Transitioning care of the pediatric recipient to adult caregivers

Pediatr Clin N Am 50 (2003) 1561 – 1583

Transitioning care of the pediatric recipient to adult caregivers Janet E. McDonagh, MD, MRCPa,*, Deirdre A. Kelly, MD, FRCP, FRCPCHb a

Institute of Child Health, University of Birmingham and Birmingham Children’s Hospital NHS Trust, Steelhouse Lane, Birmingham B4 6NH, UK b University of Birmingham and the Liver Unit, Birmingham Children’s Hospital NHS Trust, Steelhouse Lane, Birmingham B4 6NH, UK

From a medical perspective, great advances have been made over the past 20 years in improving the survival rates and medical outcomes for child and adolescent recipients of solid organ transplants. The challenge remains, however, of developing transitional care for these young people, care that is as developmentally appropriate as the medical care is technically and pharmacologically sophisticated. With increasing numbers of young transplant recipients surviving into adulthood, the development of transitional care demands effective collaboration at the pediatric-adult interface and is a major challenge for pediatric and adult providers alike in the twenty-first century. This article highlights some of the key aspects—the what, why, who, when, and where—of transitional care. In view of the limited literature on transition in pediatric transplantation and the fact that many issues facing young people with transplants are generic to any chronic illness and are not disease specific, reference is made to the larger body of generic transitional care literature.

What is transition? Transition is a major quality issue in the care of all young people with complex health care needs, such as individuals involved in solid organ transplantation. Transition has been defined as ‘‘a multi-faceted, active process that attends to the

* Corresponding author. E-mail address: [email protected] (J.E. McDonagh). 0031-3955/03/$ – see front matter D 2003 Elsevier Inc. All rights reserved. doi:10.1016/S0031-3955(03)00131-7

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medical, psychosocial and educational/vocational needs of adolescents as they move from child to adult centred care’’ [1]. The aims of transition are as follows: 

to provide high quality, coordinated, uninterrupted health care that is patientcentered, age and developmentally appropriate, culturally competent, flexible, responsive, and comprehensive  to promote skills in communication, decision-making, assertiveness, selfcare, and self-advocacy  to enhance sense of control and interdependence in health care  to maximize life-long functioning and potential One common misinterpretation is that transition is synonymous with transfer. Transfer to adult care is only one of many events of the much longer transition process. Transition ideally is a planned process with appropriate preparation, which starts early. In a report from the United States, the reasons for failure of successful transition into adult health care system were (1) financial and (2) lack of planning [2]. The unpredictability and lack of certainty of many chronic illnesses (including the outcome of transplantation) can accentuate further the negative effects of deficient transition planning. If transition is ‘‘forced’’ at a time when a young person is ill prepared, the perceived lack of control and choices is further emphasized and successful transition becomes less likely.

Why transition? Transition is above all an important message to convey to young people themselves: that they are growing up and out of the pediatric service and into the adult world. A future-focused orientation of providers has been emphasized as critical for successful transition [3,4]. As survival increases, so does the awareness of the morbidities of transplantation (described elsewhere in this issue). Just as pediatricians call for age and developmentally appropriate care for children and adolescents, adults with childhood-onset disease also should receive appropriate adult-focused health care [5]. For some specialties this focus requires workforce planning; adult physicians may not be familiar with these ‘‘new’’ diseases because patients usually died during childhood (eg, inborn errors of metabolism before effective therapy or the development of transplantation). Information from adult physicians regarding long-term outcome data is vital for counseling young people with these conditions by their pediatric colleagues. Transitional care is, in essence, what the young people want. Durst et al [6] reported that adolescents with cystic fibrosis after lung transplantation had strong desires to set and attain meaningful long-term goals and expressed a need to control as many aspects of their lives as possible—important aspects of transitional care. Unmet needs during the transitional period have been recognized in other specialties that care for young people with chronic illnesses (eg, rheumatology) [7,8].

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Box 1. Main tasks of adolescence 

To To  To  To 

consolidate one’s identity establish relationships outside the family achieve independence from parents find a vocation

