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Improving transition for adolescents with special health care needs from pediatric to adult-centered health care: Introduction

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... Transition is defined as "a process of organized and coordinated change of adolescents and young adults with a chronic medical condition from a pediatric system of care to the adult system of care" (3). Transition is a process, whereas 'transfer' is the actual moment of the first appointment at adult care. ...
... Murray et al (11) examined case law regarding particular situations where some crisis or lack of services led to a legal challenge. Such case law is beginning to set important legal precedents in these countries in support of the rights of people with PWS to have services in the community according to their needs, 3. Be aware that this is the age in a person's life when psychiatric illness may develop for the first time. ...
... Growth hormone (GH) treatment is started during the first months of life generally around 6 months after performing a polysomnography. A complete endocrine evaluation is done before the start of GH treatment and regularly repeated during follow-up (1)(2)(3)(4)(5)(6)(7)(8)(9)(10)(11)(12)(13)(14). Hyperphagia rarely starts before 6 years when adequate follow-up and support are set up. ...
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Prader-Willi syndrome (PWS), the most common form of syndromic obesity, is a complex neurodevelopmental genetic disorder including obesity with hyperphagia, endocrine and metabolic disorders and also psychiatric disorders. The most frequent endocrine disturbances include hypogonadism and growth hormone (GH) deficiency. Hypothyroidism and central adrenal insufficiency can also be observed but are less frequent. The transition of patients with PWS from adolescence to adult life is challenging because of multiple comorbidities and complex disability. Patients and caregivers face psychological, medical and social issues. This period of profound changes is thus prone to disruptions, the main risks being the worsening of the medical situation and loss to follow-up of the patients. Medical care may be poorly adapted to the needs of patients because of a lack of knowledge concerning the syndrome and also lack of the necessary specific skills. A multidisciplinary panel composed of several experts in PWS met in November 2021 during an endo-ERN webinar. They presented complementary aspects of PWS from the perspective of the transition including psychiatric, pediatrics and adult endocrinological and parent's and patient's point of view and shed light on the best way to approach this pivotal period.
... The READYorNot ™ Brain-Based Disabilities Study was a project in the CHILD-BRIGHT national research network funded by the Canadian Institutes of Health Research's Strategy for Patient-Oriented Research to improve outcomes for children with brain-based developmental disabilities and their families [21]. Transition from pediatric to adult healthcare systems is a critical milestone for a growing population of youth with lifelong conditions [22,23]. The goal of healthcare transition is to maximize lifelong functioning and potential through the provision of uninterrupted healthcare services as individuals move from adolescence to adulthood [22,23]. ...
... Transition from pediatric to adult healthcare systems is a critical milestone for a growing population of youth with lifelong conditions [22,23]. The goal of healthcare transition is to maximize lifelong functioning and potential through the provision of uninterrupted healthcare services as individuals move from adolescence to adulthood [22,23]. In the CHILD-BRIGHT READYorNot ™ BBD project, we aimed to support this goal by developing an App to promote education, empowerment, and navigation to help youth manage their healthcare. ...
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Background While patient and family engagement in research has become a widespread practice, meaningful and authentic engagement remains a challenge. In the READYorNot™ Brain-Based Disabilities Study, we developed the MyREADY Transition™ Brain-Based Disabilities App to promote education, empowerment, and navigation for the transition from pediatric to adult care among youth with brain-based disabilities, aged 15–17 years old. Our research team created a Patient and Family Advisory Council (PFAC) to engage adolescents, young adults, and parent caregivers as partners throughout our multi-year and multi-stage project. Main body This commentary, initiated and co-authored by members of our PFAC, researchers, staff, and a trainee, describes how we corrected the course of our partnership in response to critical feedback from partners. We begin by highlighting an email testimonial from a young adult PFAC member, which constituted a “critical turning point,” that unveiled feelings of unclear expectations, lack of appreciation, and imbalanced relationships among PFAC members. As a team, we reflected on our partnership experiences and reviewed documentation of PFAC activities. This process allowed us to set three intentions to create a collective goal of authentic and meaningful engagement and to chart the course to get us there: (1) offering clarity and flexibility around participation; (2) valuing and acknowledging partners and their contributions; and (3) providing choice and leveraging individual interests and strengths. Our key recommendations include: (1) charting the course with a plan to guide our work; (2) learning the ropes by developing capacity for patient-oriented research; (3) all hands on deck by building a community of engagement; and (4) making course corrections and being prepared to weather the storms by remaining open to reflection, re-evaluation, and adjustment as necessary. Conclusions We share key recommendations and lessons learned from our experiences alongside examples from the literature to offer guidance for multi-stage research projects partnering with adolescents, young adults, and family partners. We hope that by sharing challenges and lessons learned, we can help advance patient and family engagement in research.
... As this definition emphasizes, families play a pivotal role in HCT. Exploring the dynamic processes that transpire within family systems during HCT can provide insight into improving child-and family-centered (CFCC) support for transitioning youth (Blum, 2002;Committee On Hospital Care Institute For Patient-and Family-Centered Care, 2012;Coyne et al., 2018;Ford et al., 2018;Foster et al., 2023;Ladores, 2015;van Staa et al., 2015). ...
... Youth with chronic health conditions often require their care to be transitioned from pediatric to adult services. 1 Transition is associated with adverse health outcomes, including disengagement from care and disease complications. [2][3][4][5][6][7][8] Additionally, youth with chronic conditions experience inequities accessing healthcare services compared with their peers, such as disability-related accessibility issues. ...
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CONTEXT Youth with chronic health conditions experience challenges during their transition to adult care. Those with marginalized identities likely experience further disparities in care as they navigate structural barriers throughout transition. OBJECTIVES This scoping review aims to identify the social and structural drivers of health (SSDOH) associated with outcomes for youth transitioning to adult care, particularly those who experience structural marginalization, including Black, Indigenous, and 2-spirit, lesbian, gay, bisexual, transgender, queer or questioning, and others youth. DATA SOURCES Medline, Embase, CINAHL, and PsycINFO were searched from earliest available date to May 2022. STUDY SELECTION Two reviewers screened titles and abstracts, followed by full-text. Disagreements were resolved by a third reviewer. Primary research studying the association between SSDOH and transition outcomes were included. DATA EXTRACTION SSDOH were subcategorized as social drivers, structural drivers, and demographic characteristics. Transition outcomes were classified into themes. Associations between SSDOH and outcomes were assessed according to their statistical significance and were categorized into significant (P < .05), nonsignificant (P > .05), and unclear significance. RESULTS 101 studies were included, identifying 12 social drivers (childhood environment, income, education, employment, health literacy, insurance, geographic location, language, immigration, food security, psychosocial stressors, and stigma) and 5 demographic characteristics (race and ethnicity, gender, illness type, illness severity, and comorbidity). No structural drivers were studied. Gender was significantly associated with communication, quality of life, transfer satisfaction, transfer completion, and transfer timing, and race and ethnicity with appointment keeping and transfer completion. LIMITATIONS Studies were heterogeneous and a meta-analysis was not possible. CONCLUSIONS Gender and race and ethnicity are associated with inequities in transition outcomes. Understanding these associations is crucial in informing transition interventions and mitigating health inequities.
... The transition process is defined as the deliberate and scheduled handover of adolescents and young adults with a chronic medical condition from a paediatric-to an adult-oriented healthcare system [1] . There are major differences between paediatric and adult care system, since the first one is predominantly familycentred whereas adult care often claims patient independence [2] . ...
... Transition in care is defined as the purposeful and planned movement of adolescents and young adults (AYAs) with a chronic medical condition to adult-oriented healthcare systems/care providers (70,71). Children in Canada transition from paediatric to adult healthcare services between the ages of 14-18, with ultimate transfer to adult care around the time the child turns 18 years. ...
