Abstract
Children and adolescents with chronic respiratory disease become adults with chronic respiratory disease. As a result of ongoing improvements in health care, this is now increasingly the norm rather than the exception. Therefore professionals who look after children and adolescents with chronic illness have a responsibility to consider how their patients’ health care needs will continue to be met as they become adults. This chapter discusses the background to transition from pediatric to adult health care and provides a practical approach to assist health professionals, administrators, patients, and families to plan and negotiate the process.
Keywords
adolescent and young adult, chronic illness, youth participation
Introduction
Children and adolescents with chronic respiratory disease become adults with chronic respiratory disease. As a result of ongoing improvements in health care, this is now increasingly the norm rather than the exception. Therefore professionals who look after children and adolescents with chronic illness have a responsibility to consider how their patients’ health care needs will continue to be met as they become adults. This chapter discusses the background to transition from pediatric to adult health care and provides a practical approach to assist health professionals, administrators, patients, and families to plan and negotiate the process.
What Is Transition?
Transition, as defined by the Society for Adolescent Health and Medicine in the United States, is a “purposeful, planned process that addresses the medical, psychosocial and educational/vocational needs of adolescents and young adults with chronic physical and medical conditions as they move from child-centered to adult-oriented health care systems.” There is a wide range of chronic pediatric respiratory disorders that persist through adolescence into adulthood ( Box 14.1 ). For some conditions, such as cystic fibrosis, models of transition are already relatively well established, with the existence of recognized specialist adult centers and clear pathways to facilitate the move from pediatric to adult care. For other, rarer (e.g., primary ciliary dyskinesia) or more heterogeneous conditions (e.g., bronchiectasis), transition models are less well established. Finally, there is an increasingly large cohort of adolescents and young adults growing up with respiratory disorders (e.g., chronic lung disease associated with extreme prematurity, muscular dystrophy, or ventilator-dependent airway malacia) with which adult health professionals may have had little or no clinical experience and minimal training. These young adults may have associated co-morbidities, (e.g., significant neurologic disease or cognitive impairment) that present an additional challenge to ensuring a successful transition.
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Cystic fibrosis
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Asthma
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Primary ciliary dyskinesia
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Other causes of bronchiectasis (e.g., immunodeficiency, postinfectious)
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Interstitial lung disease
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Chronic lung disease of prematurity
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Obliterative bronchiolitis
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Neuromuscular disorders (e.g., muscular dystrophy)
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Tracheomalacia/bronchomalacia
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Lung transplant recipients
Why Is Transition Important?
Before outlining some of the practical steps involved in developing a transition plan, it is important to consider why the process needs to be addressed at all. Why should patients and families, who have developed a trusting and collaborative relationship with their health care providers over many years, have to leave this behind and develop a completely new set of relationships? There are a number of aspects to this question. These include acknowledging the process of adolescent development, the emerging health care needs and patterns of morbidity in adulthood, the differences between pediatric and adult models of care, and the views of patients and their carers.
Understanding Adolescent Development
For adolescents and young adults with a chronic respiratory disorder, the transition from pediatric to adult health care is just one of a number of transitions they will encounter. Adolescence refers to the developmental stage between childhood dependence and adult independence. During this time, individuals begin to establish their own identity and self-image and take on adult roles ( Box 14.2 ). Key tasks that adolescents and young adults usually complete include developing independence from parents or caregivers, forming relationships outside the family, and providing for themselves financially. Significant transitions during this period include leaving school and joining the workforce or enrolling in higher education, moving away from the parental home, and possibly becoming parents themselves. Health professionals who work with adolescents and young adults need to acknowledge and understand this process of adolescent development, and recognize that the transition from pediatric to adult health care occurs within the wider context of a more general transition from childhood to adulthood.
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Separate from parents
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Develop a coherent sense of self
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Come to terms with physical self
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Come to terms with sexual self
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Develop mature altruistic relationships
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Develop financial independence
Seen within this context of increasing independence and autonomy, transition to adult care thus sends a powerful message to young people with chronic illness that they have a future and that they are expected to participate in and contribute to society as adults, which the majority of young people with chronic illnesses go on to do. Remaining within the pediatric health care system may give the impression that living life as an adult is unlikely to be achievable. With increasing age and maturity, many young people become increasingly uncomfortable being cared for in a child-centered setting. A danger of not addressing the transition to adult care is that they may become lost to follow-up when they decide for themselves that they have outgrown their pediatrician.
