Adolescent Medicine
0025--7125/90 $0.00
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Life Beyond Pediatrics Transition of Chronically III Adolescents from Pediatric to Adult Health Care Systems Daniel V. Schidlow, MD, * and Stanley B. Fiel, MDt
The passage to adult life from adolescence is a time of internal turmoil. The growing adolescent must be able to progressively shed the sheltered environment of childhood days and achieve self-reliance and independent living as a decision maker (Table 1). Under normal circumstances, this process is painful for the healthiest of individuals. For chronically ill youth, transition to adult life is fraught with difficulties, among which the transfer from pediatric to adult health care systems stands out as a particularly complex problem. Our goals as caregivers should be to help individuals achieve their optimum potential. The growth, development, and social adaptation of the chronically ill child and adolescent should be as "normal" as possible, i. e., it should try to duplicate that of a healthy individual. Much controversy has been generated over the years as to who should care for the "growing" individual with chronic disease. As therapies have improved, the health care system has witnessed a progressive increase in survival rates. Over the last two decades, many individuals with so-called "childhood disorders" have achieved mature life and are living into relatively advanced age. 9 Slowly but steadily, the ranks of the chronically ill have been swelling in numbers of younger patients over the age of 18 years who either continue to be cared for by pediatric teams or find themselves adrift in search of appropriate fulfillment of their care needs. Normal development and social adaptation for the adolescent should result in independent living and a change, somewhere along the line, from the pediatric to the adult health care system. More commonly, however, older adolescents and young adults do not seek or receive much medical care on a regular basis. 7 The health care system has not been properly prepared to deal with this population, possibly because of the perception that their needs are not as great or as important as those of individuals at the other end of the continuum of life. Adolescents, in *Professor of Pediatrics, Temple University School of Medicine; Chief, Section of Pulmonary Medicine; and Director, Pediatric Pulmonary and Cystic Fibrosis Center, St. Christopher's Hospital for Children, Philadelphia, Pennsylvania tProfessor of Medicine, Temple University School of Medicine; Associate Chief, Section of Pulmonary Medicine; and Director, Adult Cystic Fibrosis Program, Temple University Hospital, Philadelphia, Pennsylvania Partially funded by grant #SPC-945-713, Bureau of Maternal and Child Health, and a Center Grant from the Cystic Fibrosis Foundation
Medical Clinics of North America-Vo!' 74, No. 5, September 1990
1113
1114
DANIEL
V. SCIlIDLOW AND STANLEY B. FIEL
Table 1. Life Changes Inherent in Normal Transition
from Childhood to Adult Life
CHILD/ADOLESCENT
Parental home Shared decision making Dependency in Insurance Economics Transportation Main activity: school Pediatric team (pediatrician)
ADULT
Independent living Self-reliance Meaningful relationships
Higher education or job; social integration Adult team (family practitioneriinternist)
general, are probably under-represented as consumers of health care. This is particularly true of the adolescent and young adult who has not yet been integrated into the work force and has no insurance, or those individuals who, by virtue of their age or social situation, are unable to receive proper coverage. In addition, chronically ill adolescents often use the subspecialty service as their source of primary care and specialty care. '2 As they tend to draw away from their specialty clinics, their primary care also becomes seriously compromised. Pediatricians have been among the professionals most concerned with this issue, and the various statements by the American Academy of Pediatrics over the years reflect increasing concern about the quality of health services for the older adolescent. It is of interest that in 1938, the age limits of pediatrics practice, as defined by the American Academy, were 16 to 18 years. 2 This age limit was redefined in 1972 to include individuals up to 21 years of age. 2 The latest statement of the Academy prolongs indefinitely the limit into adulthood for individuals with chronic diseases, stating that "there are special circumstances (e.g., a chronic illness or disability) in which, if mutually agreeable to the pediatrician, the patient, and, when appropriate, the patient's family, the services of the pediatrician may continue to be the optimal source of health care past the age of 21 years." This statement acknowledges a void in services for adolescents and young adults with chronic illness, and it accepts that a pediatrician is the one called upon to fulfill the caregiving role for this population. The issues that arise, however, are whether this model is the one that the health care system as a whole should be looking toward as a goal and, if so, whether it does fulfill the needs of this already adult population. Another issue centers on the appropriate setting and framework in which the care should take place. As care givers, we could create a situation in which the message is "grow-up, become independent," and at the same time patients are kept in an environment that is not necessarily conducive to the achievement of these goals.
TRANSITION: BASIC TENETS It is our opinion that the health care system should develop the means to care for these older individuals in an environment different from the pediatric setting. We also believe that there should be a transfer of care, at some point, from pediatric to adult health care services (i.e., internal medicine). In our work to achieve a successful transfer for our patients with cystic fibrosis, we based our actions on the following basic beliefs: 1. Many of the chronic congenital or genetic diseases are no longer exclusively "childhood diseases."