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Rates of inflammatory bowel disease (IBD) in Canadian children and adolescents are among the highest in the world, and the incidence is rising most rapidly in children under five years of age. These young children may have either a typical form of IBD with multi-factorial aetiology, or they may have a monogenic form. Despite the growing number of children in Canada living with this important chronic disease, there are few available medical therapies approved by Health Canada due to the omission of children from most clinical trials of newly developed biologics. As a result, off-label use of medications is common, and physicians have learned to use existing therapies more effectively. In addition, most Canadian children are treated in multidisciplinary, specialty clinics by physicians with extra training or experience in IBD, as well as specialist nurses, dietitians, mental health care providers and other allied health professionals. This specialized clinic approach has facilitated cutting edge research, led by Canadian clinicians and scientists, to understand the causes of IBD, the optimal use of therapies, and the best ways to treat children from a biopsychosocial perspective. Canadians are engaged in work to understand the monogenic causes of IBD; the interaction between genes, the environment, and the microbiome; and how to address the mental health concerns and medical needs of adolescents and young adults transitioning from paediatric to adult care.
... In 2002, a joint consensus statement from the American Academy of Pediatrics (AAP), the American Academy of Family Physicians (AAFP), and the American College of Physicians-American Society of Internal Medicine (ACPASIM) stated the importance of supporting and facilitating the transition of adolescents with special healthcare needs into the adult healthcare setting. 52 Furthermore, in 2011 the AAP published a clinical report outlining the six sequential core elements 53 : 1) discussion of transition policy; 2) transition tracking and monitoring; 3) transition readiness and/or orientation to adult practice; 4) transition planning; 5) transfer of care; and 6) transition completion and ongoing care with the adult healthcare team. In addition, the 2011 adult 2 and 2017 pediatric 1 Canadian Thoracic Society guideline recommendations for LTMV transition included early planning with disease-specific education and VAI preparation, identification of a family physician, joint pediatric-adult transition clinic visits, and awareness of the changes in pediatric to adult funding of homecare support services. ...
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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.
... Clinical pharmacists provide vital education around the management of the complex medical regimens that transplant patients use. Transition of care refers to the purposeful and planned process of moving an adolescent with chronic medical condition from pediatric to adult care services which should begin in adolescence and continue into early adulthood [13], while transfer is a one-time event during this process when the responsibility for care formally shifts from a pediatric to an adult team. The International Society of Nephrology and the International Pediatric Nephrology Association published a consensus statement in 2011, outlining the approach to transitioning pediatric patients with kidney diseases to adult services [8]. ...
... Transition refers to the purposeful and planned process of moving from paediatric to adult care services beginning in adolescence and continuing into early adulthood (1). Transfer represents a one-time event during the process of transition when the responsibility for care shifts officially from a paediatric to an adult care provider or team. ...
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Youth with complex health care needs, defined as those requiring specialized health care and services for physical, developmental, and/or mental health conditions, are often cared for by paediatricians and paediatric specialists. In Canada, the age at which provincial/territorial funders mandate the transfer of paediatric care to adult services varies, ranging between 16 and 19 years. The current configuration of distinct paediatric and adult care service boundaries is fragmentary, raising barriers to continuity of care during an already vulnerable developmental period. For youth, the lack of care integration across sectors can negatively impact health engagement and jeopardize health outcomes into adulthood. To address these barriers and improve transition outcomes, paediatric and adult care providers, as well as family physicians and other community partners, must collaborate in meaningful ways to develop system-based strategies that streamline and safeguard care for youth transitioning to adult services across tertiary, community, and primary care settings. Flexible age cut-offs for transfer to adult care are recommended, along with considering each youth’s developmental stage and capacity as well as patient and family needs and circumstances. Specialized training and education in transitional care issues are needed to build capacity and ensure that health care providers across diverse disciplines and settings are better equipped to accept and care for young people with complex health care needs.
... Transition from pediatric to adult care in adolescents and young adults with IBD Transition in care is defined as the "purposeful and planned movement of adolescents and young adults with a chronic medical condition to adult-oriented healthcare systems/care providers" [1]. Children in Canada transition from pediatric to adult healthcare services between the ages of 14 and 18, with ultimate transfer to adult care by age 18. ...
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Background Transition in care is defined as the “purposeful and planned movement of adolescents and young adults with a chronic medical condition from pediatric to adult-oriented healthcare systems/care providers.” Currently, there are no Level 1 evidence-based interventions to improve the care of transitioning adolescents and young adults (AYAs) with inflammatory bowel disease (IBD). The development of a transition program using a biopsychosocial approach will improve the standards for healthcare delivery to transitioning IBD patients. This is a protocol for a structured randomized controlled trial (RCT) to assess the clinical and implementation effectiveness of a multimodal intervention focused on improving patient function, transition readiness and outcomes among AYA patients with IBD being cared for at pediatric centers in Canada. Methods This multi-center RCT is a type 1 hybrid effectiveness-implementation trial to evaluate effectiveness of the intervention and how it can be implemented more widely after the trial. We will include patients aged 16.0–17.5 years. The intervention program consists of 4 core components: (1) individualized assessment, (2) transition navigator, (3) virtual patient skills-building with a focus on building resilience, self-management and self-efficacy, and (4) a virtual structured education program. The control group will undergo standard-of-care defined by each participating center. The primary outcome will be the IBD Disability Index, a validated measure to assess patient functioning. Secondary outcomes include transition readiness and success, anxiety and depression scales, and health service utilization rates. Additionally, we will measure implementation outcomes and related barriers and facilitators for the intervention program. Discussion The type 1 hybrid effectiveness-implementation design will allow for the development of a feasible, sustainable, and acceptable final intervention model. The intervention will consist of modules that can be accessed in an online, virtual platform. The implementation will allow centralization of interventions and funding in order to minimize the impact on local clinical practice or hospital resources. The authors anticipate that the main study limitation will relate to study subjects not completely adhering to every component of the intervention, which will be evaluated and addressed using the implementation science approach. Trial registration NCT05221281. Registry: ClinicalTrials.gov. Date of registration: February 2, 2022. https://clinicaltrials.gov/ct2/show/NCT05221281.
... Identification of contemporaries who have an interest in responsibility of young adults, a social worker who can supervise the transition, a meeting between the existing and new health-care team, follow-up phone calls and psychological backing to the patient during the transition allows smooth transition of an adolescent to adult care. 66 However, one of the limitations of this review is that little information on whether an individual patient achieved his/her target is available as most studies describe the mean or median HbA1c values of the population. Moreover, studies describing variations in control between socioeconomic classes are scarce and may be a scope for future studies. ...
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Diabetes is the third most prevalent severe chronic disease of youth. Management of any chronic condition like type-1 diabetes (T1D) during adolescence, a time of rapid growth and physiological changes accompanied by important individuation and socialization processes, constitutes a major challenge for the youth, their family and the health-care team. The increasing prevalence of T1D in the adolescent age group and deteriorating glycaemic control from childhood to adolescence and youth, as well as the secular trend of worsening glycaemic control in youth and young adults with T1D, are a matter of real concern. Lack of monitoring, insufficient self-control, psychosocial factors, lack of family support and parental supervision, inadequate adherence to treatment, pubertal increase in insulin resistance and incompetent transition from paediatric to adult care are likely causes of deteriorating glycaemic control in youth. Efforts to improve insulin sensitivity by using pharmacological agents such as metformin are insufficient in resolving this problem. Interventions such as structured intervention, motivational interviews, development of youth friendly services and organization of diabetes camps for peer support can improve adherence in these individuals. Innovative technologies such as continuous subcutaneous insulin infusion and continuous glucose monitoring, comprehensive multidisciplinary teams with effective communication, parental support and supervision with planned transition from paediatric to adult care will not only reduce the risk of micro- and macrovascular complications in young adults with T1D but will also cause significant improvement in their quality of life.
