Role of primary care in enhancing continuity of care for adolescents and young adults with chronic kidney disease undergoing transition to adult health services.

The transition from pediatric to adult health care is a vulnerable period for adolescents and young adults (AYA) with chronic conditions as it involves a multitude of changes and challenges while they enter adulthood. The transition to adult care can be particularly challenging for AYA living with chronic kidney disease (CKD) due to the complex care needed for treatment. Continuity of care is crucial for a successful transition to adult health care. The aim of this educational review is to discuss the potential role of primary care providers in the transition from pediatric to adult health services for AYA with CKD and kidney failure treated with dialysis and/or transplant. We address the significance of the medical home model and how it can provide continuity of care for AYA with CKD. Primary care providers can enhance care for AYA with chronic conditions by providing continuity of care, reducing exacerbation of chronic health conditions, providing holistic care, and fostering collaboration with specialists. Despite their vital role, primary care providers face barriers in maintaining this continuity, necessitating further attention and support in this area. By addressing these barriers and encouraging primary care providers to work alongside pediatric and adult nephrologists during the transition to adult health care, there are significant opportunities to improve the care and health outcomes of AYA with CKD.

Desafios da equipe interprofissionalna transição do cuidado hospitalar parao domicílio de pacientes oncológicos / Challenges of the interprofessional team in the transition from hospital care to home care for cancer patients

Os pacientes oncológicos necessitam de uma assistência integral, sobretudo no que se refere à transição do cuidado em saúde entre os diferentes locais e níveis de cuidado. Este estudo tem como objetivo investigar se existem protocolos assistenciais utilizados pela equipe interprofissional sobre a transição do cuidado oncológico hospitalar para o domicílio e identificar as estratégias utilizadas no planejamento e orientações da alta hospitalar. Trata-se de um estudo descritivo de abordagem qualitativa, realizado através de Grupo Focal, com profissionais da equipe interprofissional que atuam diretamente com o cuidado oncológico, em hospital filantrópico, localizado no interior do Estado do Rio Grande do Sul. Construíram-se categorias que elencaram as principais características: Desafios na transição do cuidado para a rede de atenção primária e domiciliar e Sugestões para a mudança nas intervenções do cuidado integrado em oncologia. Constatou-se que a equipe interprofissional apresenta dificuldades na compreensão sobre a transição do cuidado e a necessidade de uma maior quantitativo de colaboradores para a qualificação da assistência.(AU)

Cancer patients need comprehensive care, especially with regard to the transition of health care between different locations and levels of care. This study aims to investigate whether there are care protocols used by the interprofessional team on the transition from hospital to home oncology care and to identify the strategies used in hospital discharge planning and guidance. This is a descriptive study with a qualitative approach, carried out through focus groups with professionals from the interprofessional team who work directly with cancer care in a philanthropic hospital located in the interior of the state of Rio Grande do Sul. Categories were constructed which listed the main characteristics: Challenges in the transition of care to the primary and home care network and Suggestions for change in integrated oncology care interventions. It was found that the interprofessional team has difficulties in understanding the transition of care and the need for a greater number of collaborators to improve care.(AU)

Los pacientes oncológicos requieren una atención integral, especialmente en lo que se refiere a la transición de la asistencia sanitaria entre diferentes lugares y niveles asistenciales. Este estudio pretende investigar si existen protocolos asistenciales utilizados por el equipo interprofesional en la transición de la atención oncológica hospitalaria a la domiciliaria e identificar las estrategias utilizadas en la planificación y guías de alta hospitalaria. Se trata de un estudio descriptivo con abordaje cualitativo, realizado a través de grupos focales con profesionales del equipo interprofesional que trabajan directamente con la atención oncológica en un hospital filantrópico localizado en el interior del estado de Rio Grande do Sul. Se construyeron categorías que enumeraron las principales características: Desafíos en la transición de la atención a la red de atención primaria y domiciliaria y Sugerencias de cambio en las intervenciones de atención oncológica integrada. Se encontró que el equipo interprofesional tiene dificultades en la comprensión de la transición de la atención y la necesidad de un mayor número de colaboradores para mejorar la atención.(AU)

Transition from Paediatric to adult health services: Aspirations and practices of human flourishing.

