Contents
22.1 Risk-Based Healthcare for Survivors . . . 333 22.1.1 Risk-Based Healthcare:
Definition and Rationale . . . 333 22.2 First Transition Period: From Acute Cancer Care
to Long-Term Follow-up . . . 336 22.2.1 Models of Care for Follow-up
During Childhood . . . 336 22.2.2 Current Status of Risk-Based Healthcare
During Childhood . . . 337 22.2.3 Barriers to Transitioning Survivors
to Childhood Follow-up . . . 337 22.2.4 Methods to Facilitate Transition
and Risk-Based Healthcare of Survivors in Their Childhood Years . . . 337 22.3 Second Transition Period: Young Adulthood . . . 338 22.3.1 Models of Care for Young Adult Survivors 338 22.3.2 Current Status of Risk-Based Healthcare
for Young Adult Survivors . . . 339 22.3.3 Barriers to Transitioning Survivors
to Young Adult Follow-up . . . 340 22.3.4 Methods to Facilitate Transition
and Risk-Based Healthcare for Survivors in their Young Adult Years . . . 341 References . . . 343
22.1 Risk-Based Healthcare for Survivors
The preceding chapters have described the long-term outcomes and the potential late effects associated with chemotherapy, radiation therapy and surgery for cancer. The goal of caring for survivors is to max- imize their health and quality of life while minimiz- ing morbidity and mortality associated with these previous exposures. To accomplish this goal and pro- vide optimum healthcare for survivors, it is essential to develop a systematic plan for healthcare that ex- tends not just through childhood, but also through the lifetime of the survivor. There are significant bar- riers that must be faced and overcome to achieve this goal. Most notable are the barriers associated with two critical transition periods in the life of a sur- vivor: (a) transitioning from acute cancer care to long-term follow-up and (b) transitioning from the pediatric/adolescent years to young adulthood. Prior to addressing these two transition periods, it is im- portant to understand the meaning and rationale of risk-based healthcare.
22.1.1 Risk-Based Healthcare:
Definition and Rationale
To understand the concept of risk-based healthcare, it is important to recognize three principles that in- fluence the long-term health and well being of sur- vivors. First, the incidence of most late effects in- creases with age, generally becoming clinically ap- parent decades after therapy [3, 9, 20]. Second, through cellular changes and alterations in mecha- nisms of cellular and tissue repair, chemotherapy and radiation therapy administered to a developing child
Transition Issues
Kevin C. Oeffinger · Debra A. Eshelman
or adolescent will eventually result in a loss of reserve and a premature aging of various organ systems.
And, finally, as a survivor ages and develops diseases common to the middle adult years, such as hyperten- sion, diabetes and dyslipidemia, these new processes will compound the previous cellular/tissue damage and hasten the further loss of reserve or premature organ failure.
Fortunately, there is a window of opportunity to modify the severity of health outcomes by prevention or early intervention. Early diagnosis and interven- tion or preventive care targeted at reducing risk for late effects can benefit the health and quality of life of survivors [12]. The outcomes of the following late effects can be influenced by early diagnosis and early intervention: second malignant neoplasms following
radiation therapy (breast, thyroid and skin), altered bone metabolism and osteoporosis, obesity-related health problems (dyslipidemia, hypertension, dia- betes mellitus, cardiovascular disease), liver failure secondary to chronic hepatitis C following blood transfusion and endocrine dysfunction following chest/mantle or cranial radiotherapy. Primary, sec- ondary and tertiary prevention, including tobacco avoidance/cessation, physical activity, low-fat diet and adequate calcium intake, can modify risk. Longi- tudinal care addressing other late effects, such as infertility, musculoskeletal problems, cognitive dys- function and psychosocial issues, may also improve survivors’ health outcomes and quality of life.
