Adolescents constitute a significant proportion of pediatric transplant patients, whether they have survived a transplant in early childhood (like most heart and liver recipients) or are transplanted in older childhood or adolescence, such as many renal transplant recipients. Their needs can be significantly different from either children or adults, as they are undergoing a major transformation that involves making educational and vocational decisions and commitments, establishing a new and more equal relationship with their parents, discovering their sexual identity, taking increasing responsibility for their health and creating the moral, philosophic, and ethical perspective that they will carry through their lives. This article discusses adolescent issues in transplantation.
Adolescents constitute a significant proportion of pediatric transplant patients, whether they have survived a transplant in early childhood (like most heart and liver recipients) or are transplanted in older childhood or adolescence, such as many renal transplant recipients. Their needs can be significantly different from either children or adults, as they are undergoing a major transformation that involves making educational and vocational decisions and commitments, establishing a new and more equal relationship with their parents, discovering their sexual identity, taking increasing responsibility for their health and creating the moral, philosophic, and ethical perspective that they will carry through their lives. Research addressing adolescence and transplantation should be an important focus in the future. Adolescent issues identified as research foci at a 2003 pediatric transplant consensus conference include adolescent graft survival, growth and the pubertal hormonal axis, quality of life, adherence, and alterations in drug metabolism. This article discusses adolescent issues in transplantation.
The adolescent interview
Talking with adolescents does not have to be difficult nor particularly time consuming. To lay the groundwork, a discussion of confidentiality and its limits will make it clear what can be kept private and what cannot. This varies between jurisdictions, but confidentiality should not be promised for situations of suicide or homicide risk. Abuse must be reported (again, at varying ages) in most places. When discussing confidentiality, bring up any differences between what you will tell parents, what you will share with the team and what must be charted.
The HEADS acronym has been used to remind the clinician what to discuss. This originally stood for Home, Education, Activities, Drugs and Sex. Over the years other letters have been added: A for affect, D for depression, or S for suicidality; D for diet; S for safety. The authors would also add A for adherence. Questions should be asked in a nonjudgmental fashion and some need to be fairly specific (“What were your grades on your last report card?” as opposed to “How is school?”). Questions about sexuality should use nongendered language (“Are you romantically interested in anyone?” as opposed to “Do you have a boyfriend?”). Younger adolescents tend to be concrete thinkers (see later discussion) and language should be nonambiguous.
Adolescent development
Young people with solid organ transplants are young people first and foremost. Knowledge and expertise in addressing their developmental needs are important for all professionals involved in their care. There is a myth that teens see themselves as immortal and invulnerable but early adolescence is a time when many teens think about death and its permanency. As cognitive ability, knowledge of the world, physical prowess, and communication skills increase, adolescents desire and require increasing autonomy. Children learn what limits they should set for themselves by trying things out (and making mistakes) and by observing the limits that have been placed on them.
Cognitive Development
Although some adults with normal intelligence do not acquire significant abstract thinking skills, most teenagers move from concrete to sophisticated abstract thinking. Concrete thinkers do not see a spectrum of possibilities; things are black or white. As their reality shifts, they see today’s truth as the only one, often surprising health care professionals as they espouse opposite views on sequential visits. This makes it difficult for providers to predict future behavior from current statements. Concrete thinkers have difficulty in deducing rules from their experiences, as each experience seems unique. They can be adherent as long as their situation remains constant, but when decisions have to be made, adherence is more challenging. For example, an adolescent may take his morning medication without reminder, but if he sleeps in, he might not take it as he has missed the appointed time. Difficulties can also arise when literal interpretations of health care advice are incorrect.
Adolescent brain development is an active process, finishing in the third decade of life. There is no literature on brain development in transplant recipients or in others with growth or pubertal delay. Executive functions, the last to fully develop, include organization, planning, self-regulation, selective attention, and inhibition. We expect young people to plan ahead for clinic appointments, arrange to be away from school to attend these appointments, focus on the dialog with their provider, and to restrain the impulse to miss medication. These are difficult tasks without significant executive function. This is not to say that we should have low expectations; rather we should develop strategies to aid them in developing these skills while their increasing brain maturity makes the tasks easier.