1115
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2. Independence and self-sufficiency are desirable goals for adolescents with "pediatric diseases"· 3. The pediatric environment is not necessarily conducive to the achievement of independence for young adult patients. 4. The best care is that done in a multidisciplinary team approach. 5. Patients have the ability to adapt to new health care systems. 6. Given proper conditions, adult care givers are able to provide the quality care these individuals need. 7. Transition should be smooth; change should occur as part of a process and should not be imposed. 8. There needs to be a commitment on the part of both the leaders and members of adult and pediatric teams to the concept of transition and to excellence in care. 9. Ongoing collaboration and learning are essential parts of the process for all those involved in care of the maturing young adult. 10. There is no substitute for knowledge of the patient and commitment to care. These conditions are necessary to earn the patient's confidence.
OBSTACLES TO TRANSITION The obstacles to transition reside in the families, the pediatric care giver, the adult care giver, the health care team, and in the patient himself. We have attempted to summarize them in Table 2. The Patient Chronic illness fosters dependent behavior. Lack of support systems, lack of trust in care givers, severe illness, or poor self-image may hinder the willingness of a given patient to be exposed to a new set of circumstances and to have to establish a new set of relationships. Psychopathology, extreme immaturity, or severe disability interfere seriously with the readiness of individuals to transfer care, as does general lack of adherence to treatment regimens. The Family Transition must be a family affair. The family must be included in the process for it to be successful, because the family constitutes the strongest support system Table 2. Obstacles to Transition from Pediatric to Adult Health Care Systems The Patient Dependent behavior Immaturity Severe illness or disability Psychopathology Lack of support systems Lack of trust in care givers Poor adherence to treatment regimens The Family Excessive need for control Emotional dependency Psychopathology Parenting styles leading to overprotection Heightened perception of disease severity Lack of trust in caregivers Mistaken perception of potential survival
The Pediatric Caregiver Economic concerns and concerns about program Emotional bonds with patient and family Comfort with the status quo Perception of own skills as caregiver of adults Perception of potential survival of patients Distrust of adult care giver Ambivalence towards transition and transfer of care The Adult Caregivers Economic concerns Lack of understanding of congenital disease Lack of familiaritv with disease entities Heightened perc~ption of care demands Lack of institutional commitment
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for most individuals. Certainly, parenting styles, ability to "let go," emotional dependency, and excessive need for control will mediate against this smooth process. These perceptions about severity of disease, or potential for survival, may lead to overprotective behavior and unwillingness to foster independence and change. Some family members can actually sabotage the process in spite of patient cooperation. The Pediatric Care giver One of the most difficult obstacles for transition is a negative attitude on the part of the pediatric caregiver. In general, the opposition or reluctance of pediatricians to agree to transition is based on a variety of assumptions, emotions, and economic issues. Many pediatric care givers have seen these patients grow from early life and have a strong emotional attachment; therefore, they view the patient's departure to a new source of services with some apprehension. Their feelings are not unlike those of parents who are strongly attached to their children and feel the need to protect them. Many feel that adults can be appropriately cared for in a pediatric environment and do not see any limitations in their own abilities to care for adults with specific disease entities, because they view themselves as experts in that disease, regardless of a patient's age. The paucity of adult-based services only reinforces the notion that the best care giver for these patients is the pediatrician. There is no clear incentive for many pediatric caregivers to seek out counterparts in the adult health care setting and to work with them in developing a specialized system of care for their own patients. There is a distinct risk of negative economic consequences, particularly for hospital-based programs, and an added risk of losing some patient-based support for research and other care activities that establish economic leverage with hospital administrations. Some may still, subconsciously, view their patients as having a short life span and perceive transition and transfer of care as unnecessary. Among the most powerful forces against transition are the negative economic consequences of losing a patient base and the very strong emotional ties between pediatric caregivers and their patients. The Adult Caregiver Many adult caregivers, on the other hand, are unfamiliar with "pediatric diseases" and feel uncomfortable spending time acquiring experience in the care of these patients. Many care givers have heightened perceptions of the demands of care and perceive this patient population as having a negative economic impact on their practices. Team care is not necessarily a widespread model in adult chronic disease management, and it is costly and difficult to achieve in many adult health care settings.