Founded on these concepts, the recently published Institute of Medicine report, Childhood Cancer Sur-
Table 22.1. Models of care for pediatric and young adult survivors of childhood cancer
Follow-up during pediatric years Follow-up during young adult years
1. Long-term follow-up (LTFU) program Provide risk-based healthcare Surveillance for late effects of therapy Evaluation and management of psychosocial problems related to the cancer experience
Targeted education on methods to reduce long-term risk Approximately 50 % of treating institutions
have an LTFU program 2. Primary care physician
Pediatrician or family medicine physician Most primary care physicians are unfamiliar
with the risks and healthcare needs of childhood cancer survivors
Generally, do not have an established method of communication between the cancer center and the primary care physician
Medical summary provided to survivor for record and for primary care physician
1. Children’s hospital-based LTFU Extension of care for survivors
into their young adult years
Limited access to specialists in adult medicine May have limitations in services offered 2. One-time transition visit
Single visit in young adult years Based at children’s hospital Risks discussed
3. Young adult program
Based in an adult patient setting Involvement of primary care physicians
or medical oncologists
Access to specialists in adult medicine
Require significant resources and committed personnel 4. Community physician
Medical oncologist or primary care physician (general internist or family medicine physician) Most community physicians are unfamiliar with the risks
and healthcare needs of childhood cancer survivors Specialists in adult medicine are also unfamiliar
with risks of this population, influencing the process and outcomes of referrals
Generally, there is no established method of communication between the cancer center and the primary care physician
vivorship: Improving Care and Quality of Life, strongly encourages life-long follow-up of all cancer survivors [4]. Risk-based healthcare, defined as care of the survivor that includes a systematic plan for screening, surveillance and prevention, incorporat- ing a survivor’s risks based on the previous cancer/
cancer therapy, genetic predispositions, lifestyle be-
haviors and comorbid health conditions, is recom- mended for all survivors of pediatric cancer.
The concepts and practice of risk-based health- care have gradually evolved over the past two decades. In the following two sections, the two criti- cal transition periods of risk-based healthcare are discussed. Each section includes a description,
Table 22.2. Barriers to risk-based healthcare of childhood cancer survivors by transition period, and methods to facilitate tran- sition
First transition period: from acute cancer care Second transition period: from LTFU program to long-term follow-up (LTFU) program to young adult care
Barriers Barriers
Lack of adequate number of LTFU programs Survivor-specific barriers
Fear of continued care Lack of understanding or knowledge of risks Financial or distance constraints Fears of transitioning
Lack of understanding of the need Healthcare professional-specific barriers for continued surveillance Few programs for young adult survivors
Community healthcare physicians unfamiliar with the risks and problems of the population Lack of communication between cancer center
and community physicians Medical system-specific barriers
Difficulty finding affordable insurance, especially for survivors in rural settings or self-employed survivors
Limitations on medical insurance coverage of some screening tests in young adults Restrictions of managed care organizations Methods to facilitate transition Methods to facilitate transition
Clearly explain purpose of risk-based care Survivor in an LTFU program
Discuss long-term plans for follow-up Develop a policy for the process of transition through the survivor continuum Identify qualified and committed healthcare providers Address emotional issues of survivorship Involve the survivor and the family in the process Provide a summary of the cancer diagnosis Assess the expectations and healthcare beliefs
and treatment of the survivor and the family
Educate regarding risks and methods Emphasize the goals of risk-based healthcare
to reduce risk Highlight the importance of the survivor/family
Foster self-care practices as the key providers of healthcare information Promote positive decision-making skills Focus on the survivor as self-advocate
for healthy lifestyles Stress the ongoing communication between the LTFU team and new providers
Discuss the transfer of medical records and the oncology medical summary
Survivors in general (and not in an LTFU Program) LTFU community as activists for survivorship Raise public awareness
Educate insurance companies and managed care organizations Communicate with state and federal legislators
specific to the age and needs of the survivor, of (a) models of care, (b) current status of care, (c) barriers to transitioning and (d) methods to facilitate tran- sition. A synopsis of this information is provided in Tables 22.1 and 22.2.