BACKGROUND: Transition from paediatric to adult care is challenging for youths with a chronic condition. Most transition programmes place high value in autonomy and independence. We undertook a qualitative study to: (1) identify the needs and aspirations of youths and (2) better understand the well-being and flourishing of youths. METHODS: Semi-structured interviews were conducted with youths, parents of youths and healthcare professionals recruited from four clinics. Thematic analysis focused on: (1) perceptions of transition; (2) key aspects of human flourishing during transition; and (3) salient concerns with respect to the transition and dimensions of human flourishing. RESULTS: 54 interviews were conducted. Perceptions of transition clustered around: (1) apprehension about adult care; (2) lack of clarity about the transition process; (3) emotional attachment to paediatric healthcare professionals; (4) the significance of the coinciding transition into adulthood. Fourteen salient concerns (e.g., Knowledge and information about the transition, Parental involvement in healthcare) were identified with corresponding recommendations. Salient concerns related to important dimensions of human flourishing (e.g., environmental mastery, autonomy). DISCUSSION AND CONCLUSION: The flourishing of youths is affected by suboptimal transition practices. We discuss the implications of our findings for environmental mastery, contextual autonomy, and the holistic and humanistic aspects of transition.

Clinics dedicated to transition preparation for adolescents and young adults with chronic conditions: Factors influencing their use.

To pool resources and reduce inequalities in access to transition preparation for patients, transition clinics were created in France. They are places in hospitals, independent of the usual care departments, offering multiple resources and services for adolescents and their parents. Of the 24 physicians from care departments who were surveyed, half of them do not use transition clinics. The implementation of transition clinics in hospitals did not lead to their adoption by the care departments that needed the most support for transition preparation of their patients. A strategy improving adoption is needed to allow transition clinics to reduce inequalities.

Growing Up Can Be Hard to Do: Reimagining 1 Structurally Supportive Pediatric-to-Adult Transitions of Care from a Rights-Based Perspective.

Extended life expectancies and shifting dynamics in chronic disease have changed the landscape of public health interventions worldwide, with an increasing emphasis on chronic care. As a result, transition from pediatric to adult care for medically complex adolescents and young adults is a growing area of intervention. Transition medicine is a nascent field whose current emphasis is on middle- and high-income countries, and thus far its methods and discourse have reflected those origins. Through several case-based examples, this paper aims to highlight the possibilities of an analytic approach grounded in structural competency for transforming transition medicine through a human rights-based framework, with an emphasis on imagining a more global framework for transition medicine. Our cases highlight the disparities between patients navigating pediatric to adult-based care, illuminating social stigma, stratification between public and private insurances, engagement in risk-taking behaviors, family conflict, and challenges with transition readiness. To reimagine transition medicine so that it is based on human rights, we must prioritize structural solutions that embrace multisectoral integration and holistic mental health support rather than oppress and marginalize these critical systemic adaptations. We aim to reconfigure this scaffolding to center structures that integrate holistic well-being and imagine alternate realities to healing. Our work contributes to the literature bringing structural competency to new spaces of clinical practice, contextualizing new frontiers for the exploration of chronic diseases across diverse clinical contexts worldwide.

Long-term mechanical ventilation and transitions in care: A narrative review.

OBJECTIVES: Individuals dependent on long-term mechanical ventilation (LTMV) for their day-to-day living are a heterogenous population who go through several transitions over their lifetime. This paper describes three transitions: 1) institution/hospital to community/home, 2) pediatric to adult care, and 3) active treatment to end-of-life for ventilator-assisted individuals (VAIs). METHODS: A narrative review based on literature and the author's collective practical and research experience. Four online databases were searched for relevant articles. A manual search for additional articles was completed and the results are summarized. RESULTS: Transitions from hospital to home, pediatric to adult care, and to end-of-life for VAIs are complex and challenging processes. Although there are several LTMV clinical practice guidelines highlighting key components for successful transition, there still exists gaps and inconsistencies in care. Most of the literature and experiences reported to date have been in developed countries or geographic areas with funded healthcare systems. CONCLUSIONS: For successful transitions, the VAIs and their support network must be front-and-center. There should be a coordinated, systematic, and holistic plan (including a multi-disciplinary team), life-time follow-up, with bespoke consideration of jurisdiction and individual circumstances.

Transition of Care for Patients with Thalassemia.