Cognitive function in pediatric transplant recipients has been examined in the pre- and posttransplant periods. Pretransplant, cognitive function was equally affected in young children awaiting heart or heart-lung transplants, those unlisted with congenital heart disease, and those awaiting bone marrow transplantation compared with healthy controls. Almost half of tested heart transplant recipients showed significant delays in cognitive functioning, although most had scores in the average range for reading and spelling. Almost 25% of this sample had cognitive deficits pretransplant.
Adolescent transplant recipients may have cognitive delays because of complications in the neonatal period, poor oxygenation before transplant, strokes, or other events surrounding transplantation, or as part of the syndrome that led to the need for transplant. It is key to remember that these young people are not equally delayed in all areas. Labeling them as being at a certain mental age can be a barrier to their development because of the provider’s lower expectations.
Puberty
Children and teens who are experiencing organ failure often have delayed puberty. Puberty and menarche have been showed to be delayed in girls who received liver or renal transplants prepubertally. (However, 1 study of 25 cardiac transplant patients showed normal onset and progression of puberty after transplant). Adolescents may be reluctant to bring this up with the transplant team, because of embarrassment, worries that it is a sign of a major problem, confidentiality concerns, or because they doubt the expertise of the transplant team on pubertal issues. Sexual maturation rating (SMR, also known as Tanner Staging) should be offered every 6 months in younger teens and they should be kept up to date (without their parents) on where they are in their pubertal maturation. In a girl with no evidence of pubertal development who is at least 1 year posttransplant and who is more than 14 years old, investigations can include measurements of luteinizing hormone, follicle-stimulating hormone, estradiol, progesterone, and testosterone. Size of the ovaries on pelvic ultrasound can help determine if there is internal pubertal development.
Gynecomastia, common at SMR III in male adolescents, can also be caused by several drugs, including digoxin and isoniazid, as well as by marijuana. If gynecomastia is noted, the adolescent should be reassured that this is common, that it will get better, and that they are not changing gender. They should be counseled not to squeeze the breast tissue in an attempt to make it go away, as this will stimulate growth. Boys may also be concerned about the onset of nocturnal emission, or wet dreams. As they are unlikely to bring it up, it can be part of any discussion about puberty.
Boys and girls may have missed sexual health education at school, either because they are excused from gym or because they missed school on the day that it took place. Printed resources regarding puberty can be made available to address the questions of patients who are prepubertal or in the early stages of this development.
Emotional Development
Adolescence is a time when the experience, recognition and naming of emotions and emotional nuances is developing. As adolescents observe themselves experiencing their emotions, they learn how to behave in response to their emotions. Their expression of these observed feelings may seem dramatic or even histrionic. Adolescents need to believe that their feelings are being respected. If they are told what they are or are not (or should be) feeling, they may believe that their feelings are not valid. They will have difficulty expressing their needs to providers and might make decisions based on what they think the team wants them to say.
Adolescents develop their ability to interpret other people’s emotions after they have developed their sense of their own feelings. It has been shown that they often misread facial expressions and body language, thinking that an adult is angry when he or she is actually sad.
Identity Development
Children learn to be like their parents and then spend their adolescence figuring out how they are different from them. Parental limit setting is an important part of this process. If limits are not clear, they may try many behaviors to learn when they have gone too far. If the limits are rigid and arbitrary, they may be punished for even minor infractions, which can interfere with learning about what their own personal limits are. Although experimentation with these boundaries is typically done in middle adolescence, transplant recipients may be delayed in this because of increased dependence on their parents or parental overprotection. Optimal identity formation must incorporate their health status and the transplant. If this is not part of their identity, they are unlikely to take care of their organ, but if it is the dominant part, they are unable to recognize all the other ways in which they are unique.
The transplant team can have a positive influence on development. Adolescent recipients have access to more role models than most healthy teens and it is a testament to this that they often express the desire to become doctors, nurses, paramedics, social workers, or dieticians.
Adolescents who feel good about themselves are likely to incorporate this into their identity and will have increased self-confidence to move through the process of identity formation. When they acquire skills or use their abilities they tend to have a sense of themselves as globally more able.