22.2 First Transition Period:
From Acute Cancer Care to Long-Term Follow-up
The concept of transitioning moves the survivor and her family across the continuum of pediatric oncolo- gy care from the acute phase of cancer diagnosis and treatment, through a maintenance phase and then, finally, to survivor status. Ideally, when a survivor is off therapy and through the time period of highest rate of relapse (generally 24 months off therapy), she is transitioned from the primary treating oncologist to a longitudinal program focused on her long-term healthcare needs, in addition to the acute care needs.
Longitudinal programs, based at cancer centers or children’s hospitals and generally referred to as
“long-term follow-up” (LTFU) programs.
Throughout the course of her illness, the survivor and her family have likely developed significant rela- tionships, expectations and a high level of trust and comfort with the people involved in their care. The depth of this type of relationship contributes to the feeling of the children’s hospital and the employees as a second home or “adopted” family. Transitioning to the LTFU or survivor program – albeit a milestone for the cancer survivor – may cause a wide range of emo- tions. Survivors and their families often deal with new fears when follow-up care intervals become extended, testing becomes less frequent and new healthcare providers are introduced. Still, however, care in traditional LTFU settings is within the con- fines of the pediatric hospital, where a level of com- fort has already been established, expectations are known and processes are familiar.
22.2.1 Models of Care
for Follow-up During Childhood
The primary and recommended model of care for survivors in childhood is through an LTFU program.
In addition to monitoring for recurrence or relapse of the primary cancer in the early years of follow-up, the focus gradually shifts to providing risk-based care that includes surveillance for late effects of therapy, evaluation and management of psychosocial problems related to the cancer experience and target- ed education on methods to reduce long-term risk.
In North America, care provided through LTFU pro- grams is relatively homogenous. Most programs evaluate survivors on an annual basis. During this visit, the history and physical examination should be targeted for the particular risks associated with the treatment exposures of the survivor. Based upon the findings of the history and physical examination, the previous-treatment exposures and modifying factors of risk (genetic predisposition, lifestyle be- haviors), screening tests are generally obtained to assess for asymptomatic and symptomatic late ef- fects.
The second model of care is follow-up by a pri- mary care physician in the community. Although there may be program or individual-specific success stories of collaboration between cancer centers and community physicians, there is generally a lack of communication or a systematic method of enhancing follow up of the survivor. Because of the time de- mands of risk-based healthcare and the necessary multidisciplinary approach, optimum care is general- ly not delivered through this second model [8, 11, 22].
In recent years, some programs have begun to
experiment with a hybrid of the two models. Using a
shared management approach, LTFU programs seek
to formalize their collaboration with primary care
physicians in the community. The impetus for this
approach is the recognition that many LTFU pro-
grams do not have adequate resources to follow their
burgeoning population of survivors. With a focus on
continuity of care, the survivor is formally transi-
tioned to a primary care physician. Continued two-
way communication is an essential component of this approach, not just at the time of transition but through the life of the survivor.
22.2.2 Current Status
of Risk-Based Healthcare During Childhood Although there is general agreement that risk-based healthcare provided through LTFU programs is im- portant to the health and well-being of survivors, there is a paucity of such programs in North Ameri- ca. In 1997, only 53% of the centers that treat children and adolescents for cancer had an LTFU program [13]. Since that time, this number has slowly in- creased. However, because of the limited resources and available trained personnel, a significant percent of centers still lack a LTFU program. Compounding this, many programs exist within the acute care envi- ronment, without dedicated space, time or staffing for long-term care. The problem is illustrated by the fact that 10 years after cancer diagnosis, not even one-third of the 12,871 survivor participants in the Childhood Cancer Survivor Study reported a visit to a cancer center or children’s hospital during the pre- vious two years.
22.2.3 Barriers to Transitioning Survivors to Childhood Follow-up
In addition to the lack of LTFU programs, there are other barriers to the risk-based care of survivors dur- ing childhood that should be considered. Even when an LTFU program exists at the treating institution, survivors and their families may elect not to return because of financial or distance constraints, fear of the hospital (and reminders of the cancer experi- ence) or a lack of understanding of the need for con- tinued surveillance. Fortunately, lack of health insur- ance is generally not a problem during the childhood years, as most state-supported programs continue to provide healthcare insurance for survivors through- out their childhood.