Transitional care acknowledges the reciprocal influences of adolescent biopsychosocial development and the underlying chronic illness and transplantation. In addition to transitioning from pediatric to adult care, adolescents who have undergone solid organ transplantation also have made a transition from a familiar or well-known end-stage disease to a different chronic condition. They still may have an uncertain future, remain dependent on a medical team, have to adjust to complex medication regimens, accept changes in their external appearance, and adjust to significant lifestyle changes. They may continue to require periods of hospitalization and even further surgery. Chronic illness may affect physical development during adolescence (eg, delayed sexual maturation and physical growth). In turn, physical growth can affect the pharmacokinetics of drugs (eg, increased sensitivity to corticosteroid toxicity at puberty). Cognitive development is driven by increasing myelination and maturation of the central nervous system during adolescence, and it results in the development of more adult-like abstract thinking and a more complete personal identity. This development can be affected by drug side effects, school side effects, pain, and fatigue. The stage of cognitive development is important in planning health and disease education for such young people and their involvement in decision making and self-care. In contrast to the biologic and cognitive changes, which are fairly universal, the psychosocial changes of adolescence are largely culturally determined. In Western cultures, the social ‘‘tasks’’ of adolescence are concerned with establishing relationships outside the family, achieving independence from parents, and establishing financial (ie, vocational) independence. These processes are outlined in Box 1. Conversely, the imperatives of adolescent development (eg, the search for identity and independence, immature abstract thinking) may make chronic illness management problematic through poor adherence to medical regimens and ‘‘risky’’ health behaviors.

Differences between pediatric and adult health care There are disease-specific differences between pediatric and adult health care because pediatric transplant recipients differ from their adult counterparts in terms of age, primary diagnoses, type of graft, donor population, posttransplant complications, and longer potential life span in which to develop complications (eg, re-

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current disease, osteoporosis, atherosclerosis, renal failure, posttransplant malignancies) [9]. These differences must be recognized by adult providers so that the belief that childhood-onset disease is the same as adult-onset disease can be dispelled aggressively. Professionals who have worked in pediatric, adolescent, and adult health care realize the important differences in clinical practice and the different skills required in caring for adolescents and their families, particularly adolescents with chronic illnesses (Box 2).

Growth and development As in all of pediatric medicine, the growth and development of the young person contrasts with the aging and senescence of adult medicine. The bidirectional influences of a chronic illness and adolescent development (physical, cognitive, and psychosocial) must be anticipated and addressed by the multidisciplinary transplant teams. Evidence from other chronic illnesses suggests that pediatricians and adult physicians are poor at monitoring growth and pubertal development in chronic illness, and continued attention to growth in persons with chronic illness is required well into the early twenties, especially when growth retardation has been caused by the primary disease [10]. Conversely, as young people become older adults, health care providers must be skilled at age-appropriate management for this age group (ie, adult medicine rather than pediatric medicine).

Consultation dynamics The paternalistic triangular model that is characteristic of pediatric care with parent, professional, and child moves through various models during adolescence until the horizontal adult relationship of patient and professional is achieved. Communication and counseling skills are important aspects of training for clinicians who work with young people in this age group, and there is evidence from randomized trials that these skills can be learned [11].

Box 2. Differences between pediatric and adult health care         

Spectrum of disease Impact of disease Growth and development versus aging Consultation dynamics Communication Decision-making processes Role of parent and family Generic health issues Adherence issues

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Communication skills Acquiring mastery of such consultations requires communication skills and strategies, which may vary depending on the subject matter, circumstance, and the respective stage of adolescent development. As they mature, young people normally develop from using emotional strategies (such as wishful thinking or resignation) to problem-solving strategies. Chronic illness can interfere with this development or cause the adolescent to regress in this respect. Unpredictable diseases often tend to encourage the use of emotion-focused coping strategies. Emotion-based coping strategies have been related to self-reports of depression, anxiety, and substance abuse in adolescents, whereas when a problem-based approach is used, mothers and young people report fewer emotional and behavior problems [12]. Evidence from other chronic illnesses Some evidence supports the benefits of coordinated transitional care programs in other chronic illnesses, such as Juvenile Idiopathic Arthritis (JIA) [13], diabetes [14,15], and cystic fibrosis [16].

When should transition take place? The essence of transitional care is that it ideally starts early, with promotion of resilience and self-determination in young persons—whatever their age—and their families. No single or arbitrary milestone heralds transition readiness in individual patients and their parents. In keeping with the concept of transition being a process, there is no age cut-off for the end of transition or the event of transfer to adult care. The essence of timing in all aspects of transition is that of flexibility. Timing of events within the transitional process depends on many variables and must be individualized for each patient (Box 3). Any plan for transition and transfer should be reviewed regularly, particularly in the context of an unpredictable chronic condition, because needs change. Ideally the preparation should start well before the process must begin. Discussion of and preparation for transition needs relative Box 3. Determinants of the timing of transition and transfer         

Chronologic age Maturity Current medical status Adherence to therapy Independence in health care Self-advocacy skills Preparation Readiness of the young person Availability of an appropriate adult specialist

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to disease remission (if possible) and transfer should not be implemented during an ‘‘active’’ phase of the disease.

