The importance of transition to adult health care for young people with chronic conditions is increasingly recognized. Ensuring effective engagement with adult services for adolescents and young-adult solid-organ transplant recipients is as critical for immediate graft survival as it is for their future health and well-being. This article (1) examines the definitions of adolescence and emerging adulthood and some of the challenges of these phases of life, (2) discusses elements that may influence motivation and engagement and enhance communication and adherence for adolescents and young adults, (3) highlights important areas in education, vocational planning, and quality of life for transplant recipients, (4) reviews tasks and challenges during the transition, and (5) provides specific transition recommendations, for both transplant health care professionals and for primary care providers practicing outside transplant centers.
The path from childhood to adulthood is marked by a series of milestones. In the developed world, this ranges from the simple counting of years that are celebrated with birthday parties, to a series of educational milestones (such as commencement and completion of primary school, completion of secondary education, part-time work, and decision making about future work), to various social milestones (such as one’s first boyfriend or girlfriend, leaving home), and to legal milestones (such as being able to vote and drive a car). For the growing number of young people with complex health conditions, transfer from pediatric to adult health care services is an event that equally deserves celebration by young people, parents, and health professionals alike, for the myriad achievements that are signified by this important event. As with increasing education and social participation, attainment of the milestone of transfer to adult services signals a beginning rather than an end point, with expectations of growing participation and competence. Thus the event of transfer to adult focused services is but part of the continuum of the process that constitutes transition to adult health care.
The importance of transition to adult health care for young people with chronic conditions is increasingly recognized by policy statements from various organizations. These policy statements highlight that the goal of transitional care is to maximize lifelong functioning and potential through the provision of high-quality, developmentally appropriate health care services that continue uninterrupted as the individual moves from adolescence to adulthood.
Although successful transfer to adult focused health care is important for young people with a range of complex or severe chronic conditions, ensuring effective engagement with adult services for adolescents and young adult solid-organ transplant recipients is arguably as critical for immediate graft survival as it is for their future health and well-being. Extrapolating from ANZDATA (Australia and New Zealand Dialysis and Transplant Registry) and the Organ Procurement and Transplantation Network registry reports, there are at least 7000 young people aged 15 to 24 years with functioning solid-organ transplants (kidney, liver, heart, and lung) in Australia, New Zealand, the United States, and Canada alone. Many of these patients would not have survived into adult life 2 decades ago. Now they are reaching adulthood in ever-increasing numbers. Some have underlying diseases or conditions that may be unfamiliar to adult physicians because patients with these conditions were previously far less likely to survive to adulthood. Some may have physical, social, or cognitive challenges, either directly related to their underlying disease or indirectly as a consequence of living with such a serious condition. Some may transfer to large well-resourced specialized adult transplant centers, whereas others may transfer to community-based specialists, with more variable support structures.
The Pediatric Committee of the American Society of Transplantation recognizes the importance of transition across the adolescent and young adult years and has called for greater focus by pediatric and adult teams on the tasks required to support successful transfer to and engagement with adult services. Promoting acquisition of developmentally appropriate self-management skills and competencies by young people as they mature through adolescence into early adult life (as embodied in the term transition to adult health care) is equally critical.
There is encouraging evidence from certain disease groups, such as cystic fibrosis, that the risk of major disruption to regular health care can be appropriately managed if it is carefully supported and resourced. However, the situation is more concerning for other conditions. For example, studies of young people with type 1 diabetes report that 24% to 69% are lost to follow-up after transfer to adult health care. In the United Kingdom, Kipps and colleagues describe that 94% of young people were attending clinic at least 6 monthly in the 2 years before transfer, declining to 57% 2 years after transfer to adult health care. The attendance rate varied from 29% to 71%, which suggests the importance of local factors in influencing clinic attendance.
