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Crossings: a manual for transition of chronically ill youth to adult health care
... Regardless of the model, experience suggests that there are some important principles that will help ensure comprehensive care. A planned, coordinated approach is essential [44, 49]. Anticipation of physical transfer from the time of diagnosis is one way of ensuring that the physical move is truly part of a transition process. ...
... Anticipation of physical transfer from the time of diagnosis is one way of ensuring that the physical move is truly part of a transition process. An adult physician or team that is both interested and capable of providing care is fundamental [49, 50]. Compilation of a detailed medical and allied health summary is important, as are regular meetings between the paediatric and adult providers for multidisciplinary services. ...
... More importantly perhaps, these meetings provide an opportunity for the specific exchange of medical and scientific information between teams which can help identify different approaches to management and may act to improve the quality of both services. There are few detailed accounts of the development of new partnerships, but the concepts are directly transferable from one disease type to another [49, 51, 52]. The importance of getting these structural and organizational issues right cannot be overemphasized. ...
For many parents and health professionals, adolescence is a frustrating, difficult and concerning stage, that they hope young people will pass through as quickly as possible. For many, the rapid physical changes of adolescence, all too often, herald changes in adolescent behaviour that result in healthcare no longer having the same priority for young people as it was when they were children and their parents had greater control. The onset of health-risk behaviours and states such as smoking, drug use, unsafe sex and depression, makes the thought of young people simply "snapping out of it" or "waking up to themselves" appealing. Child health professionals, may struggle to establish meaningful therapeutic relation-ships that used to come easily. Earlier efforts at promoting lung health can seem wasted when young people do not share the same priorities for their health, when they fail to follow advice or stop taking their medication. As adult health professionals, the lack of priority that young people place on their health, their failure to attend routine appointments or their apparent immaturity can be equally frustating. In response to these frustrations, health professionals often reassure themselves that adolescence is the healthiest time of life. Traditional measures of disease-based morbidity and mortality support this belief, with adolescents suffering less chronic illness and disease-related deaths than adults or older people. Young people concur, with two-thirds of them rating their health as either "excellent" or "very good" [1]. However, teenagers are the only segment of the population that has not seen a reduction in mortality over the past few decades [2] and the causes of morbidity have shifted increasingly towards social and mental health origins [3]. Young people with chronic respiratory disease are not immune from these broader health risks. Indeed, there is evidence that chronic illness places them at greater risk for participation in health-risk behaviours than healthy young people [4–6]. Within medical circles, the particular perspective that is brought to adolescents with regards to adolescence and their health, is as likely to depend on the position of the viewer as on the reality of adolescent health. As young people move from paediatric to adult healthcare, they risk being conceptualized as either at the end of childhood or the start of adult life. This dichotomous view renders adolescence, as a developmental period, relatively invisible from either medical perspective. It reinforces the notion of adolescence as the healthiest period of life, with health-risk behaviours and mental health disturbance easily dismissed as simply "a stage of life" or "adolescent blues". In doing so, there is a lack of understanding of the potential seriousness of these behaviours or states on disease outcomes, and the continuities of these behaviours and states into adult life. There is also a distinct lack of understanding about how health professionals can work Eur Respir Mon, 2002, 19, 42–59. Printed in UK -all rights reserved. Copyright ERS Journals Ltd 2002; European Respiratory Monograph; ISSN 1025-448x. ISBN 1-904097-22-7. with young people and their families in ways that promote more healthy life trajectories [7, 8]. For all young people, adolescence is a time of change, a time of challenge and a time of greater health risk. Young people with chronic respiratory conditions are first and foremost, adolescents. Understanding adolescent development, the impact this may have on disease management and how to successfully work with young people, will greatly enhance the capacity to achieve better lung health outcomes as much as it will enhance healthy developmental outcomes for young people in general.
... BioPsychoSocial Medicine 2012, 6:8 http://www.bpsmedicine.com/content/6/1/8 Australia, the importance of healthcare during this transition period has been acknowledged; there are guidelines for transition care and many studies have reported its effectiveness131415. The transition program is mostly problem oriented and its participants include patients, families, pediatricians, nurses, adult healthcare providers, and other healthcare professionals13141516. ...
... Australia, the importance of healthcare during this transition period has been acknowledged; there are guidelines for transition care and many studies have reported its effectiveness131415. The transition program is mostly problem oriented and its participants include patients, families, pediatricians, nurses, adult healthcare providers, and other healthcare professionals13141516. Discussions have begun among medical professionals in Japan on whether pediatric or adult healthcare services should provide care to adult patients with CCD [17]. ...
Advances in medical science have enabled many children with chronic diseases to survive to adulthood. The transition of adult patients with childhood-onset chronic diseases from pediatric to adult healthcare systems has received attention in Europe and the United States. We conducted a questionnaire survey among 41 pediatricians at pediatric hospitals and 24 nurses specializing in adolescent care to compare the perception of transition of care from pediatric to adult healthcare services for such patients.