Thalassemia is one of the most common hemoglobinopathies affecting a large number of people in India and other countries of South-East Asia. For patients with most severe form of the disease- Transfusion Dependent Thalassemia (TDT), stem cell transplantation or gene therapy are only curative treatment which are not available to most of the patients because of lack of experts, financial constraints and lack of suitable donors. In such situations, most cases are managed with regular blood transfusion and iron chelation therapy. With this treatment, over the years, survival of the patients has improved and 20-40% cases are entering into adulthood. In the absence of structured transition of care programs, currently most adult TDT patients are being managed by pediatricians. This article highlights the need for transition of care for TDT patients, barriers to transition and how to overcome the barriers and process of transition of care to adult care team. The importance of empowering the patients in self-management of the disease and educating the adult care team to achieve the desired outcome of transition program is highlighted.

Transitioning care for adolescents with spina bifida in the US: challenges for management.

Open spina bifida (OSB) is a common neural tube defect. Medical and surgical care involves addressing the baseline orthopedic, urologic, and neurological dysfunction as well as the changes or declines that may occur as the patient ages. Given the complexity of this disease, coordinated, multidisciplinary care involving specialists in neurosurgery, orthopedics, urology, rehabilitation and physical medicine, pediatrics, and psychology is necessary to establish and optimize baseline function. Traditionally in the US, pediatric multispecialty spina bifida clinics have provided the patient with a coordinated medical support system. Unfortunately, this coordinated, medical home has been difficult to establish during the transition from pediatric to adult care. Medical professionals must have a strong understanding of OSB to properly manage the disease and detect and prevent associated complications. In this manuscript, we (1) describe the changing needs and challenges of people living with OSB over a lifespan, (2) delineate current practices in the transition of care for people with OSB from childhood to adulthood, and (3) provide recommendations for best practices in navigating the transition process for clinicians who provide care for those afflicted with this most complex congenital abnormality of the nervous system compatible with long term survival.

Challenges Waiting for an Adult with DSD.

BACKGROUND: Disorders/differences of sex development (DSD) comprise a heterogeneous group of inborn conditions where the individual's sex chromosomes, gonads, and/or anatomical sex are discordant. Since the Chicago Consensus Conference in 2005, multidisciplinary care has been implemented in specialised paediatric tertiary care centres and clinical practice has substantially changed towards a more holistic approach. SUMMARY: Psychological support has become a key factor in the management of DSD. After paediatric care, one of the main challenges is the transition of patients to expert care in adulthood. Patients frequently experience difficulties in accessing specialised medical care in adulthood, resulting in loss to follow-up affecting the patients' physical and psychological health as well as quality of life. Clinical features and long-term outcomes are highly variable in most DSD conditions. Although medical care has improved, morbidity and mortality are increased in all conditions. A particular challenge in the care of DSD patients in adulthood is optimisation of fertility potential. Ideally, this is addressed already in adolescence and requires close interaction of not only paediatricians and adult endocrinologists but also urologists, andrologists or gynaecologists, and psychologists. KEY MESSAGES: This review addresses issues relating to transition of DSD care from the paediatric to adult care as well as health-related challenges in adulthood in DSD.

Opportunities for Inclusion and Engagement in the Transition of Autistic Youth from Pediatric to Adult Healthcare: A Qualitative Study.

Transitioning autistic youth from pediatric to adult healthcare requires coordination of multiple stakeholders, including youth, caregivers, and pediatric and adult care providers, whose interests at times overlap but often differ. To understand barriers and facilitators to inclusive transition experiences, we conducted thematic analysis of interviews with 39 stakeholders from the same large, integrated healthcare system. We identified three major themes: (1) Navigating the healthcare transition without guidance, (2) Health consequences of a passive healthcare transition, and (3) Strategies for inclusion and continuous engagement. Facilitators included gradual transition planning, a warm handoff between providers, and support of shared healthcare decision-making. Providers also sought clinical tools and logistical supports such as care coordinators and longer transition-specific visit types to enhance patient-centered care.

Management of congenital hypogonadotropic hypogonadism in females.