... The transition from pediatric to adult care is categorized as the purposeful and planned process that involves the movement from childcentred to adult-oriented care systems (Blum, 2002). This transition process can be challenging for youth with complex care needs (CCN). ...
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With advancements in modern medicine, an increasing number of youth with complex care needs (CCN) survive into adulthood. As service demands increase for this group, challenges exist on how to best facilitate meeting their needs as they transition from pediatric to adult health care. There is growing evidence of young adults describing their transition experiences and suggesting improvements to the design and delivery of these services. By synthesizing the existing literature, an increased understanding can be gained about the recommendations of those who have recently transitioned from pediatric to adult health care, thus improving both patient outcomes and experiences. This scoping review aims to comprehensively map recommendations on how to improve the transition from pediatric to adult health care based on the experiences of young adults (aged 18-30) with CCN. This study protocol outlines a scoping review of peer-reviewed and grey literature, following the Joanna Briggs Institute (JBI) scoping review methodology. Literature will be identified using a comprehensive search strategy developed by a JBI-trained librarian. Papers involving primary studies with recommendations of young adults recently transitioned from pediatric to adult care will be included. Search strategy results will be screened by two independent reviewers and included studies will have duplicates removed and charted according to a modified PRISMA flow diagram. Working with the Centre for Research in Integrated Care at the University of New Brunswick, knowledge translation activities will involve targeted communication channels to a variety of knowledge users, such as researchers, clinicians, and policymakers.
... Youth with a neurodisability may also experience challenges during health care transition when they need to learn how to navigate adult health care services [3]. Health care transition for youth is defined as the "purposeful, planned movement of adolescents with chronic medical conditions from child-centred to adult-oriented health care" [4]. This experience can be described as 'falling off a cliff', where youth are often unprepared for this transition when their familiar pediatric services abruptly end [5]. ...
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Background Children and youth with neurodisabilities may experience different challenges during their transition to adulthood, such as pursuing postsecondary education, finding employment, and navigating a new adult health care system. Families, including siblings, have an important role in the process for when youth with neurodisabilities are transitioning to adulthood. Siblings are in a unique position, where they can have different roles such as a friend, mentor, or caregiver. Siblings can offer various supports to their brother or sister with a neurodisability, but they require knowledge and skills for these different supporting roles. Currently, there are limited programs available for siblings to learn how to support their brother or sister with a neurodisability during transition. A first step to develop these sibling support programs is to understand the experiences of siblings of youth with a neurodisability. The purpose of this report is to describe a protocol of a qualitative case study aimed at examining the experiences of siblings including their roles and responsibilities to their brother or sister with a neurodisability during health care transition. Methods An exploratory single case study design will be used. An integrated knowledge translation approach to conducting this study will be used by partnering with the Sibling Youth Advisory Council comprised of siblings who have a brother or sister with a disability throughout all study phases. Participants will include siblings (ages 14–40 years old) with a brother or sister (ages 14–21 years old) with a neurodisability in Ontario, Canada. Semi-structured interviews will be conducted, that will be augmented by photo elicitation and drawings of family tree diagrams. Data will be analyzed using reflexive thematic analysis. Discussion Findings from this study will be shared with siblings, families, researchers, and the broader community. It is important to understand the roles and responsibilities that siblings are choosing to have to support their brother or sister with a neurodisability, and how these roles may change over time as their sibling is growing up and transitions to adulthood. Siblings may require knowledge and skills in these roles, and an understanding about siblings’ experiences in certain roles can help to inform the development of a resource to support siblings during health care transition.
... Transition has been defined by one investigator as "the purposeful, planned movement of adolescents with chronic medical conditions from child-centered to adult-oriented health care." 24 Transition usually occurs between the ages 17 and 21, depending on the health care system. Components of transition programs necessary for a successful transition in other complex diseases have been identified. ...
Article
The natural progression of DMD pathophysiology has changed with the introduction of therapies for downstream pathologic pathways and will continue to evolve with the development of therapies that target function and expression of dystrophin. However, the respiratory and sleep needs in this population are largely predictable over the lifespan, and are best handled in an anticipatory manner. The profile of SRBD changes through childhood and adolescence due to progressive respiratory pathology. Boys treated with systemic steroids develop increased rates of OSA, and progression of chest wall weakness leads to hypoventilation during sleep before daytime symptoms and may only be identified on polysomnogram. Nighttime respiratory support should generally begin with bilevel NIPPV instead of CPAP, and oxygen should never be used alone, as this can obscure and worsen hypoventilation. Although less commonly recognized than SRBD, boys and men with DMD are at increased risk for disorders of initiation and maintenance of sleep, caused by SRBD, anxiety/depression, autonomic dysregulation, and as a side effect from commonly prescribed medications.
... Care for AYA CCS are widely disparate across the world [12][13][14][15] and providers lack the knowledge, skills, and institutional resources to monitor patients through this critical transition [16][17][18]. The Society for Adolescent Medicine and several professional societies in pediatrics, internal medicine and family medicine have operationalized the key principles for successful transitions to adult care [19][20][21]. Despite all of this, most CCS do not effectively transition to adultcentered care for the necessary screening tests and late effects counselling [3,12,16,22]. ...
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Background: Adolescent and young adult (AYA) childhood cancer survivors (CCS) should be empowered to continue their survivor-focused care as they transition into adult medicine. However, the majority of AYA-aged survivors become lost to follow up around the age of typical transition to adulthood. The purpose of this study was to identify, from the patient's perspective, key factors that facilitate successful transitions to adult-centered survivorship care. Methods: A qualitative study was conducted with AYA CCS (n = 29) from the survivorship clinic of a single institution as key informants. Data were collected through a series of structured phone interviews and subjected to thematic content analysis. Results: Four major themes with multiple subthemes were identified: (1) transition practices need to be flexible and individually tailored; (2) effective communication is critical to a successful transition; (3) continuity in providers is needed during the transition; and (4) comprehensive care means care that also addresses psycho-social well-being. Conclusions: From the perspective of AYA CCS, the ideal model of transitional survivorship care could include a patient navigator who promotes provider flexibility, consistent communication, and pro-active comprehensive care that encompasses both medical and psycho-social well-being. Models of care for CCS should be built to provide, or seamlessly facilitate, continuous survivor-focused care across the age continuum. A longitudinal relationship with a survivor-focused provider can help promote the values that CCS' report as important in transitioning care from pediatric- to adult-centered care.
... Currently there are different models for transition of care that include: disease-based models, care coordination models and adolescent medicine programs based on medical needs [173,174]. The selection of one model over another depends largely on the characteristics of the setting in which the patient has been receiving care and where the patient is being transferred to, as some children's hospitals and paediatric care facilities are not affiliated with or close to adult facilities. ...
... Transition is "the purposeful, planned movement of adolescents with chronic medical conditions from child-centered to adult-oriented healthcare" [1], with the goal of providing greater patient independence and autonomy [2]. Transitioning a child with a chronic condition requires extensive, long-term coordination and planning [3]. ...
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Caregivers of individuals with intellectual and developmental disabilities and epilepsy such as Dravet syndrome (DS) must navigate a complex web of state and community services through the transition from child-centered to adult-oriented healthcare. This study examined barriers to successful transition from the caregivers' perspective. Primary caregivers of teenagers or adults with DS who had contemplated or completed transition to adult care were eligible. A three-week, asynchronous, web-based focus group was conducted on Facebook. Data were analyzed in an iterative process based on a Grounded Theory approach. Participants reviewed findings for accuracy. Transition success was defined by how well it ensured adequate care for the child when caregivers became unable to provide it. Existing transition programs were described as “not for our kids.” All caregivers reported that transition programs began too late. Challenges to identifying suitable providers were formidable, with 71% of adult patients still being seen by pediatric neurologists. Many adult physicians lacked a general knowledge of DS, yet caregivers perceived that adult physicians were unwilling to listen to caregivers, and few were comfortable accommodating patients with intellectual disabilities and challenging behaviors. Community programs often excluded patients with DS, and rural healthcare disparities created additional barriers. Analysis produced recommendations for improving the transition process including the creation of a certified Transition Navigator position in the clinical setting. The limitations of this focus group analysis include possible selection bias, but our study identified key issues and pathways to improve the transition process for patients with DS and their caregivers.