There have been few studies of young people with transplants to know how well they transfer to adult services and what effect this has on their health, well-being and transplant organ function. A report by Watson was concerning, with 8 of 20 kidney allografts failing within 36 months of young people transferring to adult services. Particularly worrisome was that 7 of these failures were unexpected. A recent Australian study of all pediatric renal transplant recipients transferring to adult health care was more reassuring, with 10 of 11 regularly receiving medical care within adult services 1 year after transfer, and none of the 11 having an unexpected clinical course. Clinic attendance reduced from 73% in the year before transfer to 57% during the year after transfer to adult focused care, raising questions about continuing engagement with adult focused care. This finding is consistent with an English study that followed up 16 of 28 kidney transplant recipients and showed a higher nonattendance rate at clinic in the year after transfer to adult services. A small retrospective report of medication adherence in recently transitioned liver transplant recipients showed increased variability in tacrolimus trough level following transfer to adult care. More disquieting are studies that suggest low levels of satisfaction with the process of transfer to adult health care. For example, Remorino and Taylor recorded that 9 of 11 young people reported overall satisfaction with their transfer as being only “OK,” and the remaining 2 described it as having gone “badly” and “really badly.” Also concerning were statements by 9 of 10 young Australians that they did not feel involved in transition planning. In a qualitative study about the process of transition for 17 organ transplant recipients (9 renal, 5 liver, 4 heart), McCurdy and colleagues emphatically highlighted the greater need for investment in transition planning, with young people generally feeling poorly prepared to face the adult health care system, which they belatedly appreciated as being very different to pediatric services.
In light of these concerns this review explores the following broad areas: What do we want to achieve as adolescent transplant recipients move to adult health care? How do we reach that goal? Is the theory of emerging adulthood important in our concept of transition? What are the challenges during the process of transition? The bulk of the tasks required for young people to achieve successful transition to adult services occur during childhood and adolescence, and these are our primary focus. Thus this article (1) examines the definitions of adolescence and emerging adulthood and some of the challenges of these phases of life, including neurocognitive influences on decision making and behavior, (2) discusses elements that may influence motivation and engagement and enhance communication and adherence for adolescents and young adults, (3) highlights important areas in education, vocational planning, and quality of life (QOL) for transplant recipients, (4) reviews tasks and challenges during navigation of the transition journey, and (5) provides specific transition recommendations, for primary care providers practicing outside transplant centers and for transplant health care professionals.
What do we want to achieve as adolescent solid-organ transplant recipients move to adult health care?
Our health goals include maximizing young people’s potential for longevity and an excellent quality of those lived years, with a minimum of health complications. Developmental goals include optimizing young people’s potential to live as independently and self-sufficiently as they can, and to experience the same educational opportunities, employment possibilities, and social relationships as do their peers. These goals require a multifaceted comprehensive approach beginning early in care and a strong partnership between the health care team, the young person, and their parents or carers, and, increasingly, with schools. They ideally include attention to child and adolescent development, and focus on self-management skills, communication, and sustained attention to educational and social participation.
Adolescence and Emerging Adulthood
Adolescence is the period between childhood and adulthood encompassed by changes in physical, psychological, and social development. It is a time of significant change, associated with greater emotional reactivity and, for a range of reasons, a time of relative vulnerability. In the early twentieth century adolescence was viewed as continuing into the mid-20s. However, the World Health Organization currently defines adolescence as the period between 10 and 19 years (starting from the onset of puberty); the teenage years are defined as spanning the age from 13 to 19 years. Although 18 years is the age of legal majority in most high-income countries, this age does not denote any magical developmental imperative. Turning 18 years does not of itself signify achievement of adult functioning or mark that point when the perceived turbulence of adolescence disappears, rational decisions are consistently made, or risk taking is diminished. In defining youth as the period between 15 and 24 years, the World Health Organization has appreciated the growing capacity for more mature adult functioning beyond the age of legal majority. Similarly, Arnett has used the term “emerging adulthood” to describe the period between 18 and 25 years, in recognition of ongoing maturation and social development. For most adolescents in the high-income world (defined by the World Bank as countries and regions in which the gross national income per capita [2008] is greater than 11,905 US dollars ), adolescence is a period of personal exploration and identity formation, which is still relatively free from major social and financial responsibilities.