Autonomy
In some cultures interdependence and communal values are tantamount; in the Western world, autonomy is the defining characteristic of adulthood. In either situation, some level of autonomy is expected, and parents give their children increasing levels of responsibility to foster this. Young people with chronic health conditions may see themselves as permanently dependent on parents, caregivers, medications, and technology, and may not recognize that they can achieve independence. Because they have always been cared for, these teenagers may assume that their care is the responsibility of others and that their role is to be helped rather than to be an active member of the health care team. Parents may be tempted to turn over all responsibility for medication or appointment making all at once, but a graduated approach works better, with the support of a transplant team that talks directly to the young person, sets specific stepwise goals around medical autonomy, and supports the young person as he or she inevitably makes mistakes.
Adolescent development
Young people with solid organ transplants are young people first and foremost. Knowledge and expertise in addressing their developmental needs are important for all professionals involved in their care. There is a myth that teens see themselves as immortal and invulnerable but early adolescence is a time when many teens think about death and its permanency. As cognitive ability, knowledge of the world, physical prowess, and communication skills increase, adolescents desire and require increasing autonomy. Children learn what limits they should set for themselves by trying things out (and making mistakes) and by observing the limits that have been placed on them.
Cognitive Development
Although some adults with normal intelligence do not acquire significant abstract thinking skills, most teenagers move from concrete to sophisticated abstract thinking. Concrete thinkers do not see a spectrum of possibilities; things are black or white. As their reality shifts, they see today’s truth as the only one, often surprising health care professionals as they espouse opposite views on sequential visits. This makes it difficult for providers to predict future behavior from current statements. Concrete thinkers have difficulty in deducing rules from their experiences, as each experience seems unique. They can be adherent as long as their situation remains constant, but when decisions have to be made, adherence is more challenging. For example, an adolescent may take his morning medication without reminder, but if he sleeps in, he might not take it as he has missed the appointed time. Difficulties can also arise when literal interpretations of health care advice are incorrect.
Adolescent brain development is an active process, finishing in the third decade of life. There is no literature on brain development in transplant recipients or in others with growth or pubertal delay. Executive functions, the last to fully develop, include organization, planning, self-regulation, selective attention, and inhibition. We expect young people to plan ahead for clinic appointments, arrange to be away from school to attend these appointments, focus on the dialog with their provider, and to restrain the impulse to miss medication. These are difficult tasks without significant executive function. This is not to say that we should have low expectations; rather we should develop strategies to aid them in developing these skills while their increasing brain maturity makes the tasks easier.
Cognitive function in pediatric transplant recipients has been examined in the pre- and posttransplant periods. Pretransplant, cognitive function was equally affected in young children awaiting heart or heart-lung transplants, those unlisted with congenital heart disease, and those awaiting bone marrow transplantation compared with healthy controls. Almost half of tested heart transplant recipients showed significant delays in cognitive functioning, although most had scores in the average range for reading and spelling. Almost 25% of this sample had cognitive deficits pretransplant.
Adolescent transplant recipients may have cognitive delays because of complications in the neonatal period, poor oxygenation before transplant, strokes, or other events surrounding transplantation, or as part of the syndrome that led to the need for transplant. It is key to remember that these young people are not equally delayed in all areas. Labeling them as being at a certain mental age can be a barrier to their development because of the provider’s lower expectations.
Puberty
Children and teens who are experiencing organ failure often have delayed puberty. Puberty and menarche have been showed to be delayed in girls who received liver or renal transplants prepubertally. (However, 1 study of 25 cardiac transplant patients showed normal onset and progression of puberty after transplant). Adolescents may be reluctant to bring this up with the transplant team, because of embarrassment, worries that it is a sign of a major problem, confidentiality concerns, or because they doubt the expertise of the transplant team on pubertal issues. Sexual maturation rating (SMR, also known as Tanner Staging) should be offered every 6 months in younger teens and they should be kept up to date (without their parents) on where they are in their pubertal maturation. In a girl with no evidence of pubertal development who is at least 1 year posttransplant and who is more than 14 years old, investigations can include measurements of luteinizing hormone, follicle-stimulating hormone, estradiol, progesterone, and testosterone. Size of the ovaries on pelvic ultrasound can help determine if there is internal pubertal development.