Although this has not been formally studied, many directors and coordinators of LTFU programs with dedicated staff and time anecdotally report high follow-up rates of their survivor population. This
leads one to conclude that the primary barrier to the risk-based healthcare of survivors in this age group may, indeed, simply be the scarcity of such programs.
22.2.4 Methods to Facilitate Transition and Risk-Based Healthcare of Survivors in Their Childhood Years
To date, there has been little published specifically about the preparation of the cancer survivor for tran- sition. The principles of transition published for oth- er chronically ill children may be applied [16, 18].
Transition is a process, not an event, and, as such, it should be available to the survivor/family at various intervals during their long-term follow-up.
During the initial introductory visit to the LTFU clinic, the purpose of risk-based healthcare should be clearly explained, with the overall global plans for follow-up during the pediatric years as fully as possible delineated. Providers should introduce the oncology medical summary or treatment history and emphasize the importance of knowing what is included in this document and how to provide the information it contains to subsequent healthcare providers. Although, at this point, the parents are the primary keepers of information, every opportu- nity to include the child in the educational process in an age-appropriate manner should be capitalized upon. The pediatric healthcare provider must contin- ually foster self-care practices and promote positive decision-making skills for healthy lifestyles. This can be accomplished by simple strategies, such as allowing adolescent survivors to provide medical history, fill out demographic forms and be examined privately.
This is also a transition period for the parent(s).
Having gone through the traumatic experience of the
cancer diagnosis and therapy, the parent is often very
involved in the care of the survivor and may be over-
protective. It is important, over time, to assist the par-
ent in facilitating the survivor’s growth in self-care
skills. The parent(s) need to be supported in their
willingness to have the adolescent survivor seen pri-
vately. Providing the parent(s) with an opportunity
to express their fears, concerns and frustrations
through this period promotes a healthy relationship between the survivor, the parent and the healthcare professionals.
22.3 Second Transition Period:
Young Adulthood
As the survivor enters late adolescence and young adulthood, she and her family embark upon the sec- ond critical transition period [7]. This is a develop- mentally important time in the life of the survivor, as she begins exerting her independence and becomes responsible for her own healthcare. How the cancer experience influences the health practices and behav- iors of the parent of an adolescent with cancer (e.g.
preventive periodic health examination, completion of cancer screening tests, tobacco use and physical activity) is not well understood. Likewise, how the health-seeking practices of the parent(s) and the sur- vivor/family cancer experience affect the develop- ment of a survivor’s health beliefs and practices, and how these are modified as the survivor progresses through adolescence into young adulthood, have not been explored in a systematic, theory-based manner.
This developmentally vulnerable period overlaps with the optimum window of opportunity for pre- vention and early detection/intervention for many late effects. Thus, risk-based care is vital during this period of the survivor’s life [5, 12].
22.3.1 Models of Care for Young Adult Survivors
There are four models of care for young adult sur- vivors: (1) continued follow-up at the childhood can- cer center; (2) one-time evaluation of adult survivors at a childhood cancer center, with a planned transi- tion to a primary care physician; (3) young adult pro- grams at academic centers; and (4) care provided by a medical oncologist or a primary care physician in the community [11]. Each of these models is briefly described below.
A few LTFU programs follow survivors into their young adulthood, generally to around age 25–30, but sometimes older. These programs are focused on ed-
ucating survivors about long-term risks and deliver- ing preventive healthcare. Without the involvement of medical professionals trained in providing care for young adults, the pediatric providers in these pro- grams have generally acquired additional skills over time. Anecdotally, the directors of these programs generally have had difficulty finding medical profes- sionals with adult healthcare experience. Many express the sentiment that if they did not continue seeing the survivor, risk-based care would not be delivered.