The age at which patients typically transfer to adult health care coincides with the time of life when risk behaviors peak. This can be a challenging period for many young people, even in the absence of chronic disease. In the high-income world, the mortality of 15- to 19-year-olds is more than 3 times higher than that of 10- to 14-year-olds, whereas 19- to 24-year-olds have 4 times greater mortality than 10- to 14-year-olds. Rates of substance use and abuse, mental disorders including suicide, and sexual health risks are all greater in young adults than in adolescents. The burden of a serious health condition is an additional stressor, with higher rates of risk behaviors described in adolescents with chronic conditions than in healthy young people. Challenges concerning treatment adherence become more evident in the adolescent and young adult years, as direct parental influence on behavior wanes and patient concerns about side effects of medication evolve. It is perhaps not surprising that young adult and adolescent renal transplant recipients have the highest rates of acute rejection, death-censored graft loss, and chronic rejection leading to graft loss than any other age group. Outcome data for nonrenal organ transplant recipients during emerging adulthood are sparse; however, as with kidney recipients, long-term graft survival is worse for those transplanted during adolescence (age 12–17 years) than during childhood.
Neurocognitive influences on adolescent and young adult decision making and behavior
Physical development antedates emotional maturity; most girls are physically mature by mid-adolescence, although boys are often not fully grown until the older teenage years. Cognitive abilities are also well established by the mid-teenage years. However, the development of emotional regulation, reflective judgment, and thus social maturity lag behind achievement of physical maturity and cognitive skills. Contrary to common belief, young people do not have delusions of invulnerability. Nonetheless, engagement in sensation-seeking activities peaks in adolescence and young adulthood and there is an exaggerated response to certain types of rewards. Emotional and social factors may override more rational cognitive functions, leading to inconsistent choices and potentially dangerous risk taking. These influences continue at least into the mid-20s. On tests of risk perception, sensation seeking, impulsivity, resistance to peer influence, and future orientation, scores are similar at 10 and 15 years of age; differences begin to emerge at age 16 to 17 years, with a progressively increasing level of function up to at least the age of 30 years. The complex interrelated skills of logical reasoning, reflective judgment, and emotional regulation evolve into adulthood.
Advances in neuroimaging, particularly structural and functional magnetic resonance imaging, have led to a greater understanding of the neurobiological basis of these phenomena. Developmental changes in brain structure continue into the third decade of life. The subcortical limbic regions, such as the amygdala and the nucleus accumbens in the basal ganglia, important for emotion and reward seeking, mature early. In contrast, the prefrontal cortex and associated areas, responsible for executive brain functions such as foresight, planning, evaluation of risk and reward, and the capacity to dissociate decision making and strong emotion, are among the last to reach adult levels; moreover, functional connectivity between these 2 regions is delayed. When a young person makes a poor decision in a highly charged emotional or social context, he or she may well know better, and have different decision making in the absence of such influences.
The combination of heightened responsiveness to rewards and immaturity in brain areas for behavioral control may result in adolescents investing more in activities with immediate rather than long-term gains, and help explain their increase in risky decision making and emotional reactivity. Thus there is some biologic basis for the emotional extremes and lack of mature executive planning that can be seen during adolescence and early adulthood.
Adolescent Motivation and Engagement
How adolescents view themselves in the present and into the future is important to their life goals, whether in relation to education, work and career, or intimate relationships. Young people do not commonly experience the notion of a future beyond the age of 30 years. However, their goals are essential to their motivation and well-being and a key to understanding their behavior. Although there are many theories of motivation, one with an important effect on health behavior, education, and child rearing is self-determination theory (SDT). SDT emphasizes the importance of 3 basic psychological needs: autonomy, competence, and relatedness. Autonomy involves experiencing a sense of choice and willingness rather than being controlled or pressured. Competence describes a feeling of self-confidence or self-efficacy, whereas relatedness is a sense of belonging, of having connection with others, of shared values and interests, and friendships. Aspects of SDT that are especially pertinent to working with adolescents and to parenting are (1) providing a rationale and explanation for behavioral requests; (2) recognizing the feelings and perspectives of the child or adolescent; (3) offering choices and encouraging initiative; and (4) minimizing the use of controlling techniques. Engagement of adolescents with their health care can be enhanced by clear and consistent goals, a perception of fairness, and participation and collaboration in decision making with the responsible adults in their lives (parents and health care staff). Although peer groups have often been viewed as negative influences during adolescence, the provision of social support and acceptance from peers with chronic disease can also be harnessed positively.