Three-fourths of the pediatricians and all of the nurses reported that transition programs were necessary. A higher proportion of the nurses realized the necessity of transition and had already developed such programs. Both pediatricians and nurses reported that a network covering the transition from pediatric to adult healthcare services has not been established to date.
It has been suggested that spreading the importance of a transition program among pediatricians and developing a pediatric-adult healthcare network would contribute to the biopsychosocial well-being of adult patients with childhood-onset chronic disease.
... Merging of paediatric and adult renal databases to better track outcomes, evaluation of results with and without transition programs, and controlled trials with different types of transition interventions, are areas to be considered. Excellent models of transition to adult care have been developed for a number of disease groups, such as cystic fibrosis121314, congenital heart disease [15,16] and rheumatological disorders [17]; there are also outstanding general guidelines [14,181920. These should serve as a starting point; there is no need to replicate that which has already been well-done. ...
... Merging of paediatric and adult renal databases to better track outcomes, evaluation of results with and without transition programs, and controlled trials with different types of transition interventions, are areas to be considered. Excellent models of transition to adult care have been developed for a number of disease groups, such as cystic fibrosis121314, congenital heart disease [15,16] and rheumatological disorders [17]; there are also outstanding general guidelines [14,181920. These should serve as a starting point; there is no need to replicate that which has already been well-done. ...
... The goal of transition programmes is to provide uninterrupted healthcare that is patientfocused and age-appropriate (Knauth et al., 2006) while maximising the patient's quality of life and future opportunities (Blum et al., 1993). While the patient is the focus of transition, other significant participants include the patient's family, paediatric and adult cardiologists, nurses, psychologists, and other healthcare professionals (HCPs; Bronheim et al., 1995;McDonagh & Kelly, 2003). The America Heart Association (Sable et al., 2011) accords HCPs a central role during the transition process. ...
Background:
Due to medical advances, growing numbers of adolescents with congenital heart disease (CHD) survive into adulthood and transferring from paediatric to adult healthcare. This transfer is significant step in a young person's life, and this study examines the views of Irish healthcare professionals' on how best to manage this transition.
Methods:
Purposeful sampling was used to invite participation by healthcare professionals (HCPs) from a variety of disciplines whose caseloads include adolescents and young adults with CHD. Fourteen professionals participated in semistructured interviews regarding their experiences of the transition process and their recommendations. Data were collected during Spring 2016 and analysed using thematic analysis.
Results:
Results indicated that the current approach to transition and transfer could be improved. Professionals identified barriers hindering the transition process such as cultural and attitudinal differences between HCPs dealing with child and adult patients, inadequate preparation and education of patients about their condition, parental reluctance to transfer, and concern about parents' role in on-going treatment. Measures such as better support and education for both the patients and their parents were recommended, in order to facilitate a smoother transition process for all parties involved. Additionally, HCPs identified the need for better collaboration and communication, both between paediatric and adult healthcare professionals and between hospitals, to ensure greater continuity of care for patients.
Conclusions:
Action is required in order to improve the current transition process. Measures need to be taken to address the barriers that currently prevent a smooth transition process for young adult CHD patients. Professionals recommended the implementation of a structured transition clinic to deal with the wide variety of needs of transitioning adolescent patients and their families. Recommendations for future research are also made.
... This transition has been defined as a multifaceted, active process that attends to the medical, psychosocial, and educational needs of adolescents as they move from child-to adult-centered care (4). Transition programs should involve patients, families, pediatricians, nurses, adult healthcare providers, and other health-care professionals (11,12), and they should encompass medical, psychosocial, and ethical issues adequate to the various cultural and religious backgrounds. ...
... Transitional care is widely defined as "the purposeful, planned movement of adolescents and young adults with chronic physical and medical conditions from childcentered to adult-oriented healthcare systems" [13]. An effective transition process can provide appropriate, high-quality, and uninterrupted medical care services for the patient, as well as a communication platform for the main participants in the patient's treatment, including the patient, family members, paediatricians, nurses, adulthealthcare providers, and other healthcare professionals [14][15][16][17][18][19][20][21][22], to enhance the patient's health, life outcomes, self-management and autonomy [23,24]. ...
Background
To investigate the progress of transition from paediatric to adult health care for patients with cancer in Taiwan’s medical system.
Methods
The data were retrieved from the Longitudinal Health Insurance Database (LHID), which contains the original inpatient and outpatient medical claims data for 1,000,000 enrollees randomly sampled from the NHIRD between 1997 and 2010.