Who is involved in transition? The key player in the process of transition is the young person. One of the basic tenets of a transitional care program is that it is inclusive of the family, not exclusive. The potential, positive, affirming role of the family must never be forgotten in the attempts to engender increasing adolescent independence. Family connectedness, family role models, family concern for the well-being of the child, and autonomy at home are factors identified as fostering resilience in children and they should be encouraged and affirmed [17], especially during adolescence and transition. Conversely, lack of parental support at this time has been associated with negative outcomes (eg, greater nonadherence to medication) [18]. Just as young persons with chronic conditions are negotiating the tasks and transitions detailed previously, their parents must negotiate the transition from being a parent of a dependent child with a chronic illness to a parent of an independent young adult with a chronic illness. This transition is not always easy. The challenge of negotiating the appropriate extent of parental involvement is an integral component of adolescent health, whatever the specialty. Parental overprotectiveness has been reported in several studies of adolescents with transplants [6,19 – 21]. Durst et al [6] reported that parental overprotectiveness remained an ongoing challenge for adolescents with cystic fibrosis after lung transplant, despite the patient’s age and the time since transplantation. Overprotective parenting was also one reason given by young adult survivors on the EDTA registry for unemployment status [19]. One origin of this protectiveness lies in the continuous balancing of the risks of infection and rejection versus the benefits of living a normal life. Often parent and adolescent views differ on each side of this debate. Health care professionals must be aware of this ‘‘executive role’’ of the parent when communicating with young people and ensure that it does not marginalize the young person and hamper the development of a successful relationship between the health care provider and the young person [22]. With this in mind, parents also need a preparation period for transition and transfer. Programs should support parents in building an understanding of adolescent development in the context of chronic illness, their own important, dynamic role in the process, and advice regarding negotiation of boundaries and the resources available within the hospital and the local community. Parents can be encouraged to involve their son or daughter in the decision-making process from an early age to ensure attainment of functional living skills and development of autonomy and self-advocacy skills. The recent US collegiate consensus statement on health care transitions stated that one of the critical steps to ensuring successful transition is identifying a health care professional for each young person who is responsible for planning and care coordination [5]. The key worker role also has been highlighted by other authors [23].

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Other key players in transition include the multidisciplinary transplant team in the pediatric and adult transplant units and the primary health care team. Health care professionals cannot work in isolation from the other professionals, and networks that impact young people with chronic conditions and other key players include members of education services (including careers and vocational rehabilitation), social services, and voluntary organizations that may provide dedicated youth support workers or provide liaison between pediatric and adult support groups.

Where should transition take place? Various models for transition have been reported [24] and largely depend on local resources, geographic variables, and the type of health service provision in the particular country. Transition models include a single-step model from a pediatric to an adult clinic, an intermediary step of either a transition clinic or a specific adolescent clinic, or two intermediary steps of adolescent clinic to young adult clinic, then finally adult care. Scal et al [25] identified 126 interdisciplinary transition programs in the United States for young adults with various chronic conditions, 62% of which were condition specific or subspecialty based and 38% of which were generic, the latter recognizing that many issues that face adolescents with chronic illness are generic. Transition models also may be centered on primary, secondary, or tertiary care, although few primary care models were identified in the US-based study [25]. The programs were mostly problem oriented, with few based on health promotion [25]. Finally, where pediatric and adult specialties exist within the same hospital site, transition models can be single-site models, compared with the more practically challenging split-site models required by stand-alone pediatric hospitals.

Key elements of a transitional care program The key elements of successful transitional care recently were proposed and are incorporated into Box 4. In keeping with the concept that transition is a process, a preparation period and education program for young persons and their parents are key elements of a transitional care program. A policy on approximate timing of events during the transitional process is useful in acknowledging the importance of flexibility. Hospital policies may be age or education based (ie, at age 16 or on completion of secondary or high school) and may require review because rigid enforcement of age-related policies may be detrimental to successful transition for the individual patient. Coordination of transition and eventual transfer is integral to the success of the process, as is an interested and capable adult service that is willing to continue the transitional process in adult care. Establishing a local network of interested and committed professionals is vital for the success of any transitional care program. Adequate administrative support for transitional care must not be underestimated, especially in the preparation, updates, and distribution

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Box 4. Key elements of a successful transitional care              