... Thinking of a renovation of the Italian PKU care offering will mean paying particular attention to the transition phase (i.e. adolescence) that we presume to be a crucial and bridging phase [29]. ...
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Background Phenylketonuria (PKU) is a hereditary metabolic disease that can be diagnosed and successfully treated from birth with a lifelong phenylalanine-restricted dietary regimen. However, optimal adherence to diet remains an issue and often progressively decreases after adolescence. The study aimed to explore the experience of adults living with PKU in order to gain insights related to their adherence to diet and engagement in managing their condition. Methods The study adopted a qualitative methodology in sessions that combined specifically designed co-creation exercises with focus group discussion. Adults with early-treated classic PKU were enrolled for 2 different sessions - one for adherent and one for non-adherent patients. The verbatim notes of both sessions and focus group were analyzed using content analysis. Results Twelve adherent and nine non-adherent adults with PKU participated. Besides the behavioral dictates of following a strict diet, adherent adults reported a positive mental approach and organizational rigor; they seemed aware of the consequences of high-phenylalanine levels, reporting that it can affect mood and consequently social interactions which they value highly. In the non-adherent group, the individuals seemed to not fully accept their disease: they were aware of the consequences of non-adherence in children but not in adults, they felt the management of PKU was an individual burden and they experienced a feeling of ‘diversity’ in the social context (related to eating) that caused emotional distress. PKU seemed a very influential element of the identity both for adherent and non-adherent adults, but with different consequences for the two groups. Finally, all participants reported the desire to be assisted in a healthcare setting dedicated to adults. Conclusions The findings expand the understanding of the psychological experience of adult patients with PKU in relation to their disease and its dietary requirements, highlighting specific factors that might drive tailored educational or psychological intervention to improve adherence and engagement in the care process.
... Transition may be defined as the "purposeful, planned movement of adolescents with chronic medical conditions from childcentred to adult-oriented health care" (69). However, in a number of chronic conditions, including GH disorders, a large proportion of patients terminate their therapy during their transition from paediatric to adolescent/young adult care (70). ...
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Several studies have shown that adherence to growth hormone therapy (GHT) is not optimal. There are several reasons why patients may not fully adhere to their treatment regimen and this may have implications on treatment success, patient outcomes and healthcare spending and resourcing. A change in healthcare practices, from a physician paternalistic to a more patient autonomous approach to healthcare, has encouraged a greater onus on a shared decision-making (SDM) process whereby patients are actively encouraged to participate in their own healthcare decisions. There is growing evidence to suggest that SDM may facilitate patient adherence to GHT. Improved adherence to therapy in this way may consequently positively impact treatment outcomes for patients. Whilst SDM is widely regarded as a healthcare imperative, there is little guidance on how it should be best implemented. Despite this, there are many opportunities for the implementation of SDM during the treatment journey of a patient with a GH-related disorder. Barriers to the successful practice of SDM within the clinic may include poor patient education surrounding their condition and treatment options, limited healthcare professional time, lack of support from clinics to use SDM, and healthcare resourcing restrictions. Here we discuss the opportunities for the implementation of SDM and the barriers that challenge its effective use within the clinic. We also review some of the potential solutions to overcome these challenges that may prove key to effective patient participation in treatment decisions. Encouraging a sense of empowerment for patients will ultimately enhance treatment adherence and improve clinical outcomes in GHT.
... Although we were unable to find any studies specifically addressing this issue for children on home mechanical ventilation (HMV), there is a significant literature dealing with transition of care in to adulthood for many other chronic childhood illnesses. [1][2][3][4][5][6][7][8][9][10] Position statements from the Canadian Paediatric Society 8 and American Academy of Paediatrics, 9 although not specifically directed towards HMV, do have sufficient commonality to inform the care of patients on HMV. Most of the literature in this area consists of qualitative, observational studies and consensus statements, with relatively little objective evidence with respect to effectiveness of differing models of transition. ...
... There were no studies devoted to transition of patients with both comorbid ADHD and epilepsy. But various guidelines for transition of care for adolescents with special needs exist 84 (Table S8). ...
Article
Attention‐deficit/hyperactivity disorder (ADHD) is a common and challenging comorbidity affecting many children with epilepsy. A working group under the International League Against Epilepsy (ILAE) Pediatric Commission identified key questions on the identification and management of ADHD in children with epilepsy. Systematic reviews of the evidence to support approaches to these questions were collated and graded using criteria from the American Academy of Neurology Practice Parameter. Preferred Reporting Items for Systematic Reviews and Meta‐Analyses (PRISMA) requirements were followed, with PROSPERO registration (CRD42018094617). No increased risk of ADHD in boys with epilepsy compared to girls with epilepsy was found (Level A). Valproate use in pregnancy is associated with inattentiveness and hyperactivity in offspring (1 class I study), and children with intellectual and developmental disabilities are at increased risk of ADHD (Level A). Impact of early seizure onset on development of ADHD was unclear (Level U), but more evident with poor seizure control (Level B). ADHD screening should be performed from 6 years of age, or at diagnosis, and repeated annually (Level U) and reevaluated after change of antiepileptic drug (AED) (Level U). Diagnosis should involve health practitioners with expert training in ADHD (Level U). Use of the Strength and Difficulties Questionnaire screening tool is supported (Level B). Formal cognitive testing is strongly recommended in children with epilepsy who are struggling at school (Level U). Behavioral problems are more likely with polytherapy than monotherapy (Level C). Valproate can exacerbate attentional issues in children with childhood absence epilepsy (Level A). Methylphenidate is tolerated and effective in children with epilepsy (Level B). Limited evidence supports that atomoxetine is tolerated (Level C). Multidisciplinary involvement in transition and adult ADHD clinics is essential (Level U). In conclusion, although recommendations could be proposed for some of the study questions, this systematic review highlighted the need for more comprehensive and targeted large‐population prospective studies.
... Transition period is challenging for both adolescents with T1D and medical providers. It's defined as the "purposeful, planned movement of adolescents and young adults with chronic physical and medical conditions from child-centred to adult-oriented health care systems" [18]. ...
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Aims: Type 1 diabetes is increasing in children leading more T1D young adults to adult healthcare settings. This change is experienced as a tear and results in a disengagement from specialist services. This study reports on an implementation of an effective and pioneering program of transition in North Africa. Methods: A total of 65 teenagers with T1D were recruited for a structured program of transition. They attend transitional meetings involving both pediatric and adult team and were, when ready, welcomed in specialized consultations for adolescents with a special « passport ». Here we study their characteristics before and after structured transition and the benefit of this program. Results: 9 transition meetings took place (September 2012-December 2017). Mean age was 16.5 years. Mean age at onset of T1D was 7.5 years with average pediatric follow-up of 9 years.72% of young adults felt satisfied. After the transition meeting, 74% of patients wished to join directly adult unit. They were followed there for 28.4 ± 16.2 months. The glycaemic control improved significantly with a decrease in HbA1C of 0.93 ± 1.69% the first year of follow-up and the number of young adults achieving a HbA1C < 7.5% increased by 8%. Conclusion: This program was beneficial for 75% of patients who demonstrated an improvement in their metabolic control the year following transition to adult care service. To our knowledge, this study is the first one in North Africa to report on the outcome of a structured transition program from pediatric to adult diabetes care.