TRANSITION: THE EXPERIENCE In spite of all the difficulties, many models have been developed successfully. Successful transition is more likely to occur for patients who have conditions that internists are familiar with managing, such as diabetes mellitus, renal disease, oncologic diseases, sickle cell anemia, or asthma. Transition has been particularly difficult for patients with, for example, cystic fibrosis, congenital heart disease, and spina bifida. 3. 4 Cameron6 has identified three categories of children with kidney disease who may need eventual transfer to an adult unit: those requiring direct transfer owing to the severity of their condition (advanced renal failure, dialysis, and so forth), those requiring less urgent care (relapsing nephrosis, metabolic defects, and so on),
LIFE BEYOND PEDIATRICS
1117
and those who may develop problems later in life after an apparently resolved problem (i.e., acute glomerulonephritis, treated obstructive uropathy, and so forth). The author points out that in addition to the practical problems in transferring adolescents, there is also the potential for loss to follow-up and the need to minimize trauma to patients and families. He also states that the actual mechanics of transfer depend greatly on the local circumstances and the people involved. Obviously, whether the pediatric unit is in a facility contiguous to the adult unit or in a remote location will determine the ability to share or streamline resources and communicate with ease. Salmi et al l3 reported successful control of adolescents with diabetes mellitus in an adult unit. An interesting aspect of their experience was that male patients and those with a disease with a more recent onset (shorter course) seemed to adapt and achieve better control than female patients and those with a long disease history. Our experience in transferring patients with cystic fibrosis from a children's hospital to an adult facility has been similar in that it became clear that the patients who were sicker and needed more in-depth support and nurturing tended to have more problems with adaptation than those with milder disease. In general, physical or emotional instability mediates against successful transfer of care. Delengowski and Dugan-Jordan R have reported that adolescents with oncologic diseases can receive satisfactory care in adult units. They stressed, however, the need to educate the staff in adult units about developmental issues of adolescents and the need to involve parents in the care process. A problem identified by these authors was the impact of the young age of these seriously ill patients on the nursing staff. Feelings of overidentification with patients, sympathy, frustration, and anger emerged as causes of decreased therapeutic effectiveness and conflict.
TRANSITION: THE PROCESS The process of transition usually originates with the pediatrician's perception that his or her adult patients are "ripe" for care in an adult setting. As Cameron 6 points out, the first essential step is to perceive that there is a problem or a need. Once the decision to pursue a transition program has been made, the next step is to identifY a skilled adult specialist with an interest in pursuing the task. Many an effort has aborted at this stage because of frustration, lack of interest, or dearth of individuals in the adult setting willing to take on the task. At the same time, the pediatric team must examine its attitudes toward transition and develop a growing commitment to the process, while seeking support from the corresponding administrative and academic authorities. None of these endeavors is easy. The decision to give up the care of a segment of patients is not easy for all the reasons that have been discussed previously. There is a need to overcome the usual ambivalence that this decision will generate. The pediatric team must convince itself of the benefits to the patient (and to the team itself) of the transfer of care. It is important that the process of self-examination start even before active negotiations with an adult counterpart take place, in order to minimize negative feelings and potential sabotage of the program. In the identification process, it is easiest to look at individuals within the same institution (i. e., medical schools, hospitals). It is best to seek individuals who might view the opportunity to care for this segment of patients as a positive step in their career, from a clinical or research perspective. The potential for recognition and academic growth will be important incentives to spark interest in this kind of project. Exploration of the economics involved and reassurance that the program will result in financial improvement or, at the very least, in no financial
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V. SCIIIDLOW AND STANLEY B. FIEL
loss, are certainly important. Furthermore, it is important that institutional support be assured, in order to avoid the eventuality that the budding program hinge on the presenee of one isolated person. Section chiefs, administrators, and department chairmen will need some reassurance about the economic health of such a program and, ideally, should be involved in the process from the start as a means of securing their ongoing support. The ensuing steps involve the development of a training program for the adult caregivers that could include meetings, rotations of trainees through the pediatric subspecialty program, and, at all times, an ongoing dialogue between the pediatric and adult caregivers. Educational programs for patients, aimed at discussion of their needs as well as assessment of their readiness, need to take place. In our program, we started "transition clinics" in which patients were seen initially by both the pediatric and adult care givers and then by the adult care giver in a pediatric site; eventually, the patient