Orientation that is future focused and flexible Identification of key person for each individual patient Transition policy agreed upon by all members of the multidisciplinary team and target adult services Flexible policy on timing of events with anticipation of change Training program for pediatric and adult team members Written health care transition plan by age 14 created with young person and family with regular review and update Preparation period for patient and parent Education program for patient and parent Fostering personal and medical independence and creative problem solving Network of relevant local agencies and target adult services Administrative support, including provision of medical summary that is portable and accessible Liaison personnel in pediatric and adult teams Ensuring primary and preventive care (eg, guidelines for adolescent prevention) Ensuring affordable continuous health insurance coverage for all young people with special health care needs throughout adolescence and adulthood

of medical summaries to appropriate parties. This support facilitates effective communication among all professionals involved in the transition process, which is integral to successful transition. Key liaison personnel who can bridge the gap between the pediatric and adult service for the patient on an individual basis and for the multidisciplinary teams are useful, particularly in split-site models (eg, the nurse-led team in the generic U Special Kids program at the University of Minnesota) [26]. It is unlikely that there is a universal transition prescription for all transplant recipients, and each is likely to be an individualized plan that varies among patients, diseases, and centers. Some of the key transitional care issues beyond management of the disease and transplant are discussed below. Disease education If a young person has had a primary disease since early childhood, much of the initial disease education may have been primarily directed to the parents. Disease education must be taught and retaught, acknowledging the changing cognitive development of growing children. Issues irrelevant at the age of 9 may be major concerns by the age of 15 years to a young person with a chronic illness. The use of age-appropriate literature and a skilled play worker or teacher is invaluable in

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helping young people to understand and accept difficult issues, such as having a dead person’s organ or facing a lifetime of medical monitoring and medication. Having a full understanding of their illness and being involved in medical decisions was rated as important by more than two thirds (69%) of young adult survivors of a pediatric dialysis and transplantation program; it was rated as the most helpful coping strategy overall by 36% [27]. If adolescents are still at the concrete operational stage of cognitive development rather than the more adult abstract stage, that information must be considered by professionals who provide disease education for such young people. One of two requirements for successful transition identified in a recent study of transition was an understanding of and an ability of the young person to describe the signs and symptoms that require urgent medical attention. Appropriate literature addressing this is vital as is easy access to medical care, the latter which may be more daunting in an adult unit from the young persons perspective [3]. Information regarding drugs should extend beyond importance of adherence, side-effect profile, and monitoring and include rationale, benefits, and risks. Generic health education Generic health issues must be borne in mind, especially as many adult healthpromoting behaviors become established during adolescence. Despite anticipatory guidance being integral in adolescent health, not many of the transition programs identified in a US study were health-promotion based [25]. A delay in onset of risktaking behaviors has been observed in teenagers with cystic fibrosis and sickle cell disease [28], which suggests that the provision of anticipatory guidance for such behaviors is important for pediatric and adult health care providers. Adolescents with chronic illness report more age-related concerns than their healthy peers: acne, alcohol and drug use, periods, headaches, anxiety, contraception, insomnia, worry about height and weight, and sexual health [29]. It is important to ensure the patient that someone in the extended health care team is addressing these. A useful acronym for use in clinic is: H Home E Education, exercise A Activities, alcohol, affect D Drugs/cigarettes, diet, dental care S Sleep, sexual health, suicide which starts with the easy topics and opens the door for more sensitive questions later. The Bright Futures Guidelines [30] or the guidelines for adolescent prevention provide a strong foundation for focusing on typical adolescent issues [31]. Sexual health In the study mentioned previously, one of the requirements for successful transition is a young person’s understanding of the implications of the condition

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and treatments on sexual and reproductive health [3]. Unfortunately, the greatest gap between importance and physician effectiveness reported in this study was in this area [3]. Chronically ill adolescents are reported to be as sexually active as their healthy peers [32]. Chronic illnesses or their therapy, however, may cause delayed puberty, and many of the drugs frequently used in transplantation are teratogenic or affect fertility. Discussions about sexual health must not be limited to matters of fertility and teratogenicity, however. Although they are as sexually active as their healthy peers, young people with chronic illnesses have been reported to be at increased risk of negative outcomes of such behavior (eg, sexually transmitted infections and sexual abuse) [32]. Sexually transmitted infections are of particular concern if a patient remains on immunosuppression. Approximately half of young adult renal survivors said they would have welcomed some counseling or advice about sexual matters or relationships, including contraception, fertility, and pregnancy [27]. For young girls, specific advice from a gynecologist who is trained in managing contraception and pregnancy in patients on immunosuppression is particularly useful. Substance misuse Health risk behaviors, such as smoking and alcohol and drug use, have been reported to be as common in adolescents with chronic illness or disability as in the general population [28,33,34]. Cigarette smoking has generic and specific importance, with premature arteriosclerosis, hyperlipidemia, and osteoporosis being recognized as long-term morbidities of transplantation, and simple primary preventive measures should not be ignored. A history of substance misuse has been reported in young people who are nonadherent with medication and is an important (albeit at times difficult) aspect of history taking [18]. It is important to highlight the importance of sensible behavior (eg, liver transplant recipients may drink alcohol with their peers in moderation). General exercise Greater levels of exercise are associated with well-being and long-term functioning in patients with chronic conditions [35] and are encouraged when feasible, particularly in the light of the concerns of the morbidity of the inactivity of today’s youth generally. A further issue is the importance of weight-bearing exercise for young people on steroid therapy because of the risk of premature osteoporosis after transplant [36]. In the context of chronic illness, many health care professionals who have been involved with a young person since early childhood may find such discussions awkward and are a key educational objective in transitional care training programs (see later discussion). Pediatricians who usually see younger patients may not appreciate that even preadolescents and young adolescents have specific health concerns and are already involved in risky behaviors [37]. Britto et al [38] highlighted the nature of some of the barriers to appropriate counseling of such behaviors among adolescents with chronic illness. These barriers included availa-