Education
Much success in later life depends on educational achievement. Although many pediatric solid-organ transplant recipients do well academically and socially, a higher proportion have problems with school achievement, compared with the general population, and on reaching adulthood their unemployment rate is higher. Contributing elements include neurocognitive factors as well as the extent of school absence. Children with chronic disease are at risk for experiencing more difficulty in academic areas that build on prerequisite skills and knowledge; this effect is present even after controlling for learning difficulties. Frequent or prolonged school absence may lead children to miss out on key learning opportunities and mastery of core skills required to progress to a more advanced level. Equally critical are, long periods of absence that can make young people feel less confident about returning to school and re-establishing friendships or relationships that may be perceived to, or actually, have moved on. Organ transplant recipients in particular may miss a great deal of school before their transplant because of hospitalizations, frequent clinic visits, and fatigue or general malaise. Those with renal transplants may have additionally endured the burden of long hours of dialysis.
Areas that need to be explored to address these challenges are educational intervention programs (eg, tutoring, teaching of coping skills, peer-mediated supports) and school-reintegration programs for those who have missed prolonged periods of school. A greater focus on coordination between hospital and school settings is also required. At the very least, this should include dissemination of information to teachers about the effects of chronic illnesses and associated treatments which their pupils may be experiencing. It is also important to balance the value of schools being informed with the patient’s need for privacy and confidentiality. Thus, involving young people themselves in what information will be shared with whom is a critical aspect of communication with schools. Early recognition of learning problems or of educational deficits in children with chronic conditions, and ensuring timely remediation, are also likely to lead to greater success. Other measures that may help augment school achievement include a stimulating home learning environment, positive parental role models, and favorable school experiences, such as individual attention to pupils’ needs and giving them a voice in planning the content and evaluation of their learning. Enhancing school engagement may help diminish high school dropout rates; research has shown that students who show a rapid decrease in engagement, or low levels of engagement, at the beginning of adolescence are more likely to drop out, underlining the importance of well-timed intervention.
Health Related Quality of Life in Adolescent and Young Adult Transplant Recipients
Several small studies have investigated the QOL of adolescent transplant recipients and young adults transplanted in childhood, using instruments such as the 36-item Short-form Health Survey Version 2.0 (SF-36v2), the Child Health and Illness Profile, Adolescent Edition (CHIP-AE), and the Child Health Related Quality of Life Self Report Questionnaire (CHQ-CF87). Findings have been inconsistent, possibly because of small samples sizes, with mean scores ranging from similar to the general population to significantly lower in almost every domain. However, questionnaires do not tell the whole story, and qualitative research, which seeks a deeper understanding of patients’ experiences using careful analyses of in-depth interviews, can make important contributions. A recent systematic review of qualitative studies of more than 300 adolescent organ transplant recipients revealed the following information: adolescent patients’ feelings and experiences included a sense of domination by their medical regimens, lowered self-esteem, resentment about feeling different, negative reaction by peers, loss of a sense of belonging, anxiety about rejection and how long their transplants would last, and uncertainty about life expectancy. Some had suicidal thoughts. Some were thankful for the transplant having given them a second chance at life and for the new or restored vitality that it provided. Some desired more independence and felt overprotected by their parents. A wish to set long-term academic and vocational goals was prevalent. However, maintaining schoolwork was often a challenge; extensive school absenteeism caused some to fall behind in their studies, and many felt stressed and overwhelmed as they struggled to make progress and achieve satisfactory grades. This work highlights the complexity and range of developmental issues experienced by young transplant recipients. It should reinforce to physicians, nurses, and other health care workers that our goals for medical stability during transition to adult health care need to be accompanied by support for our young patients’ quests for fulfilling and productive lives.