moved physically from the pediatric to the adult institution. In institutions in which pediatric and adult programs are under the same roof, physical separation may not be needed, but days that are specifically targeted for adolescents and adults are necessary. Although there are several drawbacks to the physical separation of the pediatric and adult institutions (i. e., difficulty in sharing resources, more difficult communication), the fact that the patient leaves the institution becomes somewhat of a "rite of passage." This rite of passage may serve as an incentive for the patient to try to "stick it out" and to make more of an effort to develop a working relationship with the adult team. In institutions in whieh there is no physical separation (other than in-patient wards and different floors), patients may be more prone to play one team against another, go back and forth between teams, etc. As we indicated before, each program will need to respond to the geographic and administrative characteristics of the institution where it occurs. In our program at this point, 75 patients with cystic fibrosis are followed exclusively by the adult health care team. A structure has been established to assure ongoing communication (Fig. 1). Socialization among the members of the adult and pediatric teams and, ideally, "plenary meetings" of both teams should be encouraged, even though they generally are not easy to accomplish. An important aspect of the process is the transfer of important information from the pediatric to the adult caregivers. The creation of pertinent medical summary transfer forms, verbal communication, and handling of medical records are essential. Patients will feel very insecure if they perceive that their new "caregivers" may not be up-todate on all aspects of their care. Once the adult physician is identified, the most diffieult task is the building of an appropriate care giving team. An essential member, and first in the recruitment list, is the nurse-coordinator. This individual serves as interteam liaison, facilitates communication among team members, and is responsible for patient-management plans. Traditionally, nursecoordinators have been the backbone of chronic care programs. The team care model, however, may not fit within the framework of the existing structures; it is also financially onerous. Ylost individuals in administrative positions will not be favorably inclined to underwrite even portions of a team without assurances that their investment will be recovered. Thus, the leadership skills of the adult care giver are put to the test from the very beginning. After recruiting takes place, the development of a cohesive team and the education of this team need to occur with the help of the pediatric team, which, in turn, must act as unselfishly as possible. Again, ongoing communication among the leadership as well as among the team members across discipline lines (i. e., nurse with nurse, dietician with dietician, and so forth) is essential. For those individuals interested in developing a transition program, a useful source is the recently edited manual for transition of chronically ill youth. 5
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Medical Director (Pediatric)
Medical Director (Adult)
I
I
Transition Management Committee (Both M.D. Directors and Nurse Coordinators)
,
,
SW Nut PT Nurse
Nurse SW Nut PT
Figure 1. Team structure of transaction program. PT: Physical (respiratory) therapists; Nut: Nutritionist; SW: Social worker.
TRANSITION: ISSUES FOR THE FUTURE The road to transition is being built every day, albeit with difficulty. The care of the chronically ill individual requires a multiplicity of resources and economic support. Multidisciplinary care, education, insurance coverage, and empowerment of the chronically handicapped are all serious issues that have not been resolved. The future needs to bring an increasing involvement of state and federal agencies, as well as insurance carriers, in order to improve the medical insurance coverage for the disabled young adult. 11 Community-based care and home care need to be expanded. Transition is difficult but not impossible. When successfully achieved, it becomes a source of professional pride and patient satisfaction.
REFERENCES 1. Age limits of pediatrics. Pediatrics 81:736, 1988 2. Age limits of pediatrics. Pediatrics 49,463, 1972 3. Alien HD: The adolescent and young adult with heart disease. Am J Dis Child 139:976, 1985 4. Barbero CJ: Leaving the pediatrician for the internist. Ann Intern Med 96:673, 1982 5. Bronheim S, Fiel S, Schidlow DV, et al: Crossings: A Manual for Transition of Chronically
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6. 7. 8. 9. 10. 11. 12. 13.
DANIEL
V. SCHIDLOW AND STANLEY B. FIEL
III Youth to Adult Health Care. Washington, DC, Georgetown University Child Development Center, 1988 Cameron JS: The continued care of pediatric patients with renal disease into adult life. Am J Kidney Dis 6:91-95, 1985 Carroll G, Massarelli E, Otzoomer A, et al: Adolescents with chronic disease: Are they receiving comprehensive health care? J Adolesc Health Care 4:261-265, 1983 Delengowski A, Dugan-Jordan M: Care of the adolescent cancer patient on an adult medical oncology unit. Semin Oncol Nurs 2:95-103, 1986 Gortmaker SL, Sappenfield W: Chronic childhood disorders: prevalence and impact. Pediatr Clin North Am 31:3-18, 1984 Magrab PR, Millar HEC (eds): Growing up and getting medical care: Youth with special health care needs. Surgeon General's Conference-Conference Proceedings. Washington, DC, Georgetown University Child Development Center, March 1989 Newacheck PW: Adolescents with special health needs: Prevalence, severity and access to health services. Pediatrics 84(5):872-881, 1989 Palfrey JS, Levy JC, Gilber KL: Use of primary care facilities by patients attending specialty clinics. Pediatrics 63:567-572, 1980 Salmi J, Huupponen T, Oksa H, et al: Metabolic control in adolescent insulin-dependent diabetics referred from pediatric to adult clinic. Ann Clin Res 18:84-87, 1986