... Adolescents and young adults (AYAs) are a group with health care needs which are separate from both adult medicine and pediatrics. Patients in this age group present unique and significant physical, psychological, and cognitive challenges through hospitalization and beyond, which have often been overlooked, particularly in the fields of hematology and oncology [1][2][3][4][5]. AYAs with cancer report a decrease in health-related quality of life (HRQoL), regardless of other demographic factors such as gender, age, or ethnicity [6,7] and struggle with long-term complications in the physical, psychosocial, economic, and academic domains as a consequence of their disease and recovery process [8][9][10]. ...
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Background: Adolescents and young adults with cancer face significant challenges during the course of their medical treatment and recovery from illness. Many adolescents and young adults struggle with long-term complications in the physical, psychosocial, economic, and academic domains. Mobile health (mHealth) interventions provide an innovative platform for delivering supportive care, particularly through the utilization of apps on smartphones and tablets. To create a successful mHealth intervention for adolescents and young adults, youth input and feedback is essential. The process of cocreation, in which the target app user has a direct role in dictating design and function, was utilized to create the prototype smartphone app for adolescents and young adults with cancer, "Kræftværket." Objective: The objective of this paper is to describe the protocol for the evaluation of the Kræftværket app, a prototype app designed via cocreation, to support and improve health-related quality of life for adolescents and young adults with cancer. Methods: The Kræftværket app has three primary features, (1) a symptom and activity diary, (2) a supportive communication network between app users, and (3) a "one-stop shop" information bank with practical information as well as links to patient organizations and other resources. The app will be evaluated in two phases, a pilot test and an implementation test. In the pilot test, the app will be launched to a test group of 20 adolescents and young adults aged 15 to 29 years, selected for equal representation amongst age group and treatment status. Patients will be allowed to utilize the app over the course of six weeks and will complete a baseline and follow-up European Organization for Research and Treatment of Cancer Quality of Life Questionnaire Core 30 (EORTC QLQ-C30) health-related quality of life inventory. In addition, participant focus group interviews will be conducted according to a semistructured interview guide. Resulting data will be analyzed using thematic analysis. Results and appropriate analysis from both the qualitative and quantitative branches of the pilot test will be discussed amongst the research group, and appropriate changes based on user feedback will be made to the app before the final project phase. In the implementation test, the app will be provided and utilized by a sample of 50 adolescents and young adults aged 15-29 years selected for equal representation amongst gender, age group, diagnosis, and treatment status over the course of 3 months. Participants will be asked to complete a baseline and follow-up EORTC QLQ-C30 HRQoL inventory. Results: Pilot testing is expected to take place in February 2018, and implementation testing is expected to begin May 2018. Conclusions: It is the hope that Kræftværket app will serve as a beneficial and easily utilized product. The process of evaluating the app and its effect on quality of life will address the absence of evidence-based mHealth interventions, and attempt to validate new approaches to benefitting adolescents and young adult oncology patients in the digital world. Registered report identifier: RR1-10.2196/10098.
... Patient age is known to affect transition (Betz, 2004). Measurement of patient activation is particularly important for adolescents with chronic conditions when they are in transition from pediatric medicine to adult medicine, which includes the transfer to a new treatment setting and assumption of responsibility for management of their chronic conditions (Blum, 2002;Blum et al., 1993;Crowley, Wolfe, Lock, & McKee, 2011). An unsuccessful transition due to missing or discontinuous follow-up with a clinical specialist in adult care can lead to increased morbidity and mortality (Busse et al., 2007;Kennedy, Sloman, Douglass, & Sawyer, 2007;Pacaud, Yale, Stephure, Trussell, & Davies, 2005;Singh et al., 2010). ...
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Measuring adolescent patients’ engagement in their health care is especially important in preparing for chronically ill adolescents’ transition into adult care. In this study, we aimed to create an adolescent version of the German language Patient Activation Measure (PAM-13-D) originally tested in in adults and psychometrically test the adapted measure (PAM® 13 for Adolescents). After linguistic and content-related adaptations, the PAM® 13 for Adolescents was tested in a large sample of adolescents with different chronic conditions (N = 586, mean age 17.5 years, SD = 1.4) in 40 health centers. Internal consistency was assessed with Cronbach's alpha and test–retest reliability with Pearson correlation. Convergent and divergent validity were calculated with Pearson correlations between the two IE-4 scales (internal and external Locus of Control) and the PAM® 13 for Adolescents. Known-group validity (type 1 diabetes vs. IBD, higher vs. lower education level) was checked by Mann–Whitney-U-tests. The PAM® 13 for Adolescents showed good test–retest reliability (rtt = .68), internal consistency (α = .79) and demonstrated good validity. The original structure of the PAM 13-D was replicated. Rasch analysis using the partial credit model was used to investigate the operating characteristics of the items. Rasch analysis indicated a sufficient fit of 12 of the 13 items. PAM® 13 for Adolescents is the first instrument measuring patient activation of adolescents with chronic conditions in a broad age range. Patient activation level can be used by clinicians to better plan and structure transition processes.
Article
Transition is the next major hurdle in the field of HIV-infected youth, especially in sub-Saharan Africa. At St Camille Hospital in Ouagadougou, fully informed and compliant patients over 13-years-old were eligible for referral to the adult HIV/AIDS service, after completion of an individualized preparatory process. Transition consisted in at least two consecutive "joined-service" appointments in the respective facilities. We retrospectively compared immunological, clinical, and therapeutical data one year before transition, at transition and one year after transition. Between 2008 and 2019 73 patients (34 females, 39 males) were transitioned. All had been previously in pediatric care for at least 1 year and 66 were on HAART. Matched paired analysis of CD4 counts revealed a modest drop in CD4 cells over time (p < 0.05). Clinical data also showed strong fluctuation between WHO clinical stages over the three time points, with a clear trend towards increased severity especially post transfer. This large retrospective 12-year single-center experience from a Sahel country showed a 95.8% retention rate at one year. It demonstrates how a comprehensive plan, carefully implemented, can provide excellent retention, even in a low-resource setting. However, mild immunological decline was associated with a worrisome clinical deterioration, underlining the importance of assessing the latter after transition.
Article
Over 95% of children with sickle cell disease (SCD) survive into adulthood in the United States. However, early mortality remains a problem, especially in persons between the ages of 18 and 35. One possible explanation for the increased mortality rate in young adults is difficulties in engaging in care during the transition from a heavily contiguous pediatric healthcare model to a more self‐reliant adult healthcare model. The goal of this study was to identify potential facilitators and barriers to a successful transfer in care from the pediatric to adult SCD program before the formation of a formal transition program. This is a retrospective cohort study of transition outcomes for 472 individuals with SCD (all genotypes) treated at the University of Alabama at Birmingham (UAB) sickle cell clinic (aged 18–24). The primary outcome was whether the patient continued care in (any) adult SCD program (defined as being seen at least once in an adult hematology/SCD clinic). One hundred eighty‐eight (45%) transition age patients successfully transferred to adult care. Facilitators to successful transfer in care included being treated at the same hospital for both pediatric and adult programs, having the genotype HbSS, and/or receiving an SCD‐modifying therapy at the time of transition (hydroxyurea and/or red cell transfusion therapy). Of primary interest, many of the patients who failed to transition to an adult clinic were lost to follow‐up prior to 15 years of age. Importantly, these patients who had previously been labeled as “transition failures,” were lost to follow‐up long before the transition age. Early engagement is needed for this population.
Article
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Although transitions between health care systems are common when patients move between jobs or insurers, they are especially difficult to navigate when patients with mental health conditions leave an integrated system, such as the Military Health System (MHS). The authors synthesize evidence from studies of interventions that facilitate transitions between mental health care systems, such as the transition from the MHS to the Veterans Health Administration (VHA). The authors searched multiple research databases, reference-mined bibliographies of existing reviews, and consulted with experts to identify existing evaluations of transition support interventions. Key informants helped identify pertinent populations of interest who are transitioning between health care systems. Seventeen studies evaluating different approaches met inclusion criteria. Studies reported on different outcomes, and few could be combined in aggregated analyses. Analyses showed that care transition interventions can increase outpatient mental health service use, but the overall body of evidence is limited.