Results
Among the 1,411 cancer patients selected for this study, 98.09 % received adult-oriented therapy before the age of 18. In addition, only 1.91 % of the patients received paediatric-oriented therapy during adolescence. The primary factors that determine whether these patients would receive paediatric-oriented therapy or adult-oriented therapy at an early age were as follows: the age of the patient at the first visit and the performance-level of the hospital (p < 0.001).
Conclusions
Previous studies conducted in developed countries have demonstrated that the unwillingness of patients to switch from paediatric-oriented therapy to adult-oriented therapy being the major obstacle that hinders the transition process. However, this study revealed a different result: the implementation of the National Health Insurance system in Taiwan makes healthcare affordable for the adolescent patients who may not possess adequate knowledge about paediatric health care and may not appreciate paediatric-oriented therapy, thereby hindering the transition process.
... Patients and providers may need time to connect personally, and across systems or cultures of care [20]. Adult-oriented health providers may be less prepared to take on the care of former pediatric patients, particular those with rare diseases [21,22] and may respond with trepidation or reluctance [23,24], particularly when conditions are evolving or new to their practices. Community efforts to highlight the needs of newly adult patients include the creation of a transition guide for patients and families [25], attention to patient-and familyoriented needs at professional and consumer conferences, and advocacy-group presence at meetings of adult-oriented nephrologists. ...
Background
Rare diseases pose transitioning challenges owing to limited provider expertise and changing healthcare systems. The timeframe and developmental changes of emerging adulthood overlap with the transition of patients with cystinosis from pediatric to adult-oriented healthcare.
Methods
This study utilized techniques of qualitative grounded theory to explore the experiences of adults aged 18–47 with cystinosis, and their parents, with a focus on the transition to adulthood and adult-oriented care. Forty-six individuals from 21 families were recruited online and at cystinosis conferences to participate in focus groups and/or individual interviews. The constant comparative method was used to conduct both line-by-line and focused coding of verbatim transcripts.
Results
The following elements were reported to be critical to the transition to adulthood and adult-oriented care: gaining skills and responsibility for disease management, progressing toward autonomy while remaining connected to caregivers, and having strong communication with and between providers.
Conclusions
Data analysis identified behaviors and relationships that support and/or threaten autonomy and treatment adherence. Participants described institutional, relational, and practical barriers to transition. Suggestions for improving transitioning include: identifying patient/family strengths and improving pediatric–adult provider partnerships and communication. Further research is needed into the experience of patients before and after transition to adult-oriented care.
Pediatric-to-adult transition in chronic disease care is often poorly managed. While there is growing interest in this field, existing reviews of transition models, which are critical in informing the development of best practices and evaluation metrics in transitional care, do not explore the critical design features of models that best improve health outcomes. This systematic review compares existing such models and the design features that positively impact clinical outcomes. Five databases were searched (Medline, CINAHL, EMBASE, PubMed, CENTRAL) until 2018. English-language evaluations (with defined clinical outcomes) of existing models for patients aged 13-28 with a pediatric-onset chronic disease were pulled. Cochrane tools were used for data extraction and risk-of-bias assessment.
Twenty-nine studies showed improvements in outcomes for 10 pediatric-onset chronic diseases. A narrative synthesis of findings revealed two broad model types: transition clinics involving single or multiple appointments and/or multidisciplinary team, and transition program facilitators. Both model types included examples of remote (online or telephone) care. Most studies focused on a standardized multidisciplinary transition process that emphasized care coordination. All types resulted in improvements in access to medical care, reduced acute and chronic complications, and increased rates of follow-up. Commonly used strategies in successful programs were patient/family education, transition clinics jointly staffed by pediatric/adult physicians, or clinics dedicated to young adults within adult services. Despite the importance of effective transitional care, there are no commonly agreed upon quality metrics in transition care. Standardized evaluation metrics to compare models across disease types are needed.
The growing number of young adults with neurodevelopmental disabilities and chronic diseases necessitates a careful consideration
of the issues involved in transition of these youth from a child-focused to an adult-oriented health-care system. Most adolescents
accomplish the transition successfully as a natural process of growth and maturation in all spheres of life. Presence of chronic
disease or disability, however, adds a significant dimension to the transition process and affects all areas of the adolescent’s
life – medical care, educational, vocational, daily living and activity, financial, and employment. The psychological and
psychosocial impact of chronic illness or disability on the youth and family has been well documented. A brief overview of
issues as they relate to transition of medical care of adolescents and young adults with chronic disease or disability from
child-oriented to adult-oriented system of health care is presented here.
It is widely believed that the improved survival of young people with chronic diseases will be associated with the development of appropriate services within the adult healthcare domain. There is, however, little evidence to suggest that this is happening at a rate commensurate with clinical requirements. This paper highlights the multiplicity of barriers that impede the development of transition services to facilitate the transfer of medical care from the paediatric to the adult domain. Different models of transition care are described, and the terms 'transfer' and 'transition' are differentiated. The clinical demand for service development is highlighted, as well as the need for specific research in this area of healthcare delivery.