Address reprint requests to Daniel V. Schidlow, MD Section of Pulmonary Medicine St. Christopher's Hospital for Children 5th and Lehigh Avenues Philadelphia, PA 19133
0025--7125/90 $0.00
+
.20
Life Beyond Pediatrics Transition of Chronically III Adolescents from Pediatric to Adult Health Care Systems Daniel V. Schidlow, MD, * and Stanley B. Fiel, MDt
The passage to adult life from adolescence is a time of internal turmoil. The growing adolescent must be able to progressively shed the sheltered environment of childhood days and achieve self-reliance and independent living as a decision maker (Table 1). Under normal circumstances, this process is painful for the healthiest of individuals. For chronically ill youth, transition to adult life is fraught with difficulties, among which the transfer from pediatric to adult health care systems stands out as a particularly complex problem. Our goals as caregivers should be to help individuals achieve their optimum potential. The growth, development, and social adaptation of the chronically ill child and adolescent should be as "normal" as possible, i. e., it should try to duplicate that of a healthy individual. Much controversy has been generated over the years as to who should care for the "growing" individual with chronic disease. As therapies have improved, the health care system has witnessed a progressive increase in survival rates. Over the last two decades, many individuals with so-called "childhood disorders" have achieved mature life and are living into relatively advanced age. 9 Slowly but steadily, the ranks of the chronically ill have been swelling in numbers of younger patients over the age of 18 years who either continue to be cared for by pediatric teams or find themselves adrift in search of appropriate fulfillment of their care needs. Normal development and social adaptation for the adolescent should result in independent living and a change, somewhere along the line, from the pediatric to the adult health care system. More commonly, however, older adolescents and young adults do not seek or receive much medical care on a regular basis. 7 The health care system has not been properly prepared to deal with this population, possibly because of the perception that their needs are not as great or as important as those of individuals at the other end of the continuum of life. Adolescents, in *Professor of Pediatrics, Temple University School of Medicine; Chief, Section of Pulmonary Medicine; and Director, Pediatric Pulmonary and Cystic Fibrosis Center, St. Christopher's Hospital for Children, Philadelphia, Pennsylvania tProfessor of Medicine, Temple University School of Medicine; Associate Chief, Section of Pulmonary Medicine; and Director, Adult Cystic Fibrosis Program, Temple University Hospital, Philadelphia, Pennsylvania Partially funded by grant #SPC-945-713, Bureau of Maternal and Child Health, and a Center Grant from the Cystic Fibrosis Foundation
Medical Clinics of North America-Vo!' 74, No. 5, September 1990
1113
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DANIEL
V. SCIlIDLOW AND STANLEY B. FIEL
Table 1. Life Changes Inherent in Normal Transition
from Childhood to Adult Life
CHILD/ADOLESCENT
Parental home Shared decision making Dependency in Insurance Economics Transportation Main activity: school Pediatric team (pediatrician)
ADULT
Independent living Self-reliance Meaningful relationships
Higher education or job; social integration Adult team (family practitioneriinternist)
general, are probably under-represented as consumers of health care. This is particularly true of the adolescent and young adult who has not yet been integrated into the work force and has no insurance, or those individuals who, by virtue of their age or social situation, are unable to receive proper coverage. In addition, chronically ill adolescents often use the subspecialty service as their source of primary care and specialty care. '2 As they tend to draw away from their specialty clinics, their primary care also becomes seriously compromised. Pediatricians have been among the professionals most concerned with this issue, and the various statements by the American Academy of Pediatrics over the years reflect increasing concern about the quality of health services for the older adolescent. It is of interest that in 1938, the age limits of pediatrics practice, as defined by the American Academy, were 16 to 18 years. 2 This age limit was redefined in 1972 to include individuals up to 21 years of age. 2 The latest statement of the Academy prolongs indefinitely the limit into adulthood for individuals with chronic diseases, stating that "there are special circumstances (e.g., a chronic illness or disability) in which, if mutually agreeable to the pediatrician, the patient, and, when appropriate, the patient's family, the services of the pediatrician may continue to be the optimal source of health care past the age of 21 years." This statement acknowledges a void in services for adolescents and young adults with chronic illness, and it accepts that a pediatrician is the one called upon to fulfill the caregiving role for this population. The issues that arise, however, are whether this model is the one that the health care system as a whole should be looking toward as a goal and, if so, whether it does fulfill the needs of this already adult population. Another issue centers on the appropriate setting and framework in which the care should take place. As care givers, we could create a situation in which the message is "grow-up, become independent," and at the same time patients are kept in an environment that is not necessarily conducive to the achievement of these goals.