Thesis
Pour les jeunes patients diabétiques, il est troublant de passer d'une prise en charge pédiatrique à une médecine pour adultes. Selon les études de Peters et Laffel (2011), 25 à 64% des jeunes patients présentent une rupture complète ou partielle avec le milieu médical au moment de la transition des consultations et pour les patients suivis en consultation adultes après la transition, nous observons un déséquilibre glycémique fréquent. De ce fait, il est important de développer des stratégies particulières de prévention associées à une observance étroite avant et pendant la période de transition. La réussite de la transition des consultations nécessite une coopération active entre les pédiatres et les endocrinologues en y incluant le plus tôt possible une éducation thérapeutique du patient. L'éducation thérapeutique pour ces jeunes adultes, atteints de maladies chroniques, et en l'occurrence dans notre recherche des patients diabétiques, est d'assurer un relais bien organisé vers les consultations adultes. La progression de l'ETP pendant les soins pédiatriques et la continuité vers les consultations adultes définissent la qualité de la transition. Ce passage reste compliqué pour ces jeunes patients diabétiques qui subissent une période de transformation relative à la période de la fin de l'adolescence et nécessitent en même temps des besoins médicaux spécifiques. Notre étude a pour objectif principal de comprendre la rupture lors des suivis médicaux de ces patients concernés par le diabète. La question de recherche est comment préparer et motiver le patient diabétique à continuer son traitement et assurer son suivi médical lors de la transition des consultations ? Nous nous interrogeons sur les pratiques hospitalières lors de la transition des consultations pour le patient, ses proches et leurs ressentis.
Article
Les jeunes qui ont des besoins de santé complexes, définis comme ceux qui nécessitent des soins et services spécialisés en raison d’affections physiques, développementales ou mentales, sont souvent traités par des pédiatres et autres spécialistes en pédiatrie. Au Canada, l’âge auquel les bailleurs de fonds provinciaux et territoriaux exigent le transfert des soins pédiatriques aux soins pour adultes varie entre 16 et 19 ans. La délimitation actuelle entre les services de santé pédiatriques et aux adultes est fragmentaire, ce qui entrave la continuité des soins pendant une période déjà vulnérable du développement. Le peu d’intégration des soins entre les domaines peut nuire à l’engagement des jeunes en matière de santé et compromettre leur santé à l’âge adulte. Pour renverser ces obstacles et améliorer les résultats de la transition, les dispensateurs de soins pédiatriques et de soins aux adultes, de même que les médecins de famille et d’autres partenaires communautaires, doivent collaborer de manière satisfaisante à l’élaboration de stratégies systémiques qui rationalisent et préservent les soins aux jeunes en transition vers des soins aux adultes en milieu tertiaire, communautaire et primaire. Il est recommandé de privilégier des limites d’âge flexibles pour effectuer cette transition vers les soins aux adultes et de tenir compte de la phase de développement et de l’aptitude de chaque jeune, ainsi que des besoins et de la situation de chaque patient et de chaque famille. Une formation et un enseignement spécialisés sur les enjeux liés aux soins de transition s’imposent pour renforcer les capacités et s’assurer que les professionnels de la santé des diverses disciplines et des divers milieux soient mieux outillés pour accepter et traiter les jeunes qui ont des besoins de santé complexes.
Technical Report
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Transitions between health care systems are difficult to navigate when patients with mental health conditions leave an integrated system. The authors synthesize evidence from studies of interventions that facilitate transitions between mental health care systems, such as the transition from the Military Health System to the Veterans Health Administration.
Article
Aim Transition from pediatric to adult care is a critical step in life of emerging adults with type 1 diabetes. We assessed, according to indicators established by panel of experts, clinical, socio-demographic and psychosocial factors in young adults with type 1 diabetes throughout structured transition to investigate the associations, if any, with HbA1c value at time of transition. Methods The “Verona Diabetes Transition Project” started in January 2009: a structured transition program, shared between pediatric and adult clinic, was organized with a multi-disciplinary team. All young adults underwent a semi-structured interview by psychologist, before transition. Minimum age for transition was 18 years. Results 222 (M/F=113/109) young adults moved to adult care from January 2009 to March 2020. The mean time between the last pediatric visit and the first adult visit ranged from 13.6±6.1 months at the beginning of the project to 3.6±11.5 months over the following years. At first adult clinic attendance, females showed higher HbA1c values (70±11 mmol/mol vs 65±7 mmol/mol or 8.57±1.51% vs 8.14±0.98%, p=0.01), higher frequency of disorders of eating behaviors (15.6% vs 0%, p<0.001) and poor diabetes acceptance (23.9% vs 9.7%, p<0.001) than males. Mediation analyses showed a significant mediating role of glucose control 2 years before transition in the relationship between poor diabetes acceptance and glucose control at transition. Conclusions This study demonstrated a delay reduction in establishing care with an adult provider and suggested the potential role of low diabetes acceptance on glycemic control at transition. Further studies are needed to confirm and expand these data.
Article
Purpose To demonstrate the need for developing standardized healthcare transition plans for persons with severe forms of thalassemia as life expectancy continues to improve. Design and methods This study utilized an original questionnaire to explore the factors that determined whether individuals residing in North America transferred their thalassemia care from a pediatric to an adult specialist, and what components they believed should be included in a healthcare transition plan. Results Approximately one-third of respondents remained under the care of a pediatric hematologist, most commonly citing the thalassemia knowledge of the specialist as their reason for not transferring their care. Additionally, this group also reported more thalassemia-related services available at their healthcare facility, better access to flexible hours for blood transfusions and increased satisfaction with their care. Adults with thalassemia recommend enhanced communication between patient and provider and building opportunities for patients to assume the role of self advocate as key components for a healthcare transition plan. Conclusions There is an inconsistency in the transfer-of-care experience of adults with severe forms of thalassemia living in North America. Development of a healthcare transition program would benefit from the input of those who have gone through this process. Practice implications A well informed healthcare transition program can enhance the quality of life of those with thalassemia. The training and educational background of nurses and genetic counselors make them uniquely qualified to guide patients on how to advocate for themselves and to ensure continuity of care during a healthcare transition.
Article
Health care transition from adolescence into adulthood is a complex process that often lacks care coordination, planning, and collaboration among the parties involved. Dental transition is significantly more challenging for adolescents with special health care needs. Shortage of qualified general dentists willing to treat these individuals and low dental reimbursement by public insurance programs are significant barriers to successful transition. Adequate training to increase dental workforce, insurance benefits, protocol development, and research are needed to ensure successful transition for this population. Meanwhile, it is important to target individuals less likely to access adequate oral health care and achieve satisfactory transition.
Article
Adolescents with chronic health conditions transitioning from pediatric to adult healthcare services experience a wide array of difficulties. In response, transition programs have been developed. Transition programs commonly embody goals such as autonomy and independence. However, these may not be highly valued by young adults and their families. To assess critically the current evaluation of goals and outcomes of these programs, the concept of human flourishing offers a promising alternative to concepts of quality of life. It grants that objectives pursued (e.g., health, social integration) stand to be interpreted by the agent as being valuable and coherent with their meaning-making narrative. Flourishing is also an indicator of physical and psychological health. The purpose of this paper is to review the literature on transition care to assess whether and how flourishing is addressed in the evaluation of transition programs. We carried out systematic sampling of the literature and applied a qualitative thematic content extraction strategy. Based on Ryff and Singer's integrative concept of flourishing, we examined whether six key dimensions of flourishing (self-acceptance, positive relations with others, personal growth, purpose in life, environmental mastery, and autonomy) were present in current evaluation practices. We reviewed 105 relevant papers and found that (1) 44 out of 105 articles evaluated one or more dimensions of human flourishing; (2) there was considerable variation in the assessment of these dimensions, which was sometimes minimalistic; (3) no single evaluation was based on an explicit measure of human flourishing; (4) autonomy and positive relationships were the dimensions most investigated; (5) the evaluation of transition care mostly emphasized medical aspects of health. Considering its lifelong impact, it is crucial to better understand how transition care can support the flourishing of young adults. Open-ended views on flourishing based on participatory and collaborative research designs should be explored in this context.