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bility of time, discomfort of the doctor with the subject area, ambivalence of the doctor to the role, and the perceived lack of applicability. Croft and Asmussen [39] reported that parents of healthy adolescents believed doctors were the appropriate experts to assist in preventing negative risk behaviors. They also reported that parents believed that doctors lacked communication skills with their teenage children and seemed uncomfortable when discussing personal topics such as sexual behavior. To consider discussing subjects such as sexual activity and alcohol use in the clinic requires preparation of the patient and family. Such consultations require settings that are conducive to confidentiality, physician comfort, good interagency relationships (counseling), and making young persons feel confident in the professional. Seeing young persons independently from parents often provides the conducive space for such conversations and confidences, as does continuity of the same professional over consecutive visits. Sometimes offers of such time and space are not taken up at the first visit but rather at a subsequent visit, when patients feel more confident with the professional. Problem-solving, ‘‘open model’’ approaches, negotiating, and communication skills are all part of this education process. The role of peer educators is an exciting development in this area. Care also must be taken not to assume heterosexuality in discussions regarding sexual health, and homosexuality issues may need to be considered in this age group. Cultural and religious sensitivity in the area of sexual health and alcohol and drug use must be remembered and respected by the multidisciplinary team. Self-advocacy issues Self-advocacy skills are a key element of transition. Such skills are useful throughout a lifetime. The focus of self-advocacy skill training is on strengths, capacities, and opportunities rather than limitations or deficits, the latter focus being typical of the traditional medical model. Aspects of self-advocacy in the health care include being seen independent from parents by health providers, a full understanding of the illness, and involvement in decision making, self-medication, and adherence. The health care setting is a safe and often familiar area to practice self-advocacy skills, such as communication skills, independent living skills, and accessing health service, which are in turn important for success in independent living and the world of work. Seeing the young person independently from the parent helps provide the privacy for such discussions of generic health concerns, such as sexual health and alcohol use, with the assurance of confidentiality. In a study of adolescents in primary care, confidentiality was their major priority when surveyed as to the most important attributes of an adolescent friendly practice [40]. Of concern, Cheng et al [41] reported that 25% of young people would forgo medical care if confidentiality were not ensured. Young people are not routinely seen independently in adolescent hospital-based clinics, however [33,38,43], which is in contrast to their ‘‘healthy peers.’’ In primary health care, young people in the United Kingdom on average go to the

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general practitioner or family doctor independently by age 14 to 15 years [44]. In another study, 50% of 15-year-old individuals (male > female) did so [45]. Independent visits can be difficult to contemplate for young persons and their parents. Preparation and planning are vital for success. For example, at age 11to 12 years the concept is introduced ‘‘ in a year or so, you may feel able to come in to see the doctor on your own for part or all of each visit. . .’’ At future visits they can practice taking a lead in the consultation, remembering their medication, preparing lists of questions, and making their own appointments. By the age of 13 or 14 young persons and their parents then feel ready to be seen independently for at least part of future consultations. It is important to remember that none of us is truly independent and our aim for these young people should be one of shared management and optimizing their interdependence (eg, allowing the young person to choose who is involved with the consultation) [46]. The development of autonomy and the maintenance of an interdependent relationship with one’s parents are equally important for young people and not mutually exclusive. Anyone who cares for adolescents should be aware of the legislation of decision making in this age group in his or her country. One always should aim for parallel consent—consent from young persons and parents/guardians—even when the young persons can make decisions without parental consent during adolescence. Early involvement in decision making is important for all young people with a chronic illness or disability, and simple acknowledgments of this, for example, by co-signing consent forms for surgical procedures, are important messages for young persons and their parents. Other psychosocial issues Coping with teasing or bullying and disclosure issues are important issues to address with young persons during adolescence and transition. Transplant recipients may be particularly vulnerable because of their altered appearance from disease or medication or because of time lost from school. Disclosure is an important life-long issue, whether it refers to disclosing details of the chronic condition or therapy to a friend, significant other, or potential employer. Exploring and developing coping strategies for disclosure with a health care professional can help young persons gain in confidence in this arena. Psychosocial issues may vary with the primary diagnosis. For example, adolescents with cystic fibrosis and transplants do not seem to have reduced self-esteem, unlike pediatric kidney transplant recipients [6]. Burker et al [47] suggested that patients with different types of lung disease require different psychosocial services as they await transplant, with patients who have had disease since birth faring better than patients with later onset disease. Vocational issues Despite the tremendous success story of transplantation in terms of life expectancy, lower levels of employment have been reported in adult survivors of