Communicating with Adolescents
The quality of communication between clinicians and adolescents can affect their understanding of their medical condition, satisfaction with treatment, collaboration, and subsequent appointment keeping. Positive influences on the health dialog include perceptions that the physician is trustworthy and completely honest with the adolescent patient, listens carefully and takes their concerns seriously, is patient-centered rather than condition-focused (eg, interested in the broader effect of their condition on their day-to-day life, particularly in discussing school difficulties or social and emotional problems), seeks permission before asking about personal issues, maintains confidentiality, provides understandable explanations, and involves the adolescent in decision making. Physician willingness to discuss sensitive health topics is also associated with more positive perceptions of care by young people. Adolescents are less likely to be engaged if their visit is brief or if they feel rushed, if they are seeing a health professional whom they have not previously met, or if there is a lack of privacy (including the presence of medical students in the room). Some young people with chronic disease have reported it takes at least 4 to 5 visits before they trust a physician. Support of autonomy and competence is important; adolescents react poorly to the use of coercion, such as scare tactics, or techniques that make them feel badly about themselves. Sometimes parental presence at appointments is supportive and confidence building for adolescents; at other times it may hinder communication, particularly around personal or sensitive topics. A study exploring specialists’ perceptions of the health care preferences of chronically ill adolescents found physicians underestimated the importance of communicating as a friend, being trusted by the adolescent’s parent or guardian, and showing a high level of proficiency in the medical or technical aspects of care (knowledge, experience, and careful clinical assessment) and a welcoming office.
The knowledge, attitudes, and skills that underpin effective communication with young patients are increasingly recognized and taught at undergraduate and postgraduate levels. Skills-based training workshops incorporating interactive role play with simulated patients have led to significant improvement in the efficacy of screening and counseling practices for adolescents by medical students and primary care physicians. For health care teams treating adolescents and young adults with chronic conditions, a stronger focus on developing proficiency in core competencies that enhance engagement and communication with young people and their families may be one strategy to promote better transition to adult health care.
Specific recommendations for transition of pediatric transplant recipients
Tasks for the Pediatric Transplant Team
During the years before transfer, the development of a transition planning document may be a helpful resource to assist young people, families, and health care teams prioritize skill building that will support a successful transition to adult health care. Chronic organ failure (heart, kidney, intestine, liver, or lung), from an early age can be associated with delays in development, intellectual function, or attention deficit/hyperactivity disorders. Emotionally and cognitively challenged children and adolescents need opportunities to develop aptitudes in problem solving, goal setting, and self-advocacy. Even those with significant impairment can usually make simple choices, such as which pill to take first, and perform simple tasks. Box 1 illustrates some critical tasks and milestones that should ideally be achieved before transfer occurs.
- 1.
Understanding of and ability to describe the original cause of their organ failure and need for transplantation
- ○
Initial education may have been primarily provided to their parents; repetition is necessary to ensure they understand their condition
- ○
- 2.
Ownership of their medical information in a concise portable accessible summary
- 3.
Awareness of the long- and short-term implications of the transplant condition on their overall health and other aspects of their life (eg, infection prevention, cancer surveillance, academic and vocational aspirations)
- 4.
Comprehension of the effect of their illness on their sexuality and reproductive health, including
○ The effect of pregnancy on their own well-being
○ The effect of their medications on fertility
○ Any potential teratogenicity of their medications
○ The role of genetic counseling, and genetic risk of their disease recurrence in future offspring, if pertinent to their condition
○ Their own increased susceptibility for sexually transmitted disease
- 5.
Demonstration of a sense of responsibility for their own health care
○ Knowledge of the names (and shapes/colors), indications, and dosages of their transplant and ancillary medications (or carry that information in wallet/purse)
○ Call for their own prescription refills and renewals
○ Prepare their own medication dose boxes, if not done by their pharmacist
○ Independently communicate their health care needs to their providers
○ Know when and how to seek urgent medical attention, including health emergency telephone number(s)
○ Ability to make, keep a calendar of, and follow through with their own health care appointments
○ Understanding of their medical insurance coverage and eligibility requirements
- 6.
Capacity to provide most self-care independently
- 7.