This review explores the challenges in the diagnosis of hypogonadotropic hypogonadism, the transition of care from paediatric to adult care and the considerable health implications of this condition. The role gynaecologists and general practitioners have in managing hormone replacement therapy and reproductive potential is also highlighted. The fertility treatment options, which include ovulation induction with gonadotrophins and in-vitro fertilisation, are discussed in detail along with highlighting the fact that anovulation and markers of low ovarian reserve prior to priming treatment may not be reflective of poor reproductive potential. The holistic management of women with hypogonadotropic hypogonadism is still not standardised and evidence for subfertility management is scarce. This review aims to highlight this concern and provide guidance by evaluating current evidence.

Transition of Adolescents With Severe Asthma From Pediatric to Adult Care in Spain: The STAR Consensus.

OBJECTIVES: To assess the degree of consensus among a multidisciplinary expert panel on the transition of adolescents with severe asthma from pediatric to adult care. METHODS: A 61-item survey was developed based on guidelines for other chronic diseases, covering transition planning, preparation, effective transfer, and follow-up. A 2-round Delphi process assessed the degree of consensus among 98 experts (49 pediatricians, 24 allergists, and 25 pulmonologists). Consensus was established with ≥70% agreement. RESULTS: Consensus was reached for 42 items (70%). Panelists were unable to agree on an age range for initiation of transition. The main goal during the transition identified by the experts is for adolescents to gain autonomy in managing severe asthma and prescribed treatments. The panelists agreed on the importance of developing an individualized plan, promoting patient autonomy, and identifying factors associated with the home environment. They agreed that the adult health care team should have expertise in severe asthma, biologics, and management of adolescent patients. Pediatric and adult health care teams should share clinical information, agree on the criteria for maintaining biological therapy, and have an on-site joint visit with the patient before the effective transfer. Adult health care professionals should closely follow the patient after the effective transfer to ensure correct inhaler technique, adherence, and attendance at health care appointments. CONCLUSION: This consensus document provides the first roadmap for Spanish pediatric and adult teams to ensure that key aspects of the transition process in severe asthma are covered. The implementation of these recommendations will improve the quality of care offered to the patient.

Transition to adult care in cystic fibrosis: The challenges and the structure.

In developed countries, it is projected that there will be a 70% increase in the number of adults living with Cystic Fibrosis (CF) between 2010 and 2025. This shift in demographics highlights the importance of high-quality transition programmes with developmentally appropriate integrated health care services as the individual moves through adolescence to adulthood. Adolescents living with CF face additional and unique challenges that may have long-term impacts on their health, quality of life and life-expectancy. CF specific issues around socially challenging symptoms, body image, reproductive health and treatment burden differentiate people with CF from their peers and require clinicians to identify and address these issues during the transition process. This review provides an overview of the health, developmental and psychosocial challenges faced by individuals with CF, their guardians and health care teams considering the fundamental components and tools that are required to build a transition programme that can be tailored to suit individual CF clinics.

Stepping up: retention in HIV care within an integrated health care transition program.

Strategies are needed to optimize HIV health care transition (HCT). We describe HCT outcomes within the University of Maryland STEP Program, which is built upon integration of an adult HIV provider and navigator into the pediatric clinic, and coordinated collaboration between pediatric and adult HIV multi-disciplinary care teams. These outcomes were compared to a historical institutional HCT cohort (N = 50) which attempted transition in an earlier time period (2004-2012). Fifty-eight patients were enrolled during the study period, and 34 attempted HCT. In total, 84 patients underwent attempted HCT. In the STEP cohort, linkage to adult care was 94% and 12 month retention in adult care (95%) was statistically higher compared to the historical cohort. Rates of viral suppression did not differ pre- and post-HCT among STEP Program patients. These results support the concept of an integrated pediatric and adult HIV HCT model though the ability to achieve sustainable HCT success will require further study.

Enabling successful transition-Evaluation of a transition to adult care program for pediatric liver transplant recipients.