As a second model of care, the Children’s Hospital of Philadelphia (CHOP) developed a novel and successful transition program several years ago.
Adult survivors, generally over the age of 25 years, are seen for a one-time evaluation by a pediatric oncology nurse practitioner and physician from the survivorship team. At this visit, potential risks based on previous treatments are discussed and a medical summary with recommendations is provid- ed to the survivor and sent to their primary care physician.
The “young adult survivor program,” as it is re- ferred to, is a relatively new model of care. Two varia- tions of this model have evolved. In one, primary care physicians in an academic setting are involved in or direct the program, and survivors are seen in a prac- tice setting that includes adults. As an example, the author of this chapter directs a multi-disciplinary program for young adult survivors, which is called the After the Cancer Experience (ACE) Young Adult Program [14]. This program, developed in 1994, is a collaborative effort between the Center for Cancer and Blood Disorders at the Children’s Medical Center of Dallas and the Departments of Family Practice &
Community Medicine and Pediatrics at the Universi-
ty of Texas, Southwestern Medical Center at Dallas. In
mid to late-adolescence, survivors are transitioned
from the ACE Program at the Children’s Medical Cen-
ter of Dallas to the Family Practice clinic. The co-au-
thor of this chapter, a pediatric oncology nurse prac-
titioner, coordinates both the ACE and ACE Young
Adult Programs and is the primary patient educator,
providing the key bridge of continuity between the
two institutions. In addition, a multi-disciplinary
network of pediatric and adult specialists, including
cardiologists, hepatologists, reproductive endocri- nologists and psychologists, has been developed to serve for the special needs of survivors.
Through collaborative efforts between pediatric and adult oncologists in cancer centers or academic settings, another type of young adult program has also evolved over the past few years. Childhood can- cer survivors are transitioned to the adult oncologist at or around the age of 18 for long-term follow-up.
The pediatric oncologist generally continues involve- ment for an extended period of time. A few programs of this type also provide healthcare for survivors of young adult cancers, such as testicular cancer. Both types of program for young adults require significant resources and committed personnel, which tends to impede their adoption in most settings.
Medical oncologists in the community provide healthcare for a small percentage of young adult sur- vivors. However, most adult oncologists are not par- ticularly cognizant of the special long-term risks of childhood cancer survivors and care often resembles prolonged acute care, with a focus on late recurrence or relapse of the primary cancer, rather than on the potential for late-effects of therapy.
Finally, many, if not most, young adult survivors seek a primary care physician for some aspect of their healthcare and, as with medical oncologists, most primary care physicians are unfamiliar with the risks of this population, a state of affairs which should not be surprising [12]. There is no primary, widely used, care-specific textbook that describes the risk-based care of survivors. Nationally recommend- ed curricula for instruction of medical students and primary care residents do not include the topic of healthcare for childhood cancer survivors. Little has been written in primary, care-based journals or gen- eral, non-cancer specific journals regarding child- hood cancer survivors and their long-term health- care. Compounding this general lack of readily avail- able information, there has not been a national effort to link childhood cancer centers with primary care physicians in the transitioning process. Although, on occasion, an LTFU program identifies a primary care physician in the community who is interested in providing care for survivors and a collaborative rela- tionship develops, this is the exception. Moreover,
because of constant changes in insurance plans, long-term continuity with the same primary care physician is infrequent, necessitating that most LTFU programs continually re-establish ties with the sur- vivor’s physician.
As a result of these difficulties, there can be a pro- tracted interval in initiating the transition to long- term care – and the longer the interval, the less likely it is to occur at all.
For the primary care physician, who sees a sur- vivor and attempts to navigate the complexities of a cancer center to find and communicate with the indi- vidual(s) involved in long-term survivor care, frus- tration is often the outcome. Compounding the prob- lem is that the fact that a typical family physician generally has only two to three young adult survivors in her practice [10]. Recognizing that these survivors are heterogeneous, with a variety of different cancers diagnosed at different age periods in different treat- ment eras, and that the recommendations for screen- ing and surveillance are constantly evolving, it is un- derstandable that primary care-initiated, risk-based healthcare for survivors is infrequent.