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a pediatric dialysis and transplant program [27]. Unemployment was associated with lower educational performance [27], which in turn has been reported to be related to poorer self-esteem [48]. Increased school absence is another contributory factor reported in some chronic illnesses [49]. Lower levels of employment also have been reported in JIA, but in contrast, unemployment did not correlate with educational achievement [50]. When Reynolds et al [27] studied the effect of the increased unemployment in the renal transplant patients, they reported that it was not associated with increased work- or income-related stress compared with controls. The authors postulated that this result was caused by the early stage of their working lives or careers, low or realistic expectations, or supportive employers. In a study of 100 adolescents with chronic illness or physical disabilities, the lack of career maturity and work experience of the young persons was related to their parents’ view that the mean age for first work experience should be older than 16, the earliest permitted school leaving age in the United Kingdom [51]. This result is compared with reports of 50% healthy 13-year-old people who are involved in work experience outside their home [52]. Parental expectations for their children with chronic illness or disability are important areas to address during the transition. Teachers also may have lower expectations for sick children such that academic achievements are seen to be less important than for healthy children, with less encouragement and emphasis being placed on achieving a higher level [53]. Prospective studies are needed to determine the cause of unemployment in young people after transplantation. One explanation for the disparities may be related to the multifactorial concept of vocational readiness in chronic illness. Vocational readiness has been described by vocational rehabilitation specialists in North America [54,55], and several centers have established programs of vocational counseling and career development specifically for young people with chronic illnesses (eg, the Adolescent Employment Readiness Center, Children’s National Medical Center, Washington DC). Vocational readiness is not only related to educational achievement but also to prior work experience, expectations of young persons, their families, and their health care professionals, psychological factors (eg, self-esteem) [48], extent of knowledge about career services and community resources, and society’s attitudes toward disability. These aspects must be considered by health care professionals, teachers, and careers counselors of young people with chronic illnesses. Data from a national UK study of what adolescents with a wide range of chronic illnesses want reported early and appropriate career counseling [56]. Young people with chronic illnesses are not different from their peers in these matters. Job security and future employment are included in the top five concerns of healthy 15- to 16-year-old persons in the United Kingdom [57]. Asking young persons with transplants what they would like to do when they leave school is an important message, however vague the answer. It is a message that conveys a future beyond the pediatric clinic. Information needs of teachers must be addressed. It is important for health care professionals to explore with young persons, their families, and their teachers the impact of a chronic illness or disability in specific areas with respect to the school

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day: education, environmental considerations, medical needs, and activities of daily living. This process also should take place in preparation for the move from secondary to further education or employment [58]. Discussions with young persons and their families always should emphasize strengths rather than limitations and aim for inclusion rather than exclusion. Self-advocacy and involvement in decision making are as important in the school setting as in the health care setting. Independence in daily living The first ‘‘work’’ experiences of children are often within the context of the family with household chores. Long-term studies have shown that early incorporation of a child with disabilities into household chores is key for fostering competence and responsibility [59]. Patterson and Blum [17] reported that involvement in household chores was one of several factors associated with resilience in young people with disabilities. Being able to drive a car enhances a young person’s independence. In the United Kingdom, certain young people in receipt of high-level disability living allowance can learn to drive at age 16, 1 year before their healthy peers. Independence in managing illness should be fostered from an early age. Many voluntary organizations provide log books or folders for young people to record health information or medication changes. There are modern electronic gadgets to remind patients of the timing of medication and record compliance. Adherence issues In any discussion regarding nonadherence in adolescents, it is important to reflect on what young people with chronic diseases have to face every day. They often face long-term therapeutic regimens. They often must continue medication even when they feel well. Many drug regimens also require regular monitoring in accordance with the course of the disease. All of these factors potentially lead to restrictions on leisure time, personal freedom, spontaneity, and peer interactions. Nonadherent behavior may be the only control mechanism open to the young person or may be a simple wish to be heard and take an active role in the decisionmaking process. Self-medication is an important aspect of becoming an independent young adult, but it must be seen in the context of shared decision making, self-care, and self-management. Experimentation is a normal task of adolescent development and may be practiced by the self-medicating adolescent, but in the posttransplantation period nonadherence can be associated with morbidity and even mortality of transplant recipients [60,61]. Doctors assume that poor disease control reflects poor adherence, although there is evidence that this assumption is often false [62,63]. It is important to acknowledge that adolescents may be differentially adherent to different parts of their regimen (ie, they take some treatments faithfully and refuse to take others at all).