TRANSITION: BASIC TENETS It is our opinion that the health care system should develop the means to care for these older individuals in an environment different from the pediatric setting. We also believe that there should be a transfer of care, at some point, from pediatric to adult health care services (i.e., internal medicine). In our work to achieve a successful transfer for our patients with cystic fibrosis, we based our actions on the following basic beliefs: 1. Many of the chronic congenital or genetic diseases are no longer exclusively "childhood diseases."
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2. Independence and self-sufficiency are desirable goals for adolescents with "pediatric diseases"· 3. The pediatric environment is not necessarily conducive to the achievement of independence for young adult patients. 4. The best care is that done in a multidisciplinary team approach. 5. Patients have the ability to adapt to new health care systems. 6. Given proper conditions, adult care givers are able to provide the quality care these individuals need. 7. Transition should be smooth; change should occur as part of a process and should not be imposed. 8. There needs to be a commitment on the part of both the leaders and members of adult and pediatric teams to the concept of transition and to excellence in care. 9. Ongoing collaboration and learning are essential parts of the process for all those involved in care of the maturing young adult. 10. There is no substitute for knowledge of the patient and commitment to care. These conditions are necessary to earn the patient's confidence.
OBSTACLES TO TRANSITION The obstacles to transition reside in the families, the pediatric care giver, the adult care giver, the health care team, and in the patient himself. We have attempted to summarize them in Table 2. The Patient Chronic illness fosters dependent behavior. Lack of support systems, lack of trust in care givers, severe illness, or poor self-image may hinder the willingness of a given patient to be exposed to a new set of circumstances and to have to establish a new set of relationships. Psychopathology, extreme immaturity, or severe disability interfere seriously with the readiness of individuals to transfer care, as does general lack of adherence to treatment regimens. The Family Transition must be a family affair. The family must be included in the process for it to be successful, because the family constitutes the strongest support system Table 2. Obstacles to Transition from Pediatric to Adult Health Care Systems The Patient Dependent behavior Immaturity Severe illness or disability Psychopathology Lack of support systems Lack of trust in care givers Poor adherence to treatment regimens The Family Excessive need for control Emotional dependency Psychopathology Parenting styles leading to overprotection Heightened perception of disease severity Lack of trust in caregivers Mistaken perception of potential survival
The Pediatric Caregiver Economic concerns and concerns about program Emotional bonds with patient and family Comfort with the status quo Perception of own skills as caregiver of adults Perception of potential survival of patients Distrust of adult care giver Ambivalence towards transition and transfer of care The Adult Caregivers Economic concerns Lack of understanding of congenital disease Lack of familiaritv with disease entities Heightened perc~ption of care demands Lack of institutional commitment
1116
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for most individuals. Certainly, parenting styles, ability to "let go," emotional dependency, and excessive need for control will mediate against this smooth process. These perceptions about severity of disease, or potential for survival, may lead to overprotective behavior and unwillingness to foster independence and change. Some family members can actually sabotage the process in spite of patient cooperation. The Pediatric Care giver One of the most difficult obstacles for transition is a negative attitude on the part of the pediatric caregiver. In general, the opposition or reluctance of pediatricians to agree to transition is based on a variety of assumptions, emotions, and economic issues. Many pediatric care givers have seen these patients grow from early life and have a strong emotional attachment; therefore, they view the patient's departure to a new source of services with some apprehension. Their feelings are not unlike those of parents who are strongly attached to their children and feel the need to protect them. Many feel that adults can be appropriately cared for in a pediatric environment and do not see any limitations in their own abilities to care for adults with specific disease entities, because they view themselves as experts in that disease, regardless of a patient's age. The paucity of adult-based services only reinforces the notion that the best care giver for these patients is the pediatrician. There is no clear incentive for many pediatric caregivers to seek out counterparts in the adult health care setting and to work with them in developing a specialized system of care for their own patients. There is a distinct risk of negative economic consequences, particularly for hospital-based programs, and an added risk of losing some patient-based support for research and other care activities that establish economic leverage with hospital administrations. Some may still, subconsciously, view their patients as having a short life span and perceive transition and transfer of care as unnecessary. Among the most powerful forces against transition are the negative economic consequences of losing a patient base and the very strong emotional ties between pediatric caregivers and their patients. The Adult Caregiver Many adult caregivers, on the other hand, are unfamiliar with "pediatric diseases" and feel uncomfortable spending time acquiring experience in the care of these patients. Many care givers have heightened perceptions of the demands of care and perceive this patient population as having a negative economic impact on their practices. Team care is not necessarily a widespread model in adult chronic disease management, and it is costly and difficult to achieve in many adult health care settings.