Gynecomastia, common at SMR III in male adolescents, can also be caused by several drugs, including digoxin and isoniazid, as well as by marijuana. If gynecomastia is noted, the adolescent should be reassured that this is common, that it will get better, and that they are not changing gender. They should be counseled not to squeeze the breast tissue in an attempt to make it go away, as this will stimulate growth. Boys may also be concerned about the onset of nocturnal emission, or wet dreams. As they are unlikely to bring it up, it can be part of any discussion about puberty.
Boys and girls may have missed sexual health education at school, either because they are excused from gym or because they missed school on the day that it took place. Printed resources regarding puberty can be made available to address the questions of patients who are prepubertal or in the early stages of this development.
Emotional Development
Adolescence is a time when the experience, recognition and naming of emotions and emotional nuances is developing. As adolescents observe themselves experiencing their emotions, they learn how to behave in response to their emotions. Their expression of these observed feelings may seem dramatic or even histrionic. Adolescents need to believe that their feelings are being respected. If they are told what they are or are not (or should be) feeling, they may believe that their feelings are not valid. They will have difficulty expressing their needs to providers and might make decisions based on what they think the team wants them to say.
Adolescents develop their ability to interpret other people’s emotions after they have developed their sense of their own feelings. It has been shown that they often misread facial expressions and body language, thinking that an adult is angry when he or she is actually sad.
Identity Development
Children learn to be like their parents and then spend their adolescence figuring out how they are different from them. Parental limit setting is an important part of this process. If limits are not clear, they may try many behaviors to learn when they have gone too far. If the limits are rigid and arbitrary, they may be punished for even minor infractions, which can interfere with learning about what their own personal limits are. Although experimentation with these boundaries is typically done in middle adolescence, transplant recipients may be delayed in this because of increased dependence on their parents or parental overprotection. Optimal identity formation must incorporate their health status and the transplant. If this is not part of their identity, they are unlikely to take care of their organ, but if it is the dominant part, they are unable to recognize all the other ways in which they are unique.
The transplant team can have a positive influence on development. Adolescent recipients have access to more role models than most healthy teens and it is a testament to this that they often express the desire to become doctors, nurses, paramedics, social workers, or dieticians.
Adolescents who feel good about themselves are likely to incorporate this into their identity and will have increased self-confidence to move through the process of identity formation. When they acquire skills or use their abilities they tend to have a sense of themselves as globally more able.
Autonomy
In some cultures interdependence and communal values are tantamount; in the Western world, autonomy is the defining characteristic of adulthood. In either situation, some level of autonomy is expected, and parents give their children increasing levels of responsibility to foster this. Young people with chronic health conditions may see themselves as permanently dependent on parents, caregivers, medications, and technology, and may not recognize that they can achieve independence. Because they have always been cared for, these teenagers may assume that their care is the responsibility of others and that their role is to be helped rather than to be an active member of the health care team. Parents may be tempted to turn over all responsibility for medication or appointment making all at once, but a graduated approach works better, with the support of a transplant team that talks directly to the young person, sets specific stepwise goals around medical autonomy, and supports the young person as he or she inevitably makes mistakes.
Pretransplant issues
Evaluation for transplant in the adolescent can be complicated by the young person’s assumptions about the purpose of the psychosocial interview. Although the team uses this evaluation to assess motivation, capacity to consent, current adherence problems, and to delineate problems that might arise after transplant, the young person may think that the only reason for this interview is to see if they are psychologically suitable for transplant and do what they can to be seen as normal, mentally healthy, and optimistic. On the other hand, an ambivalent teen may present themselves as less stable, in an unconscious attempt to be rejected as a transplant candidate.
It has been shown that children and teens who have psychological problems before transplant have more hospitalizations after transplant, therefore an assessment of the adolescent on their own is a crucial step in the transplant evaluation. Despite this, there is great variability between programs in terms of who does these assessments and how in-depth they are.
The assessment can be augmented with standardized psychiatric screening tools, such as the Beck Depression Inventory and the Minnesota Multiphasic Personality Inventory-Adolescent Version. One crucial thing to come out of this assessment is a determination of the teen’s capacity to consent to treatment. Although laws regarding consent vary widely throughout the world, capacity to consent should still be determined in all adolescents. It would be a mistake to force a capable teen who does not want a transplant into having one, even though someone else is legally empowered to give consent.