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Rather than being ‘‘nonadherent,’’ young people are often faithfully adherent to a regimen of their own choosing. This is why exploration of young people’s health goals is central to improving control of chronic conditions. It is important to decriminalize nonadherence in the clinic setting and rather than ask ‘‘have you been taking your tablets every day?’’ ask ‘‘when was the last time you forgot to take your medication?’’ In this way you acknowledge nonadherence as the norm and work with the young person to find ways to improve. Health beliefs, previous experiences (first or second hand), disease duration, reality factors in terms of interrelationships with the team members, and maturity should be explored [64,65]. One of the common misunderstandings in dealing with nonadherence is that explanation about the rationale of therapy suffices. Demonstrating how young persons can become active partners in self-management is imperative, and strategies such as contracting and encouraging them to take control can facilitate this process. Finally, the quality of the relationship between health care professionals and young persons—the therapeutic alliance—is an important, yet often underestimated, determinant of adherence. Failure to develop a trusting relationship with a physician was reported to be associated with nonadherence in a sample of renal transplant recipients [66], and training needs in the area must be recognized [67]. Peer support Conventional approaches to promote emotional well-being in young people with chronic illness or disability often include referral to psychology services. Peer support may be another means of promoting well-being for such young people and as such represent another critical component of any program designed to promote successful transition of youth with special health needs from adolescents to independence and adulthood [68]. Peer support has been reported as an important component of psychosocial management of adolescents with end-stage renal disease after renal transplantation [68]. The Chronic Illness Peer Support program is another such program developed in Australia that aims to promote positive adjustment to chronic illness by bringing together young people with various chronic conditions who face similar circumstances [69]. Peer-led programs in school sex education have been reported to produce behavioral changes that lead to health benefits [70]. Peer education programs within the context of transplantation programs also may have similar benefit.

Training requirements for professionals involved in transitional care In the United States, Healthy People 2010 established the goal that all physicians who provide primary or subspecialty care to young people with special health care needs have the knowledge and skills to facilitate that process [71]. Professionals in pediatric and adult teams must be aware of the pressures on all adolescents with and without chronic illnesses and become skilled at identifying teenagers’ own agendas. They must become confident in dealing with adolescent

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health issues and be proactive in reaching out to adolescents. Whereas teenagers may underestimate the value of experience, adults also may underestimate teenagers’ ability to resolve their own problems. Adolescence is a time when young people want to be heard but may not be sure of how they feel or how to express themselves. They also may doubt that they will even be heard, especially against the more assertive voices of parents and professionals. Ensuring time and space and contact with professionals who have appropriate listening skills to detect such ‘‘hidden agendas’’ [72] is a key aspect of development of transitional care services. In a study of physicians involved in transition, the gaps between importance and their own perceptions of their effectiveness at addressing transitional care issues suggest the need for additional training [3]. Studies have reported that only approximately one third of physicians and pediatricians actually like working with adolescents [73], and only one third actually had interest in adolescent care [74]. Training needs in adolescent health care of pediatricians and adult physicians have been highlighted by several authors [74 –77], specifically for clinicians involved with young people with chronic conditions [3,78]. Adult physicians must be trained in the comprehensive, developmental approach of adolescent health rather than their more traditional system or disease-specific approach. Conversely, pediatricians must be trained in adolescent health care, especially the psychosocial and behavioral issues. The development of imaginative interdisciplinary shared learning approaches that involve pediatric and adult care providers would enhance effective collaboration, nurture professional sensitivity to the psychosocial issues of chronic illness, and ultimately lead to quality, transitional care for all young people with special health needs.

Potential barriers to successful transition Unfortunately, various barriers to transition can be identified. Young persons Young persons may have a long and close relationship with the pediatric team since disease onset, with whom they saw through their transplant, and whom they are reluctant to let go. They may feel safe with the familiar and scared of the unknown—a new hospital or a new team. This fear is only accentuated by virtue of often unpredictable, uncertain conditions. These young people also may be less mature than their peers, more dependent on their parents, and nonadherent with their therapy. They may still have ‘‘pediatric’’ medical problems, such as pubertal delay and growth retardation, the management of which may be unfamiliar to adult teams, not to mention their primary diagnoses. The family of young persons The family of young persons may have a similarly close relationship with the pediatric team and have little confidence in the adult team, and they may not