22.3.2 Current Status of Risk-Based Healthcare for Young Adult Survivors
In a recent analysis of 9,434 young adult survivors of childhood cancer (age range 18–48 years; mean:
27 years), 19% of the cohort reported a medical visit to a cancer center within the previous two years [15].
Only 42% reported a healthcare visit in the previous
two years that addressed their previous cancer or
cancer therapy. The older the survivor or the greater
the time interval from cancer diagnosis, the less
likely s/he was to report a visit to a cancer center or a
medical visit that addressed prior cancer or cancer
therapy. This trend was also apparent for those treat-
ed with therapies associated with substantial risk for
cardiovascular disease or breast cancer.
22.3.3 Barriers to Transitioning Survivors to Young Adult Follow-up
For the past four years, the authors of this chapter have led a multi-institutional study identifying and describing barriers to transitioning young adult sur- vivors to risk-based healthcare. These barriers can be categorized in three groups: survivor-specific, health- care professional-specific and medical system-specif- ic. Each is briefly described in the following para- graphs.
The primary barrier specific to survivors is a lack of knowledge or understanding about the risks asso- ciated with previous cancer therapy. Highlighting the lack of awareness of their health risks, Kadan-Lottick and colleagues surveyed 635 long-term survivors of childhood cancer and reported that while most (91%) survivors had a fair knowledge of their gener- al diagnosis and whether they received chemothera- py (94%) or radiation therapy (89%), the depth of their knowledge was generally minimal [6]. Only 15% responded that they had ever received a sum- mary of their cancer diagnosis and treatment. To bet- ter understand this problem, it is important to study the relationship of the age-appropriate delivery of information to the survivor and her family and their healthcare practices. If, when a survivor becomes an independent on her own behalf, she is unaware of the details of her cancer and of the long-term risks, the likelihood of her seeking out lifelong risk-based care is minimal. The transition period is also a fright- ening time for many survivors and their parents, as they leave the safe and comfortable confines of the pediatric setting for the unpredictability of the adult setting. These fears, which are natural, mirror the emotional and developmental struggles that accom- pany the development of the adolescent into an inde- pendently thinking adult. If the fears are not ad- dressed, however, they can impede the transition process.
Besides the barriers specific to healthcare profes- sionals discussed above, long-term healthcare for survivors is plagued by the scarcity of programs for providing such care. There are fewer than twenty LTFU programs in the United States that provide care for young adult survivors past the age of 25. For vari-
ous reasons, including limited resources, it is not anticipated that the number of programs will appre- ciably increase in the near future. As a result, most young adult survivors will be followed by primary care physicians, most of whom are likely to be unfamiliar with the risks of their patients. Com- pounding the problem is the fact that most adult spe- cialists – including cardiologists, obstetricians and surgeons – are equally unfamiliar with the childhood cancer survivor population. This obviously can affect the quality of care delivered to the survivor present- ing with a new and symptomatic late effect. In addi- tion, there is frequently a lack of communication be- tween cancer centers and community physicians.As a result, healthcare provided by professionals who are not cognizant of the exposure-related risks of sur- vivors tends towards two extremes: ordering many unnecessary tests or minimizing the symptoms of the survivor and attributing them to anxiety or depres- sion.
Barriers specific to the medical system are equally daunting. Survivors who live in rural settings or are self-employed usually cannot find affordable insur- ance, making it difficult to access appropriate health- care. For survivors with medical insurance, coverage may not include recommended screening tests, such as a screening mammogram for a 27 year-old female Hodgkin’s survivor who had mantle radiation. It is not unusual for a survivor to live in an area with a young adult program, only to find that the program is not included in the health maintenance organiza- tion’s plan.