A teen is capable of consenting if they understand their illness and understand the treatment, including having a reasonable idea of the negative and positive aspects of having or refusing the treatment. In general, the younger the child and the more complicated the disease and the treatment, the less likely they are to meet capacity criteria.
Adolescent and family expectations may become apparent during this assessment. As the teen describes the procedure and the positives and negatives of transplant, it may become clear that some or all family members have unreasonable expectations, or that they foresee a poor outcome but believe that they have no other choices.
The pretransplant assessment should also include questions about social supports. Extended family and friends are both important, but a young person may not want their healthy friends to know they are having a transplant. They may get more support from other teens they have met at the hospital or at functions held by disease-related foundations or agencies.
It is difficult to assess motivation and readiness for transplant as neither of these are fixed entities. Motivation fluctuates with mood, life events, and feelings of health or ill health. A young person’s interest in transplant may be a statement of their relationship with their parents; if there is unresolved conflict, they may take the opposite point of view from the parents on everything. Enthusiasm or its absence for school, music, or work cannot be generalized to apply to their approach to transplant.
Asking a teen when the ideal time would be for a transplant can be illuminating. An otherwise enthusiastic adolescent may tell you that they will be ready in 6 months. A teen who says, “tomorrow,” may be very ready or may see it as inevitable and just want to get it over with.
Adolescents and Waiting
The offer to list a teen for transplant may precipitate a realization of the seriousness of the situation. A previously cheerful, motivated adolescent may now be exhibiting anger (directed against parents or the transplant team), tearfulness, or silence. Those who are ambivalent or scared may show the most anger. Those with conduct disorders also react this way, having a narrow range of emotional options available to them. Concrete thinkers will focus on the practical details. If told average waiting times, they will interpret this as a promise that they will not have to wait any longer, so offering ranges (and adding a few months to your upper estimate) is a better approach. Almost everyone regresses in their cognitive abilities when stressed or overwhelmed, so a teen who has impressed the team with their abstract thinking skills may suddenly be reduced to asking very simple questions or making naive statements.
Waiting for transplant is particularly challenging for adolescents. A lack of ability to comprehend cause and effect, poor skills at seeing how a generalization might apply to a specific situation, poor impulse control, and less than optimal ability to pay attention can all have an effect. On the other hand, they might be better able to put the upcoming transplant out of their head and get on with life to their best ability. Adolescents often appreciate practical advice about dealing with false alarms, what to have ready to take to the hospital, and asking a friend to text, twitter, or e-mail friends when the call comes.
The waiting period can be used to address underlying psychological issues. Adolescents who have had transplants have said they wanted more warning in the pretransplant period about postoperative pain, catheters, and the intensive care unit experience.
Welcoming the adolescent’s friends into the process of waiting will help them get the support they need and will set the stage for continued involvement after transplant. This can be as simple as bringing a friend to wait with them for appointments. The adolescent who wants the process kept secret should know that when they are suddenly out of school, many people will think they have gone to drug rehab or an eating disorder program.
Immediate posttransplant issues
Many posttransplant issues are similar throughout the lifespan, such as pain, communicating while intubated, and medical issues. However, it is important for pediatric practitioners to remember that the older the adolescent, the more they will resemble an adult, and similarly for adult practitioners to keep in mind that their younger patients may seem like children in some ways.
In the absence of major complications, adolescents recover (and perceive themselves as recovering) more quickly than adults, but more slowly than younger children. Some adult sequelae (such as edema after cardiac transplant) are much more common in older adolescents than children. These young people can be much harder to mobilize than children. Adolescents may be apprehensive about leaving the protection of a critical care unit (small children are not), but are often more comfortable than their parents or an adult posttransplant.
Although the adolescent, like everyone else, is likely to regress in their thinking and behavior in the immediate postoperative period, they still have needs for control and independence. Any choices they can be given can help fill this need. Medication teaching, which should start early, must include the adolescent.
The reality of transplant is also starting to become clear. Despite what they are told before transplant, many expect to wake up feeling all better because of their new organ. In cases where the donor is a parent, they will be unable to fill their role as an important support to the adolescent during this time. When both are able to talk on the phone or communicate by computer, they should be given the opportunity to do so.
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