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understand the importance of age-appropriate care for adults. The family may be overprotective of a dependent young person and may resist the attempts of the health care team to enhance the self-advocacy of their child if not adequately prepared [22]. Their own negative personal experiences of adult health care also may make them reluctant to leave the pediatric health care team. Scal et al [3] reported that although family and adolescent resistance were significant barriers to health transitions, they were surmountable, unlike the problems of institutional support. The pediatric team The pediatric team also may not be confident in the adult team in the management of conditions that have important differences from their adult counterparts. They may enjoy the comfort of long-term clinic attendees and postpone the transition and transfer process. The pediatric team must acknowledge the potential intensity of relationships in pediatric medicine and facilitate the farewell process when young persons eventually transfer to adult care, because difficulties in this process can make it difficult for young persons to build new relationships and establish trust in the adult sector. The adult team There may be no experienced adult team in late effects of transplantation in childhood, or the adult team may have no confidence or training in managing childhood-onset or congenital disease. They may assume such diseases are the same as their adult counterparts and forget the differences in disease manifestations and impact of childhood-onset disease. They also may believe that pediatric care is too paternalistic, have higher expectations for learning, personal choice, self-care, and independent follow-up, and be reluctant to acknowledge the process of transition. They may be less interdisciplinary and more fragmented than their pediatric counterparts. Many young adults find it difficult to create a relationship with the new team and fail to attend regularly. Shared clinics and young adult clinics are important in ensuring smooth transition. Other barriers Barriers of lack of planning, time, and geography also cannot be ignored. Many so-called ‘‘adolescent issues’’ are true for all ages, however, such as involvement in decision making, disease education, and independence. Differences in delivery must be acknowledged, such as variations in team working between units. Time allocation for outpatient visits and continuity of professionals between hospital visits may vary between pediatric and adult units [42]. Young persons and their families must be informed of these differences and acquire the skills to negotiate the transfer and ongoing adult care. A visit to the adult unit and a key liaison member of staff are useful in this regard.

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Scal et al [3] identified problems of institutional support (eg, hospital cut-off age and the inability to find an adult primary care provider) as significant ratelimiting steps in developing an organized transition plan. The barrier of inadequate financing is familiar in many countries. A recent comparative study of a United Kingdom-based generic community-based young adult team versus ad hoc services highlighted that such patient-centered multidisciplinary services were no more expensive and actually improved participation in society for young people with disabilities [79]. In insurance-based health services as in the United States, young people and their families must be prepared for the realities of health care funding because this age group is more vulnerable because of age, life opportunities, and complex need. The complexities of the current issues in the United States have been summarized recently [80]. Many of the barriers detailed previously are attitudinal, and all persons involved in transitional care must examine their personal or professional strengths, unexplored biases, and ultimate goals before active involvement in a transitional care program. There must be an acknowledgment of differences in practice philosophies and style between pediatric and adult teams with the necessary planning, preparation and coordination. Health care professionals must learn how to shift the expert model and become enablers of young people and their families. They must encourage more horizontal than vertical communication in clinics from an early age and start to alter institutions to enable self-advocacy whatever the age of the patients.

The future Much of the progress in transitional care has been made in the world of pediatric and adolescent health. We need comparable development at the adultoriented end of the continuum so that adult-oriented health care is as desirable as what the young person has experienced during childhood and so transition becomes the normal, expected, planned, and desired outcome of pediatric care. Transitional care in the field of transplantation is an area ripe for further research. Close collaboration of professionals who work in pediatrics, adolescent health, and adult medicine with young people and individuals with other chronic conditions hopefully will provide an evidence base for the answers to these questions in the future.

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Appendix 1. Examples of Transitional Care Websites 

http://depts.washington.edu/healthtr/ The adolescent health transition project at the University of Washington



www.communityinclusion.org/transition Transitional care resources from the Children’s Hospital Boston and Massachusetts Partnership for transition 

http://chs.ky.gov/commissionkids/transition.htm Site includes life maps: developmentally appropriate transition questionnaires that allow families and young people to identify their individual needs and encourage staff to provide family-centered care that focuses on the individual needs of the young person 

http://hctransitions.ichp.edu/ US- based transition website

Appendix 2. Other Transitional Care Resources ONTRAC Transition Program British Columbia Children’s Hospital Room2 D20 4480 Oak Street Vancouver, BC, Canada 3V4 Tel: (604) 875-3472 National Center for Youth with Disabilities University of Minnesota PO Box 721 420 Delaware Street SE Minneapolis, MN 55455, USA Tel: (612) 626-2931

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Adolescent Employment Readiness Center Children’s National Medical Center 111 Michigan Avenue NW Washington, DC 20010-2970 USA Tel: (202) 884-3203; Fax: (202) 884-3385

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