Chapter
The management of pulmonary hypertension has evolved significantly over the past 30 years. The introduction of targeted pulmonary arterial hypertension pharmacotherapies revolutionized care for a once untreatable disease. With improved outcomes, an increasing number of pediatric patients are surviving into adulthood. However, patients face a significant morbidity burden, due to both the disease and the complex therapies used to treat it. This chapter reviews the epidemiology and pathophysiology of pulmonary hypertension, the impact the disease has on quality of life, and the aspects of care that are important to address during the transition process. Improved outcomes are seen when patients are well-educated about their disease, actively participate in their care, and are appropriately supported throughout their disease course.
Article
Resume Objectifs: Déterminer les caractéristiques des patients avec une arthrite juvénile idiopathique (AJI) vus à la transition dans le but de comparer les critères de classification pédiatrique et adulte. Méthodes: Les patients avec une AJI définie par la classification ILAR vus en consultation de transition entre 2010 et 2017 ont été inclus dans une étude rétrospective bi-centrique (Lyon, Lausanne). Les critères de classification des AJI ont été comparés aux critères ACR/EULAR de 2010 de la polyarthrite rhumatoïde (PR), aux critères de Yamaguchi pour la maladie de Still de l’adulte (MSA), aux critères ASAS de spondyloarthrite et CASPAR du rhumatisme psoriasique. Résultats: Cent trente patients ont été inclus: 13,9% avec une AJI systémique, 22,3 % avec une AJI polyarticulaire, 22,3 % avec une AJI oligoarticulaire, 34,6 % avec une AJI associée aux enthésites (ERA) et 6,9 % avec une AJI psoriasique. Parmi eux, 13,1 % ont souffert d’uvéite. Les atteintes structurales étaient représentées par 14,5 % d’érosions et de carpite, principalement observées dans les AJI psoriasiques, polyarticulaires ou systémiques. Dans le groupe ERA, 37,5 % des patients présentaient une sacro-iliite radiologique. En comparant les AJI aux rhumatismes adultes, nous avons trouvé que: 66,6% des patients avec une AJI systémique remplissaient les critères de MSA, 87,5 % et 9,5 % des AJI polyarticulaires, respectivement avec et sans facteur rhumatoïde, remplissaient les critères de PR et 34,5 % des AJI oligoarticulaires remplissaient les critères de spondyloarthrite. Enfin, 77,7 % des patients avec une ERA remplissaient les critères de spondyloarthrite et 100 % des patients avec une AJI psoriasique remplissaient les critères de rhumatisme psoriasique. Conclusion: Les AJI oligoarticulaires et polyarticulaires sans facteur rhumatoïde semblent être des entités pédiatriques, tandis que les autres types d’AJI remplissent les critères de classification des rhumatismes adultes correspondants.
Chapter
Der Übergang von einer pädiatrischen in eine internistische Betreuung geschieht in der Regel in einer besonders schwierigen und vulnerablen Lebensphase von Jugendlichen oder jungen Erwachsenen mit chronischen Krankheiten. Er stellt einen besonderen und eigenen Abschnitt in der Betreuung von jungen Menschen mit speziellen medizinischen Bedürfnissen dar. In dieser Zeit finden für den Betroffenen einschneidende psychisch-physische, persönliche, berufliche und soziale Veränderungen statt. Bei Stoffwechselerkrankungen kommt es nicht selten zu einer Verschlechterung der Stoffwechseleinstellung. Mögliche Unterschiede in der Betreuungskultur zwischen Pädiatrie und z. B. Neurologie oder Innerer Medizin können für den Betroffenen und auch für die betreuenden Teams Probleme bereiten. Sie eröffnen aber auch neue Möglichkeiten und Chancen. Geeignete Übergangsmodelle im Sinne von Übergangssprechstunden, strukturiertem Übergang (Checklisten, Transfer-Brief etc.) und der Nutzung von gemeinsamen Datenbanken setzen immer eine gute Kooperation aller Beteiligten voraus, z. B. zwischen Pädiater und Internist oder zwischen Neuropädiater und Neurologe.
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È ampiamente noto che il passaggio alla vita adulta costituisce una delle fasi cruciali per delineare il futuro e la qualità della vita delle persone. In un€epoca non tanto distante dall€attuale, tale passaggio era sostanzialmente concepito all€interno di una logica di prevedibilità e di «sostenibile» allineamento tra aspettative e opportunità. Tutto ciò consentiva ai giovani di affrontare questa fase con preoccupazione diversa rispetto a oggi. I significativi cambiamenti che sono intervenuti soprattutto negli ultimi anni, hanno notevolmente modificato la prospettiva rendendo la transizione alla vita adulta una fase estremamente complessa per tutti. La società odierna si caratterizza sempre più per le rapide e continue modificazioni alle quali le persone e i contesti sono esposti. Ecco perché questa fase può attivare accanto a visioni positive e aspettative stimolanti, ansie e timori per un futuro poco chiaro e difficile da rappresentare. Se tale passaggio risulta essere «difficile per tutti» è chiaro che per i giovani con disabilità intellettiva tale difficoltà assume una complessità ancora più rilevante. Richiede infatti il ricorso a importanti risorse sul piano personale. Spesso per alcuni giovani con disabilità i livelli di compromissione possono costituire delle barriere molto alte per immaginare processi di pieno sviluppo e inclusione sociale. Per questo motivo, pensare al futuro, costituisce molto spesso un fattore di forte preoccupazione e disorientamento per le persone e le loro famiglie. Le testimonianze di giovani adulti e di famiglie con disabilità riportano un frequente senso di abbandono percepito una volta raggiunta la maggiore età.
Chapter
La costruzione dei progetti di vita e dei piani individuali costituisce per i servizi una parte indispensabile del loro mandato. Al tempo stesso quest ambito di attività pre-senta innumerevoli questioni sul piano metodologico in riferimento ai processi decisionali e alle scelte da intraprendere, come anticipato nel corso del primo capitolo. Stabilire obiettivi e prendere decisioni sono elementi essenziali di qualunque programma psico-educativo e socio-assistenziale. Molto spesso si osserva come le cure, le attenzioni e gli interventi di caregiver e professionisti finiscono per risultare sostitutivi di buona parte delle decisioni e attività di vita quotidiana, da quelle più semplici a quelle più cruciali, della persona con disabilità.
Book
Il volume illustra gli strumenti e le metodologie evidence based per migliorare la qualità di vita delle persone adulte con disabilità. Partendo dall’interrogazione di quanto le pratiche che per tradizione sono erogate, siano effettivamente in grado di sostenere in modo appropriato i percorsi delle persone con disabilità nelle diverse fasi della vita, e sottolineando la necessità di avviare delle concrete azioni di analisi e di ripensamento dei servizi, degli interventi e delle proposte attraverso l’implementazione di strumenti di pianificazione e valutazione basati sull’evidenza, Qualità di vita nella disabilità adulta si propone come strumento pratico per migliorare la qualità di vita di persone adulte con disabilità. La riflessione proposta fa riferimento ad alcuni elementi di forte spinta innovativa che i più recenti contributi scientifici e culturali, in materia di disabilità, hanno contribuito a far emergere in modo sempre più significativo in questi ultimi anni: il costrutto della Qualità di Vita, come riferimento metodologico nella programmazione e valutazione degli interventi; il concetto e la pratica dei sostegni al funzionamento individuale; il riferimento al «modello ecologico» e alla pianificazione degli interventi nei reali ambienti di vita e contesti sociali di riferimento; l’orientamento agli esiti nella verifica e legittimazione delle politiche, programmi e interventi.