BACKGROUND: This study aimed to evaluate the transition to adult care program instituted for liver transplant recipients (LTRs) at a large tertiary pediatric hospital in Melbourne, Australia. Evaluation included the change in a Global Assessment Measure (GAM) before and after the transition program, satisfaction with the program, and measures of transition success including rejection rates and attendance at appointments post-transfer. We hypothesized that the introduction of our structured transition program would improve disease understanding, health system understanding, and self-care. We also hypothesized that those who had undergone the transition program would have lower failure to attend rates and lower rates of rejection than historical controls. METHODS: A LTR transition program was instituted at our service from 2013 to 2015. The program involved initial assessment of competencies with a Global Assessment Measure (GAM), followed by the introduction of a personalized goal setting program addressing issues identified in dedicated transition clinics. Assessment of competencies was compared between the commencement of the program and immediately prior to transfer. Patient satisfaction with the transition process was assessed at an interview 6-12 months after transfer to the adult service. Rejection rates and failure to attend rates were compared between the intervention group and a group of LTRs who did not receive the intervention. RESULTS: Twenty-eight LTRs participated in the study; 20 received the transition intervention and 8 served as controls. Within the intervention group, all domains of transition competency and reported anxiety regarding transferring had significantly improved at the conclusion of the intervention and all reported satisfaction with the transition program with most (81%) reporting readiness to transfer. There were no significant differences in rejection rates or failure to attend rates between those who did and did not receive the transition intervention. CONCLUSION: A longitudinal holistic transition program has the potential to positively impact the competencies and readiness of LTRs to successful transition and transfer to adult care.

A qualitative study of risk and resilience in young adult women with a history of juvenile-onset fibromyalgia.

BACKGROUND: Juvenile-onset Fibromyalgia (JFM) is a chronic pain condition characterized by widespread musculoskeletal pain, fatigue, sleep difficulties, mood concerns, and other associated symptoms. Although diagnosed in childhood, JFM often persists into adulthood can result in continued physical, social, and psychological impairment. The purpose of this qualitative study was to identify themes of risk and resilience for long-term outcomes among young adults diagnosed with JFM in childhood. METHODS: The sample included 13 young adults (ages 26-34) who had been diagnosed with JFM in adolescence. Focus groups were used to elicit qualitative information about living with JFM and perceived challenges and buffering factors impacting their adjustment. RESULTS: The majority of participants (80%, N = 12) continued to meet criteria for fibromyalgia (FM). An iterative, thematic analysis revealed themes of resilience (e.g., greater acceptance, re-setting expectations, active coping, addressing mental health) and risk (e.g., lack of information, stigma, isolation, negative healthcare experiences). CONCLUSION: Results suggest the need for longer follow-up of youth with JFM as they transition to adulthood with multidisciplinary care and more attention to education about JFM and associated symptoms such as fatigue, as well as ongoing support for coping and mental health needs. A holistic approach to care during the transition years could be beneficial to minimize impact of JFM on long-term functioning.

End-of-Life Characteristics Associated With Short Hospice Length of Stay for Patients With Solid Tumors Enrolled in Phase I Clinical Trials.

BACKGROUND: Patients participating in phase I trials represent a population with advanced cancer and symptoms, with quality-of-life implications arising from both disease and treatment. Transitions to end-of-life care for these patients have received little attention. Good empirical data are needed to better understand the role of advance care planning and palliative care during phase I trial transitions. We investigated how physician-patient communication at the time of disease progression, patient characteristics, and patterns of care were associated with end-of-life care. METHODS: We conducted a retrospective chart review of all patients with solid tumors enrolled in phase I trials at a comprehensive cancer center from January 2015 to December 2017. We captured physician-patient communication during disease progression. Among patients who died, we assessed palliative care referral, advance care planning, place of death, healthcare use in the final month of life, hospice enrollment, and hospice length of stay (LOS). Factors independently associated with a short hospice LOS (defined as ≤3 days) were estimated from a multivariable model building approach. RESULTS: Among 207 participants enrolled in phase I intervention studies at Johns Hopkins Hospital, the median age was 61 years (range, 31-91 years), 48% were women, 21% were members of racial minority groups, and 41.5% were referred from an outside institution. At the time of disease progression, 53% had goals of care documented, 47% were previously referred to palliative care, and 41% discussed hospice with their oncologist. A total of 82% of decedents died within 1 year of study enrollment, and 85% enrolled in hospice. Among the 147 participants who enrolled in hospice, 22 (15%) had a short LOS (≤3 days). Factors independently associated with an increased risk of short hospice LOS in the multivariable model included age >65 years (odds ratio [OR], 1.12; 95% CI, 1.01-1.24; P=.04), whereas remaining at the same institution (OR, 0.72; 95% CI, 0.65-0.80; P<.001) and referral to palliative care before progression (OR, 0.83; 95% CI, 0.75-0.92; P<.001) were associated with a decreased risk of short hospice LOS. CONCLUSIONS: Reported data support the benefit of palliative care for patients in phase I trials and the risks associated with healthcare transitions for all patients, particularly older adults, regardless of care received. Leaving a clinical trial is a time when clear communication is paramount. Phase I studies will continue to be vital in advancing cancer treatment. It is equally important to advance the support provided to patients who transition off these trials.