An expressed readiness to move into adult care
A designated transition coordinator can help facilitate the process of transfer to adult health care and ensure that all necessary preparations are made for this event. However as described earlier, assistance with many health care tasks is still commonly required at the time of transfer, for even the most highly functioning young people. At transfer, the patient and family should be provided with a portable concise, up-to-date summary of the patient’s medical history, including medications. The summary should be meaningful and may require special adaptation for those who are cognitively challenged. Thus, it may need to include pictures, tape recordings, and other nonwritten forms of communication. In addition, a detailed health care professional summary, with all significant medical, surgical, and nursing history, relevant laboratory results, pathology reports, imaging results, operative reports, consultation letters, and pertinent psychosocial information should be sent directly to the adult treating team. Areas in need of specific attention should be respectfully communicated to adult providers. When necessary, resolution of guardianship issues should occur before the patient’s 18th birthday.
Preparing the patient’s parents
Parents of chronically ill children may be reluctant to set limits or push their child to do age-appropriate tasks. The pediatric team needs to encourage transplant recipients’ parents to promote their independence and growing capacity for personal, family, and social responsibility. This encouragement might include discussion of participation in age and developmentally appropriate chores at home and after-school activities, including part-time jobs. Discussion also needs to focus on parents progressively involving their sons and daughters in their medical care, such as adherence with medication, appointment scheduling, medication preparation, and calling for prescription refills. Supporting young people to see clinicians by themselves for part of a consultation is another strategy that promotes growing responsibility with health care. These approaches are consistent with models of parenting that are embodied within SDT. They can also be conceptualized as training in leadership in health care, in which parents gradually hand over more health care tasks to young people, who progressively take on greater responsibility. Thus parents can be viewed as transitioning from total caregivers or chief executive officers of care to managers, supervisors, and then consultants, as their children mature and become progressively more autonomous. Parental modeling of healthy lifestyle behaviors can be considered equally fundamental to engagement of young people with health-promoting behaviors.
Helping the pediatric team let go
It can sometimes be difficult for the pediatric team to break the bond of care that has developed over many years with the transplant recipient and his/her family. They may worry that neither the adolescent nor the adult transplant team is ready. Even if not explicitly stated, an attitude of mistrust may be transmitted to the patient and family that will inadvertently create barriers for the new adult providers. These concerns may be diminished by working collaboratively with the adult team, sharing protocols to minimize treatment variation between centers, and assisting adolescent patients to access necessary adult system resources. The development of close affiliations between pediatric and adult transplant centers would clearly assist these processes.
Challenges for the Adult Transplant Team
The adult transplant team may assume the young person is an autonomous adult, who will come prepared with questions, be able to express any concerns, directly discuss treatment plans, and remember rapidly communicated instructions. But, no matter how well prepared, young people still need time to form trusting relationships with their new clinicians and adult health care team, as do their parents. Because adult transplant clinics frequently have a patient load at least 10-fold greater than those of pediatric centers, physician appointments are often shorter; this may delay the opportunity for relationship building. In the absence of a relationship, young people feel less comfortable sharing sensitive or personal issues, and mistakenly believe the adult physician neither understands nor cares.
To minimize these concerns, the pediatric transplant team needs to prepare young people for the changes in practice style and culture between pediatric and adult services. Communication, coordination, and harmonization of approaches can be facilitated through bidirectional information sharing between pediatric and adult transplant colleagues. As with their pediatric confreres, adult site physicians and nurses may need to focus on competency development in communication skills that support engagement and relationship building with adolescents at various developmental levels and on understanding the effect of childhood chronic disease on development. They may also need to develop their skills in the management of childhood causes of end-stage organ failure and congenital diseases, infrequently seen in an adult practice. Ideal adult site resources for transferring pediatric organ recipients would include a dedicated transfer coordinator, nurses and social workers with expertise in adolescent health, and access to reproductive specialists and urologists with proficiency in congenital urologic malformations.