The fate of older adolescent patients in paediatric clinics is either one of transfer to adult services, long term retention in the paediatric clinic, or discharge from medical supervision, either voluntarily or by neglect. Neither simple transfer to adult doctors nor allowing adolescents to “drop out” of medical care is now acceptable quality care for young people with chronic illness. Arranging efficient and caring transfer for adolescents from paediatric to adult care is one of the great challenges facing paediatrics—and indeed the health services—in the coming century.1
Many illnesses once considered to be confined to childhood, such as cystic fibrosis and metabolic conditions, must now be thought of as diseases that begin in childhood but continue into adult life. Paediatric and adult medicine differ greatly in their approach to issues of growth, development, patient agency, and involvement of the family—differences that may become more noticeable with the recent separation of paediatricians from the Royal College of Physicians in the UK. Adolescents sit poorly between the family centred, developmentally focused, paediatric paradigm (which frequently ignores their growing independence and increasingly adult behaviour) and the adult medical culture, which acknowledges patient autonomy, reproduction, and employment issues but neglects growth, development, and family concerns.2
The simple matter of transferring care to adult physicians has been challenged in the past decade by the notion of “transition”, emphasising the need for the change to adult care to be a guided educational and therapeutic process, rather than an administrative event.3 To achieve effective transition, it must be recognised that transition in health care is but one part of the wider transition from dependent child to independent adult and that, in moving from child centred to adult health services, young people undergo a change that is systemic and cultural, as well as clinical.2 …
Unlabelled:
Although most patients with cystic fibrosis (CF) survive into adulthood, many CF centres are still run by paediatricians. A transition programme from the paediatric CF unit to a newly established CF clinic at the Department of Internal Medicine was carried out for the whole group of patients > or =18 years. We aimed to evaluate our patients' opinion of the transition by analysing the results of two surveys performed before and after the transition. Nine months before the transition, we mailed an anonymous questionnaire. Statements regarding the forthcoming transition were to be answered on scales from 1 to 4, and the patients had to check a list of adjectives describing the current treatment in the paediatric CF centre as well as the presumed care in the adult unit. Fifteen months after the transition, a second survey with similar questions was carried out.
Results:
44 of 68 patients (65%) aged 18 to 33 years replied to the first and 56% of patients to the second questionnaire. Mean duration of treatment at the paediatric CF centre was 7.5 years (range: 1 to 22 years). Twelve patients each were classified as supporters or opponents of the transition, the remaining patients as intermediates. Older patients and those who had not required hospitalisation during the preceding year had a more positive attitude to the transition (p <0.05). There was a linear relationship between the transition attitude score and the presumed quality of care in the Internal Medicine Department (r = 0.62, p <0.001), but no relation to the quality of present paediatric care (r = -0.09, p = 0.59). In the second survey, patients rated the quality of care in the adult CF unit better than prior to the transition.
Conclusions:
The transition from paediatric to a newly established adult CF centre was accepted by most adult CF patients. Thorough training of all staff of the new adult unit and a close co-operation between both departments are pre-requisites to guarantee a smooth transition of all patients.
With improved medical technology, many chronic medical conditions of childhood are now recognized as conditions of childhood onset. Appropriate treatment of these conditions in the adult patient is required. The pediatric setting is not appropriate in terms of philosophy, service delivery, and relationship with the patient. To design a suitable transition protocol, a survey of teenage patients with cystic fibrosis was carried out and the process was discussed with the relevant clinicians. The results of the survey indicated that young people identified transition to an adult service as necessary and accepted, provided that good preparation is given from the pediatric setting. This article provides a detailed example of a model of transition for cystic fibrosis services to encourage practice and evaluation of provision.
Adolescent dialysis patients transitioning to adult care are particularly vulnerable, dependent on complex, demanding and life-sustaining treatment. There is little published information on transition practices for this group. Therefore, a survey was carried out to assess the current status. Results are presented for 58 paediatric dialysis centres in North America and Europe. The majority of centres (53%) did not have a fixed cut-off age for transfer. For those that did, it ranged from 17 to 22 years, with the median 20.5 years and mean [+/- standard deviation (SD)] of 19.9 (+/-1.5) years. Only one third of centres reported a transition programme. Less than 20% of young adult patients were perceived to function autonomously at transfer. The paediatric centres had minimal knowledge of resources at the adult receiving sites. For the majority of programs there was a system in place to assist with application for social and health benefits (83%), an adult dialysis unit linked to the paediatric programme (62%) and an opportunity for patients to choose (78%) and visit (83%) the adult unit prior to transfer. Seventy-four percent of centres without a transition programme believed there was a need for one. This is an area clearly in need of attention.
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