Transitional care of biliary atresia.

Worldwide native liver survival (NLS) for young adults (>20 years) with biliary atresia varies between 14% and 44% with the majority of patients developing complications in adulthood. Cholangitis and portal hypertension with variceal bleeding are the most common complications and development of these during adolescence associated with the need for liver transplantation during adulthood. Adult listing criteria, typically developed on the background of adult liver disease might not be applicable to this patient population and leads to longer waiting time and risk of deterioration of their medical condition. Current data on growth and puberty in young people with biliary atresia surviving with native liver are rare. Pregnancy has been associated with serious complications in particular for those patients with advanced liver disease and, close follow up by specialist teams recommended. The long-term effect of having a chronic liver disease such as biliary atresia on neuro-cognitive and pubertal development has not been sufficiently explored to date despite reports of a high prevalence of additional educational needs in this cohort. In addition, patients and parents report inferior health related quality of life compared to healthy peers and similar to that of children post liver transplantation. Moving on from paediatric to adult services is challenging for young people and their parents and adult health professionals might not be familiar with the condition and complications. Young people deserve to be looked after by specialist, multidisciplinary services who provide holistic care and address their psychosocial needs in addition to the medical needs.

Perspectives from primary health care providers on their roles for supporting adolescents and young adults transitioning from pediatric services.

BACKGROUND: Transitioning from pediatric care to adult-oriented care at age 18 (the age of transfer in most countries and jurisdictions) is a complex process for adolescents and young adults affected by chronic physical health and/or mental health conditions. The role of primary health care (PHC) providers for this population is poorly understood. Perspectives from these providers, such as family physicians and other members of the primary care team, have not been explored in depth. METHODS: A total of 18 participants (e.g., family physicians, social workers, nurses) were recruited from 6 Primary Care Networks in Calgary, Alberta, Canada. Semi-structured individual interviews were conducted, and transcribed verbatim. A qualitative description approach was used to analyze the data, and included thematic analysis. RESULTS: Five distinct, yet overlapping, roles of primary health care providers for adolescents and young adults transitioning to adult care resulted from our analysis: (1) being the "common thread" (continuous accessible care); (2) caring for the "whole patient" (comprehensive care); (3) "knowing families" (family-partnered care); (4) "empowering" adolescents and young adults to develop "personal responsibility" (developmentally-appropriate care); and (5) "quarterbacking" care (coordination of specialist and/or community-based care). Participants identified potential benefits of these roles for adolescents and young adults transitioning to adult care, and barriers in practice (e.g., lack of time, having minimal involvement in pediatric care). CONCLUSIONS: Input from family physicians, who follow their patients across the lifespan and provide the majority of primary care in Canada, are critical for informing and refining recommended transition practices. Our findings provide insights, from PHC providers themselves, to bolster the rationale for primary care involvement during transitions from pediatric specialty and community-based care for AYAs. Solutions to overcome barriers for integrating primary care and specialty care for adolescents and young adults need to be identified, and tested, with input from key stakeholders.

How Do the Challenges of Emerging Adulthood Inform our Understanding of Diabetes Distress? An Integrative Review.

PURPOSE OF REVIEW: Emerging adulthood (ages 18-29) presents many emotional, social, and developmental challenges that can contribute to an increased sense of burden when managing type 1 diabetes (T1D). Diabetes distress (DD) is the concept that captures the emotional burden, frustrations, and worries resulting from living with T1D. This integrative review sets out to examine the impact of developmental context by answering this question: How do the challenges of emerging adulthood inform our understanding of DD? RECENT FINDINGS: DD is highly prevalent in emerging adults and occurs at higher rates than in other age groups. Qualitative studies reveal that DD is embedded within the developmental challenges specific to living with T1D during this stage. Quantitative studies reveal the prevalence and correlates of DD in this age group, and qualitative studies augment these findings by capturing the scope and complexity of the emotional burden of living with T1D as an emerging adult.