A recent study of internists’ perspectives on transition from pediatric to adult care revealed they had several major concerns, such as lack of training in congenital and childhood onset conditions, the need for superspecialists with expertise in adult manifestations of congenital and pediatric-onset disorders, lack of adolescent training, facing disability or end-of-life issues during youth and early in the relationship, insufficient family involvement, particularly when the patient was not ready for sole health care decision making, lack of resources to meet patients’ psychosocial needs, financial pressures limiting time, and families’ high expectations.
Awareness that although 18- to 24-year-olds may look fully mature, their emotional regulation, risk behaviors, and adherence may differ from older adults, is the key to appreciating the importance of more focused engagement and communication. Specific questioning about the adolescent’s feelings and concerns, and discussion of issues relevant to their lifestyle are important. These issues include sexuality, pregnancy, relationships, substance use, mental health, recreational activities, vocational and educational choices, and health care system expectations. Age-appropriate peer support groups may also be valuable for young adults, whether face to face or electronically facilitated, such as through chat rooms or blogs.
Primary and preventive health care
Partnerships with primary care providers should be established in advance of transfer to adult services, with discussion and clarification of the roles of primary and specialist health services. There should be communication with patients and primary care providers about transplant-specific guidelines for issues such as immunization, dental health, reproductive health care, cancer screening, infection risks of everyday life, and the dangers of risky behaviors, including poor adherence with treatment. General guidelines for primary and preventive care for adolescents and young adults should equally be applied, recognizing that those who have undergone transplantation require more resources and services than others their age.
Enhancing Adherence
Organ transplant recipients need to adhere to lifelong immunosuppressive therapy, often in combination with other complex or demanding treatment regimens. Poor adherence jeopardizes health and QOL and may lead to graft loss, increased health care costs, and untimely death. Nonrenal organ recipients, having no dialysis alternative, are at particular risk. Attention to adherence is a critical aspect of consultations with young people as the effects of poor adherence may not be immediately apparent to health care providers. Moreover, the consequences of poor adherence may sometimes be difficult for adolescents and young adults to appreciate.
For some young people, engaging in risky behaviors, such as binge drinking, casual sex, recreational drug use, or nonadherence with treatment, may be intentional. However, for many, these behaviors are not planned, deliberate, or even expected. Instead they are a reaction to situations, usually social, that were neither sought nor necessarily anticipated. A young person needs the opportunity to think in advance, with a cool head, about the risks and benefits of engaging in an activity, in order to be able to make a rational decision in the heat of the moment. Preparedness can decrease the likelihood of the adverse consequences of succumbing to a passionate moment of opportunity. An interventional technique based on a dual-focus–dual-processing model of adolescent health risk behavior may be effective; it involves approaches that target the logical and emotional aspects of decision making, often using imagery.
An example of this dual process intervention approach in transplant medication adherence involves 2 arms. One arm is presented to the parents and targets the reasoned path. The other arm is presented to the child or adolescent and targets an emotional or social reactive path. The aim of the first arm is to increase parenting skills such as communication with the child and to assist the parent in exploring potentially risky behaviors with their child ahead of time. The goal of the second arm is to help the child or adolescent learn about the consequences of poor adherence in ways that are relevant to their social/emotional decision making. The use of imagery is recommended to help the situation feel more real for the young person, for example through the use of photographs or video clips. Positive imagery might show a healthy transplant recipient doing an enjoyable activity that is feasible because of his or her health (eg, a sports or athletic event); negative imagery might be a graphic depiction of a transplanted organ lost to rejection compared with a healthy one, or a testimonial from a patient who has lost their graft, about the effect this has had on their life.
Adherence is influenced by aspects within individual patients, the range of resources around them that might support adherence behaviors (eg, family, friends, finances) as well as more interactive aspects of patients with the providers and the health care settings. A complementary approach that incorporates an understanding of adolescent development with SDT motivational techniques could help young people develop a sense of personal choice and autonomy in their behavior, rather than feeling controlled, pressured, or coerced. Other techniques include integrating more specific behavioral approaches (eg, use of wristwatch alarms, cell phone messaging), life coaching, and social support strategies (eg, peer support groups). Techniques that may help improve adherence for adolescents and young adults are summarized in Box 2 . Some other aspects of adolescent treatment adherence are discussed in another article elsewhere in this issue.