TRANSITION: THE EXPERIENCE In spite of all the difficulties, many models have been developed successfully. Successful transition is more likely to occur for patients who have conditions that internists are familiar with managing, such as diabetes mellitus, renal disease, oncologic diseases, sickle cell anemia, or asthma. Transition has been particularly difficult for patients with, for example, cystic fibrosis, congenital heart disease, and spina bifida. 3. 4 Cameron6 has identified three categories of children with kidney disease who may need eventual transfer to an adult unit: those requiring direct transfer owing to the severity of their condition (advanced renal failure, dialysis, and so forth), those requiring less urgent care (relapsing nephrosis, metabolic defects, and so on),
LIFE BEYOND PEDIATRICS
1117
and those who may develop problems later in life after an apparently resolved problem (i.e., acute glomerulonephritis, treated obstructive uropathy, and so forth). The author points out that in addition to the practical problems in transferring adolescents, there is also the potential for loss to follow-up and the need to minimize trauma to patients and families. He also states that the actual mechanics of transfer depend greatly on the local circumstances and the people involved. Obviously, whether the pediatric unit is in a facility contiguous to the adult unit or in a remote location will determine the ability to share or streamline resources and communicate with ease. Salmi et al l3 reported successful control of adolescents with diabetes mellitus in an adult unit. An interesting aspect of their experience was that male patients and those with a disease with a more recent onset (shorter course) seemed to adapt and achieve better control than female patients and those with a long disease history. Our experience in transferring patients with cystic fibrosis from a children's hospital to an adult facility has been similar in that it became clear that the patients who were sicker and needed more in-depth support and nurturing tended to have more problems with adaptation than those with milder disease. In general, physical or emotional instability mediates against successful transfer of care. Delengowski and Dugan-Jordan R have reported that adolescents with oncologic diseases can receive satisfactory care in adult units. They stressed, however, the need to educate the staff in adult units about developmental issues of adolescents and the need to involve parents in the care process. A problem identified by these authors was the impact of the young age of these seriously ill patients on the nursing staff. Feelings of overidentification with patients, sympathy, frustration, and anger emerged as causes of decreased therapeutic effectiveness and conflict.
TRANSITION: THE PROCESS The process of transition usually originates with the pediatrician's perception that his or her adult patients are "ripe" for care in an adult setting. As Cameron 6 points out, the first essential step is to perceive that there is a problem or a need. Once the decision to pursue a transition program has been made, the next step is to identifY a skilled adult specialist with an interest in pursuing the task. Many an effort has aborted at this stage because of frustration, lack of interest, or dearth of individuals in the adult setting willing to take on the task. At the same time, the pediatric team must examine its attitudes toward transition and develop a growing commitment to the process, while seeking support from the corresponding administrative and academic authorities. None of these endeavors is easy. The decision to give up the care of a segment of patients is not easy for all the reasons that have been discussed previously. There is a need to overcome the usual ambivalence that this decision will generate. The pediatric team must convince itself of the benefits to the patient (and to the team itself) of the transfer of care. It is important that the process of self-examination start even before active negotiations with an adult counterpart take place, in order to minimize negative feelings and potential sabotage of the program. In the identification process, it is easiest to look at individuals within the same institution (i. e., medical schools, hospitals). It is best to seek individuals who might view the opportunity to care for this segment of patients as a positive step in their career, from a clinical or research perspective. The potential for recognition and academic growth will be important incentives to spark interest in this kind of project. Exploration of the economics involved and reassurance that the program will result in financial improvement or, at the very least, in no financial
1118
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loss, are certainly important. Furthermore, it is important that institutional support be assured, in order to avoid the eventuality that the budding program hinge on the presenee of one isolated person. Section chiefs, administrators, and department chairmen will need some reassurance about the economic health of such a program and, ideally, should be involved in the process from the start as a means of securing their ongoing support. The ensuing steps involve the development of a training program for the adult caregivers that could include meetings, rotations of trainees through the pediatric subspecialty program, and, at all times, an ongoing dialogue between the pediatric and adult caregivers. Educational programs for patients, aimed at discussion of their needs as well as assessment of their readiness, need to take place. In our program, we started "transition clinics" in which patients were seen initially by both the pediatric and adult care givers and then by the adult care giver in a pediatric site; eventually, the patient moved physically from the pediatric to the adult institution. In institutions in which pediatric and adult programs are under the same roof, physical separation may not be