It is also important to be aware that some young adults with chronic illness (e.g., those with muscular dystrophy, severe neurologic impairment, or who are ventilator dependent) will never be able to attain the same degree of independence as that achieved by their healthy peers. However, this does not mean that these young adults should be looked after within a pediatric model of care indefinitely. There are many ways to acknowledge a young person’s development into adulthood (seeing them on their own, discussing age-appropriate topics, providing them with opportunities to be involved in decision making), even if their physical independence is limited. These issues are discussed in more detail later in the chapter. For young adults who are physically dependent on others for providing aspects of their care, one obvious example of emerging adulthood can be seen when this assistance is no longer provided by parents but by other adults (e.g., friends or partners).
Adult Health Care Needs and Patterns of Morbidity
Pediatricians are trained to deal with children and, increasingly, with adolescents. However, few are trained to provide care for adults. In the same way as pediatricians recognize that it is inappropriate for adult-trained physicians to manage young children, it also becomes increasingly inappropriate for pediatricians to continue to care for their patients once they have completed the tasks of adolescence and are living their lives as adults. While pediatricians may feel relatively confident and competent managing certain disease-specific aspects of respiratory disorders, such as asthma or bronchiectasis, more general areas of adult health care (e.g., sexual and reproductive health, cardiovascular problems, or liaison with employers) are likely to be less well managed. There are some clinics (e.g., for cystic fibrosis) in which the same team provides care for children, adolescents, and adults. However, in the interest of optimal health care, it is important that whatever model is employed, professionals who manage adults with chronic respiratory disease receive adequate training in general adult health issues. Adult-trained physicians may be more likely to address issues, such as fertility, teratogenicity of treatments, and the importance of genetic counseling, which pediatric physicians may not be as comfortable discussing.
Differences Between Pediatric and Adult Models of Care
Logistical and financial considerations also come into play when considering transition. Pediatric and adolescent medical departments are not designed or funded to provide care for adults. Budgets are limited, and staffing, equipment, and hospital systems are designed to provide high-quality and developmentally appropriate care for infants, children, and adolescents rather than adults. Therefore at some point, a decision must be made to transfer adolescents and young adults with chronic illness to a unit that can provide developmentally appropriate care.
Traditionally, the adult model expects patients to take responsibility for their own care. If they do not attend for regular outpatient review, they are less likely to be contacted and followed up than if they are being managed within a pediatric setting. A challenge for adult physicians is to recognize and understand that adolescents and young adults are still developing and that they may continue to need a greater degree of involvement by the health care team, at least for the first few years after transfer.
What Is the Evidence Base for Transition?
Over time, a number of principles regarding the transition process have been developed, which have gained widespread consensus. A number of studies have highlighted problems associated with unsuccessful transition from pediatric to adult care, in different subspecialty areas. These include unexpected transplant rejection following transfer to adult care in young adults who had received renal or liver transplants in childhood, and the deaths of young adults with congenital heart disease who were cared for by clinicians lacking specific training in the management of these conditions. The absence of an appropriately trained adult team is a significant barrier to successful transition, as discussed later in the chapter. Less extreme consequences of unsuccessful transition to adult care include the loss of young adult patients to follow-up, frequent missed appointments, and deterioration in disease control. For young people with chronic respiratory disease, there is a very real possibility that lack of regular contact and follow-up with the medical team over a number of years can result in a major and potentially irreversible deterioration in lung function and quality of life.
The evidence base for particular transition programs is small. What evidence there is suggests that having planned transition activities for chronic disease is preferable to none at all, with improvements in adult clinic attendance, disease control, and fewer complications when there are pathways in place. Cole et al. (2015) implemented a transition service for young people with inflammatory bowel disease, which resulted in decreased admissions and need for surgery, and improved adherence to medication and clinic attendance following transfer to adult health care, compared with those who did not go through the program. In young people with type 1 diabetes, establishing a formal transition pathway has been shown to improve adult clinic attendance, HbA1c measures, and patient and carer satisfaction. In chronic respiratory disease, the most substantial evidence relates to the transition of young people with cystic fibrosis. Progressing through a transition program, or at least the introduction of the adult team prior to transfer, has been shown to reduce patient and parent concern regarding transition to an adult service. Gravelle and colleagues evaluated three components of their transition program—a clinical pathway, a joint pediatric and adult pregraduation workshop for patients, and a readiness for transition scale delivered to young people about to graduate from pediatric services. The combination of these interventions led to improved identification of deficits in patient knowledge and improved patient understanding of the adult care system and confidence for transition. In terms of disease outcomes, one study found that young people appropriately transferred to adult care had a less rapid decline in lung function, compared with disease severity–matched patients who remained in pediatric care centers. Duguépéroux and colleagues have described outcomes for young adults with cystic fibrosis 1 year after transfer to an adult center and demonstrated that the clinical status of the patients transferred remained stable, with an increase in the mean number of outpatient attendances in the year after transfer to the adult center, compared to the year before.