Article
Children with epilepsy comprise 3.2% of the estimated 500,000 youth with special medical needs who move from the pediatric to adult care model annually. These 16,000 children who require transfer each year represent a challenging subset of 470,000 youth living with epilepsy in the United States. Transition and transfer of care are complex and require gradual processes. This period for youth with epilepsy is often associated with inadequate follow-up and increased risk of nonadherence. Furthermore, youth and adults with epilepsy are known to have suboptimal social and emotional outcomes compared with peers, with high rates of under education, underemployment, poverty, and struggles with mental health. The goal of improving social determinants and continuity of care prompted the development of formal epilepsy transition clinics. Multiple clinic models exist, sharing the overarching goal of supporting youth while building self-management skills, tailored to age and developmental level. Early evidence shows that transition discussion leads to statistically significant increases in transfer readiness and self-efficacy in young adults with epilepsy. Our center boasts a 100% attendance rate at our transition and transfer clinic and 78% compliance with follow-up, further demonstrating that patients and families value quality transition programming.
Article
Objectives. To determine the characteristics of juvenile idiopathic arthritis (JIA) patients seen during the transition period in order to compare paediatric classification criteria with those for adults. Methods. Patients with JIA according to the ILAR classification and who had a consultation at transition between 2010 and 2017 were included in a retrospective bi-centre (Lyon, Lausanne) study. JIA classification criteria were compared to ACR/EULAR 2010 criteria for rheumatoid arthritis (RA), Yamaguchi criteria for adult-onset Still’s disease (AOSD), ASAS criteria for spondyloarthritis and CASPAR criteria for psoriatic arthritis. Results. 130 patients were included: 13.9% with systemic JIA, 22.3% with polyarticular JIA, 22.3% with oligoarticular JIA, 34.6% with enthesitis-related arthritis (ERA) and 6.9% with psoriatic arthritis. 13.1% had suffered from uveitis. 14.5% of patients had erosions or carpitis, mainly those with psoriatic arthritis, polyarticular or systemic JIA. 37.5% of patients with ERA displayed radiological sacroiliitis. When comparing paediatric JIA criteria with adult classifications, we found that: 66.6% of patients with systemic JIA fulfilled the criteria for AOSD, 87.5% of rheumatoid factor-positive polyarticular JIA and 9.5% of rheumatoid factor-negative polyarticular JIA met the criteria for RA, and 34.5% of oligoarticular JIA fulfilled the criteria for spondyloarthritis. Finally, 77.7% of patients with ERA met the criteria for spondyloarthritis, and 100% of patients with psoriatic arthritis JIA met the criteria for psoriatic arthritis. Conclusion. Oligoarticular JIA and rheumatoid factor-negative polyarticular JIA seem to be paediatric entities, whereas the other types of JIA tended to meet the respective adult classification criteria.
Chapter
Healthcare transition refers to the transition of care for youth with chronic disease from pediatric-oriented healthcare services to adult-oriented services. The primary goal of transition is to ensure that the move to adult healthcare services occurs seamlessly, resulting in continuity of care in a comprehensive, developmentally appropriate manner. Type 1 and type 2 diabetes are chronic illnesses significantly impacted by transition from pediatric to adult care. Successful transition requires a focused and purposeful process to optimize lifelong outcomes. This chapter aims to review aspects of transition of youth with both type 1 and type 2 diabetes to adult healthcare services. This includes models of transition care; patient, provider, and program characteristics; and the assessment of a patient’s transition readiness. In addition, we will address gaps in our understanding of this process and future needs to best support the population of adolescents and emerging adults with type 1 and type 2 diabetes.
Chapter
More than three quarters of children treated for cancer survive into adulthood with this number continuing to rise. Successful transition is now recognised as an important facet of care in both paediatric and adult medicine. It encompasses “the purposeful, planned movement of adolescents and young adults with chronic physical and medical conditions from child-centered to adult-oriented health care systems” (Blum et al. 1993). It is not simply transfer of care to another provider but should be a gradual process taking into account physical and psychological maturity as well as the availability and structure of local resources.
Article
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Introduction: Transition of medical care from pediatrics to adult can be challenging and difficult. Until the 1970s, only half of patients diagnosed with sickle cell disease (SCD) reached adulthood. As a result of patients living longer, there is a growing need to understand factors that influence readiness to transition. This descriptive study examined age-specific SCD knowledge, self-management skills of patients, and education goals in a convenience sample of patients and their parents. Method: One hundred eighty-three transition surveys were distributed during scheduled hematology clinic visits. Surveys were analyzed with descriptive statistics to determine differences of knowledge between age groups, self-care skills, vocational supports, and educational goals. The parent group consists of children aged 0 to 4 years (32), 5 to 8 years (52), 9 to 11 years (12); the child group consists of children aged 9 to 11 years (24) and 12 to 15 years (31); and adolescent and young adult (AYA) group consists of children aged 16 to 21 years (32). Results: Indeed, 50% of parents of the 0 to 4 years age group and 33% of 5 to 8 years age group knew their child's baseline hemoglobin. Only 38% of patients aged 16 to 21 years knew their baseline hemoglobin. However, 79% of patients aged 9 to 11 years, 74% of patient aged 12 to 15 years, and 78% of AYAs could name their hematology provider. Only 66% of patients aged 16 to 21 years knew what symptoms required medical attention. Discussion: Most patients and parents had adequate basic knowledge regarding SCD. AYAs lack the disease knowledge necessary to transition care away from parents to become more independent. An assessment for transition readiness should be ongoing to include disease-specific knowledge and self-management skills.
Article
Objective There is evidence that transition from pediatric to adult health care is frequently associated with deterioration of health in youths with type 1 diabetes (T1D). The aim of this study was to compare metabolic control, acute complications and microvascular complications in adolescents and young adults before and after transfer to an adult treatment center with respect to the time between first visit in the adult center and last visit in pediatric treatment. Methods All data were collected during routine care and retrieved from the German/Austrian DPV database. We analyzed data as of March 2017. Results We found 1283 young adults with available data of the last pediatric treatment year and the first year after transition to adult care.HbA1c increased significantly from 8.95% (74mmol/mol) before to 9.20% (77mmol/mol) in the first year after transition. Frequency of DKA with hospitalization (0.10 to 0.191 per annum, p<0.0001) and severe hypoglycemia (0.23 to 0.46 per annum, p=0.013) doubled during transition. Microvascular complications increased dramatically depending on the time between first visit in adult treatment and last visit in pediatric care. We could not find a significant correlation of this rise of microvascular complications to the duration of transition (short or long). Conclusion This phase of life bears a high risk for detrimental outcome in young adults with type 1 diabetes.Structured transition programs with case management are therefore needed in our country.
Article
I would like to set the stage for these papers and proceedings that focus on issues faced by youth with disabilities in transition to adulthood. The papers that follow are based on an international invitational conference held at Wingspread Conference Center in September 1994 and entitled Moving On: Transition from Pediatric to Adult Health Care. Over the last 25 years in the United States and throughout most of the industrialized world there has been a tremendous increase in the survival of young people with disabling conditions. Today in the United States approximately 90% of those born with a disability will reach the age of 20 years. Over the past 25 years we have seen a doubling in the prevalence of activity limiting chronic illnesses and disabilities from 2%-4% of the entire population. When we look at overall prevalence nearly one-third of children and youth in the United States have some form of chronic illness. (excerpt)