needed, but days that are specifically targeted for adolescents and adults are necessary. Although there are several drawbacks to the physical separation of the pediatric and adult institutions (i. e., difficulty in sharing resources, more difficult communication), the fact that the patient leaves the institution becomes somewhat of a "rite of passage." This rite of passage may serve as an incentive for the patient to try to "stick it out" and to make more of an effort to develop a working relationship with the adult team. In institutions in whieh there is no physical separation (other than in-patient wards and different floors), patients may be more prone to play one team against another, go back and forth between teams, etc. As we indicated before, each program will need to respond to the geographic and administrative characteristics of the institution where it occurs. In our program at this point, 75 patients with cystic fibrosis are followed exclusively by the adult health care team. A structure has been established to assure ongoing communication (Fig. 1). Socialization among the members of the adult and pediatric teams and, ideally, "plenary meetings" of both teams should be encouraged, even though they generally are not easy to accomplish. An important aspect of the process is the transfer of important information from the pediatric to the adult caregivers. The creation of pertinent medical summary transfer forms, verbal communication, and handling of medical records are essential. Patients will feel very insecure if they perceive that their new "caregivers" may not be up-todate on all aspects of their care. Once the adult physician is identified, the most diffieult task is the building of an appropriate care giving team. An essential member, and first in the recruitment list, is the nurse-coordinator. This individual serves as interteam liaison, facilitates communication among team members, and is responsible for patient-management plans. Traditionally, nursecoordinators have been the backbone of chronic care programs. The team care model, however, may not fit within the framework of the existing structures; it is also financially onerous. Ylost individuals in administrative positions will not be favorably inclined to underwrite even portions of a team without assurances that their investment will be recovered. Thus, the leadership skills of the adult care giver are put to the test from the very beginning. After recruiting takes place, the development of a cohesive team and the education of this team need to occur with the help of the pediatric team, which, in turn, must act as unselfishly as possible. Again, ongoing communication among the leadership as well as among the team members across discipline lines (i. e., nurse with nurse, dietician with dietician, and so forth) is essential. For those individuals interested in developing a transition program, a useful source is the recently edited manual for transition of chronically ill youth. 5
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LIFE BEYOND PEDIATRICS
Medical Director (Pediatric)
Medical Director (Adult)
I
I
Transition Management Committee (Both M.D. Directors and Nurse Coordinators)
,
,
SW Nut PT Nurse
Nurse SW Nut PT
Figure 1. Team structure of transaction program. PT: Physical (respiratory) therapists; Nut: Nutritionist; SW: Social worker.
TRANSITION: ISSUES FOR THE FUTURE The road to transition is being built every day, albeit with difficulty. The care of the chronically ill individual requires a multiplicity of resources and economic support. Multidisciplinary care, education, insurance coverage, and empowerment of the chronically handicapped are all serious issues that have not been resolved. The future needs to bring an increasing involvement of state and federal agencies, as well as insurance carriers, in order to improve the medical insurance coverage for the disabled young adult. 11 Community-based care and home care need to be expanded. Transition is difficult but not impossible. When successfully achieved, it becomes a source of professional pride and patient satisfaction.
REFERENCES 1. Age limits of pediatrics. Pediatrics 81:736, 1988 2. Age limits of pediatrics. Pediatrics 49,463, 1972 3. Alien HD: The adolescent and young adult with heart disease. Am J Dis Child 139:976, 1985 4. Barbero CJ: Leaving the pediatrician for the internist. Ann Intern Med 96:673, 1982 5. Bronheim S, Fiel S, Schidlow DV, et al: Crossings: A Manual for Transition of Chronically
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III Youth to Adult Health Care. Washington, DC, Georgetown University Child Development Center, 1988 Cameron JS: The continued care of pediatric patients with renal disease into adult life. Am J Kidney Dis 6:91-95, 1985 Carroll G, Massarelli E, Otzoomer A, et al: Adolescents with chronic disease: Are they receiving comprehensive health care? J Adolesc Health Care 4:261-265, 1983 Delengowski A, Dugan-Jordan M: Care of the adolescent cancer patient on an adult medical oncology unit. Semin Oncol Nurs 2:95-103, 1986 Gortmaker SL, Sappenfield W: Chronic childhood disorders: prevalence and impact. Pediatr Clin North Am 31:3-18, 1984 Magrab PR, Millar HEC (eds): Growing up and getting medical care: Youth with special health care needs. Surgeon General's Conference-Conference Proceedings. Washington, DC, Georgetown University Child Development Center, March 1989 Newacheck PW: Adolescents with special health needs: Prevalence, severity and access to health services. Pediatrics 84(5):872-881, 1989 Palfrey JS, Levy JC, Gilber KL: Use of primary care facilities by patients attending specialty clinics. Pediatrics 63:567-572, 1980 Salmi J, Huupponen T, Oksa H, et al: Metabolic control in adolescent insulin-dependent diabetics referred from pediatric to adult clinic. Ann Clin Res 18:84-87, 1986
Address reprint requests to Daniel V. Schidlow, MD Section of Pulmonary Medicine St. Christopher's Hospital for Children 5th and Lehigh Avenues Philadelphia, PA 19133
