers/institutions. Conclusions: This study reinforces the need for and usefulness of a formal and personalized TAM process according to the individual needs of patients with HSCT (AU)

Experiencia de la transición en un Servicio de Adolescencia / Transition experience in an Adolescence Unit

Se define transición como el proceso de preparación, adaptación e integración paulatina por el cual un paciente joven con una patología crónica desarrolla las habilidades y dispone de los recursos Se aborda la experiencia y estadística de la Unidad de Adolescencia y Transición durante el 2022. Materiales y métodos: estudio descriptivo, observacional, retrospectivo y de corte transversal. Se incluyeron en el estudio los adolescentes de entre 17 y 21 años atendidos en el servicio de adolescencia del Hospital J.P Garrahan durante el periodo de 1 enero 2022 al 31 de diciembre de 2022. Resultados: se incluyeron 179 pacientes (111 eran mujeres, 68 varones, incluido un trans varón). La mediana de edad de derivación al servicio de adolescencia fue de 17,26 años. Provenían del Gran Buenos Aires el 74% de los pacientes. Se logró la transición del 62.2% (112 pacientes). El principal centro de derivación fue el Hospital de Clínicas con el 21.3% (24 pacientes) Conclusión: Aunque los resultados mostrados son favorables, es necesaria una correcta valoración y evaluación inicial del paciente, con una planificación pertinente del proceso y con la incorporación de un equipo de transición o unidad transicional (AU)

Transition is defined as the process of preparation, adaptation, and gradual integration by which a young pa - tient with a chronic condition develops the skills and resources needed for adult care. Materials and Methods: This was a descriptive, observational, retrospective, and cross-sectional study. Adolescents between 17 and 21 years of age seen at the Adolescence Unit of the J.P Garrahan Hospital from January 1, 2022, to December 31, 2022, were included in the study. Results: A total of 179 patients were included (111 female, 68 male, including one trans male). The median age of referral to the Adolescence Unit was 17.26 years. Seventy-four percent of the patients came from the Greater Buenos Aires area. Transition was achieved in 62.2% (112 patients). The main referral center was the Hospital de Clínicas, with 21.3% (24 patients). Conclusion: Although the results are favorable, a correct initial evaluation and assessment of the patient is necessary, along with relevant planning of the process and the incorporation of a transition team or transitional unit (AU)

Transición del paciente adolescente con mielomeningocele en su paso al hospital de adultos / Transition of the adolescent patient with myelomeningocele to adult hospital care

El acceso a una salud integral de calidad a lo largo de la vida es un derecho de todos los adolescentes y jóvenes; pero sobre todo resulta relevante en aquellos pacientes con enfermedades complejas crónicas como el mielomeningocele pues de no realizarse tiene repercusión notoria sobre su estado de salud con mayor riesgo de morbimortalidad. En este artículo se comenta la experiencia sobre transición de pacientes con mielomeningocele que se realizó en forma organizada entre los servicios de Consultorio de Mielomeningocele y Hospital de día Polivalente del Hospital Garrahan y el Servicio de Adolescencia del Hospital Ramos Mejía. Se trata de un nuevo modelo asistencial de trabajo interdisciplinario y colaborativo teniendo como eje una fluida comunicación interinstitucional. Este acuerdo formal entre ambos hospitales contó con el recurso humano especializado y la estructura física adecuada para el abordaje integral de esta compleja enfermedad crónica. Este programa propició un entorno al paciente que aseguró el seguimiento por equipos interdisciplinarios. Esta es la mejor opción para brindar un cuidado integral, equitativo, coordinado y accesible mejorando la calidad de vida de los pacientes con mielomeningocele a largo plazo (AU)

Access to quality comprehensive health throughout life is a right of all adolescents and young people; but above all it is relevant in those patients with complex chronic diseases such as myelomeningocele because if it is not performed it has a notable impact on their health status with a greater risk of morbidity and mortality. This article discusses the transition experience of patients with myelomeningocele that was carried out in an organized manner between the Myelomeningocele Clinic and Multipurpose Day Hospital services of the Garrahan Hospital and the Adolescence Service of the Ramos Mejía Hospital. It is a new care model of interdisciplinary and collaborative work with fluid inter-institutional communication as its axis. This formal agreement between both hospitals had specialized human resources and the appropriate physical structure for the comprehensive approach to this complex chronic disease. This program provided an environment for the patient that ensured follow-up by interdisciplinary teams. This is the best option to provide comprehensive, equitable, coordinated and accessible care, improving the quality of life of patients with myelomeningocele in the long term (AU)

Adolescencia, adherencia y transición: Experiencia de un centro de trasplante renal pediátrico / Adolescence, adherence, and transition: Experience from a pediatric renal transplant center

Con el advenimiento de nuevas técnicas quirúrgicas y medicaciones inmunosupresoras la sobrevida de los niños trasplantados mejoró, llegando a la adultez. La continuidad de su tratamiento requiere un proceso planificado que permita su tránsito a un sistema de salud orientado al adulto. El objeto de este trabajo es mostrar la transición a centros de adultos en una cohorte de pacientes trasplantados renales en el Hospital Garrahan, describir sus características clínicas y demográficas, su evolución, y oportunidades de mejora implementadas. Debido a cambios médicos y su abordaje desde la interdisciplina, se dividió a la población en tres periodos: era 1 (1988-1999), era 2 (2000-2009), y era 3 (2010- 2023). En la era 1, 179 adolescentes continuaron su atención médica en un centro de adultos, 212 en la era 2 y 201 en la era 3. En la era 1 el seguimiento estaba coordinado por el nefrólogo de cabecera y eran consultados los servicios de Urología, Servicio Social y Salud Mental. En la era 2, se fortaleció el trabajo en interdisciplina y aún más a partir del 2011. Surgieron centros de trasplante de adultos que recibían adolescentes y médicos dedicados a ellos en forma preferencial. En la actualidad la transición comienza a los 12 años y progresa hasta los 18. El modelo implementado es la transición directa, entre el nefrólogo pediatra y el de adultos, con varias consultas secuenciales en ambos centros. Si bien la sobrevida del paciente e injerto mejoraron, el rechazo, asociado a no adherencia, es una asignatura por mejorar (AU)

With the advent of new surgical techniques and immunosuppressive medications, the survival of transplanted children has improved, allowing them to reach adulthood. The continuity of their treatment requires a planned process that facilitates their transition to an adult-oriented healthcare system. The aim of this study was to examine the transition to adult centers in a cohort of renal transplant patients at Garrahan Hospital, describing their clinical and demographic characteristics, their evolution, and the improvement opportunities implemented. Based on medical changes and the interdisciplinary approach, the population was divided into three periods: era 1 (1988- 1999), era 2 (2000-2009), and era 3 (2010-2023). In era 1, 179 adolescents continued their medical care in an adult center, 212 in era 2, and 201 in era 3. In era 1, follow-up was coordinated by the attending nephrologist with consultations from Urology, Social Services, and Mental Health Services. In era 2, interdisciplinary work was strengthened, and even more so since 2011. Adult transplant centers were created to receive adolescents with physicians dedicated to their care on a preferential basis. Currently, the transition begins at 12 years of age and progresses up to 18. The implemented model involves direct transition between the pediatric nephrologist and the adult nephrologist, with several sequential consultations in both centers. Although patient and graft survival have improved, rejection associated with non-adherence remains an area for improvement