Transition: A Practical Approach
Transition refers to the process of preparing adolescents and young adults for the move to the adult health care system and to an adult health team. It is widely acknowledged that this is a continuous process leading to the single event of transfer of care. The transition process needs to be planned in advance and begin early. While there are certain elements of transition that are disease-specific, there are many aspects that are generic to all chronic illness. Russell Viner, a leading advocate for adolescent and young adult health in the United Kingdom, has summarized the approach to transition as follows :
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Prepare young people and their families well in advance for moving from pediatric to adult services
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Ensure that they have the necessary skill set to survive and thrive there
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Prepare and nurture adult services to receive them
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Listen to young people’s views
Preparing Young People for Transition
Preparing young people and their families for transition involves discussing the process with them early. Some suggest making transition a topic of discussion from the moment of diagnosis. In practice, this may prove difficult, given the amount of information that families have to take in at the time of diagnosis of a chronic illness. However, the prospect of transition to adult care is an issue that needs to be brought up in any discussion of long-term prognosis—a subject that usually arises in conversations at an early stage. For older children and adolescents, there is no “right” time to start increasing the focus on transition. However, the consensus is that the emphasis on transition should increase as children enter adolescence, often at the same time as they move from primary to secondary school. Transition is one aspect of the wider process of providing developmentally appropriate health care for adolescents. Health professionals can employ certain practical strategies to help promote healthy adolescent development and prepare adolescents for their subsequent move to adult care. These strategies include the following:
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Seeing adolescents on their own, separate from their parents, for part of the consultation
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Emphasizing the importance of confidentiality
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Discussing their understanding of their illness and actively promoting self-management
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Addressing general adolescent health issues, in addition to those related to their specific condition
Seeing adolescents alone for part of the consultation is a visible way of demonstrating to them and their families that adolescence is a time of developing independence. It conveys a message to the whole family that it is appropriate for the adolescent to begin to take increasing responsibility for his or her own health. A major advantage of seeing adolescents alone is that it increases the chance that they will talk. Asking questions about school, friends, and activities shows an interest in the adolescent as an individual, rather than in his or her disease. This allows time for a rapport to develop and provides an opportunity to see how the young person’s illness fits in with the rest of his or her life—in particular, whether or not the adolescent sees his or her condition and its treatment as a priority.
Box 14.3 shows the Home, Education, Eating, Activities, Drugs, Sexuality, Suicide, Safety (HEEADSSS) framework, used widely around the world, which is a helpful guide for clinicians to use when interviewing adolescents. HEEADSSS begins with relatively unthreatening questions about home, school, and activities. These have the dual purpose of gathering information and allowing time to develop rapport. However, difficulties in these areas (e.g., prolonged school absence, no hobbies or interests) may be a reflection of poor disease control or other underlying problems, such as anxiety or depression. As discussed later in the chapter, mental health problems and health risk behaviors, such as smoking, alcohol, and other drug use, are common in adolescents with chronic illness and always need to be considered. It is essential that such a risk and protective health screen is used at the outset of adolescence and is continually revisited and updated.
H Home
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Where do you live? Who lives with you?
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What are relationships like at home?
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Who would you talk to if you had a problem?
E Education (or Employment)
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Which school do you go to? Which year are you in?
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Which subjects do you enjoy? What are you good at?
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Who do you spend time with at school? What are the teachers like?
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Is your school a safe place?
E Eating
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Does your weight or body shape cause you any stress?
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Has there been any change in your weight recently?
A Activities
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What do you enjoy doing outside of school?
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Are you in any clubs or sports teams?
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Who do you meet up with at weekends?
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Do you see your friends mostly in person or catch up online?
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Some young people tell me they spend a lot of time online. What sort of things do you use the internet for?
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How many hours per day do you spend using screens (computer/television/phone)?
D Drugs
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Do any of your friends or family smoke cigarettes or drink alcohol? How about you?
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How much do you smoke/drink? Every day? On weekends?
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Have you ever tried marijuana or other drugs not prescribed to you?
S Sexuality
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Are you interested in boys, girls, or both? Are you not yet sure?
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Have any of your relationships been sexual relationships?
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What do you understand by the term “safer sex”?
S Suicide
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Do you feel stressed or more anxious than you would prefer to feel?
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Do you have any trouble with your sleep pattern?
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How would you describe your mood? Do you ever get really down?
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Some people who feel really down often feel like hurting themselves or even killing themselves. Have you ever felt like that?
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Have you ever tried to hurt yourself?
S Safety
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Is there any violence at your home or school? Do you feel safe at home?
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Have you ever met (or planned to meet) with anyone whom you first encountered online?
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Have you ever been seriously injured? How? How about anyone else you know?
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