Many of the barriers identified by Schidlow and
Fiel [19] that adolescents with chronic diseases face
in making the transition into adult healthcare sys-
tems are also applicable to survivors. The patient may
exhibit dependent behavior and immaturity. The
family may demonstrate an excessive need for con-
trol, emotional dependency or a lack of trust in the
new healthcare providers. As Schidlow and Fiel em-
phasize, the pediatric and adult healthcare providers
also have obstacles to overcome for a healthy transi-
tion. The pediatric provider often has strong emo-
tional bonds with the patient and the family and may
feel distress in “letting go.” Some pediatric caregivers
may believe that they have the necessary skills for
providing care to the survivor as an adult, or they may distrust the adult caregiver. The adult caregiver may also have concerns, specifically about the lack of institutional commitment or perceived heightened care demands.
22.3.4 Methods to Facilitate Transition and Risk-Based Healthcare for Survivors in their Young Adult Years
If an adolescent survivor is followed in a LTFU pro- gram, there are several steps that are important to address in order to enhance the transition from the pediatric cancer center to adult services. The primary goal of a successful transition center is, on the one hand, to promote optimal health and well-being, while, on the other hand, facilitating a successful in- tegration into adult life. As Blum reported, the transi- tion goals should be able to provide comprehensive, coordinated, uninterrupted, developmentally appro- priate and psychosocially sound healthcare that ulti- mately leads to adult self-sufficiency [2]. The general principles of transition, as endorsed in position pa- pers of the American Academy of Pediatrics, the American Academy of Family Physicians and the Society for Adolescent Medicine, include: (1) devel- opment of a policy for the process (e.g. the concept of transition as the next logical step in the cancer expe- rience continuum); (2) identification of qualified and committed healthcare providers; and (3) survivor family involvement in the process [1, 2]. Additionally, we advocate an assessment of the survivor/family expectations and healthcare beliefs prior to the tran- sition process. Each of these steps in the transition process is described in the following paragraphs.
In late adolescence, during the latter part of the high school years, the LTFU team should discuss the concept of transitioning from the pediatric health- care environment to one suited for young adults.
Educational efforts of the LTFU team should clearly state that the healthcare needs of the survivor, as he or she enters the young adult years, will extend be- yond the expertise of the pediatric oncology center and staff. Communicating transition as the next nat- ural step along the cancer experience continuum and facilitating strategies to enable this process will con-
tribute to survivor independence and positive func- tional outcomes. The LTFU team, which primarily uses nurse practitioners and nurses as key educators, should: (1) emphasize the inclusion of the survivor’s current medical team in the transition process;
(2) discuss the transfer of medical records and the oncology medical summary; (3) stress the ongoing communication between the former team and new providers; (4) highlight the importance of the sur- vivor/family as a key providers of healthcare infor- mation; (5) focus on the survivor as self-advocate;
and (6) emphasize the goals of healthcare mainte- nance. Obviously, the movement into adult care is de- pendent upon unique institutional and individual circumstances and assumes that a plan is in place.
Transitional plans should always include an assess- ment of survivor readiness, ability to understand the importance of risk-based care, expectations of the process and an emphasis on individualized care that is focused on physical, psychological, emotional, cul- tural, spiritual and vocational needs. It is important to emphasize to young adults who feel strongly con- nected to their pediatric oncology team that transi- tioning to adult services as a means to maintain their health is a not a loss but a reason for celebration [16].
While acknowledging the very real feelings of loss, focusing on the future and the transition as an important step can facilitate the process.
The LTFU program should work with the survivor
and her family to identify an adult setting with equiv-
alency in quality and intensity of services and an
adult healthcare professional experienced and
knowledgeable about risk-based care [12, 17]. As not-
ed above, few young adult programs exist. When a
young adult program is not an option, the LTFU
should identify a cadre of primary care physicians in
the community who “welcome” survivors into their
practice and develop a relationship that facilitates
communication. Although this can be a difficult task,
the LTFU enhances its overall transition efforts by
systematically developing and educating a group of
primary care physicians in the community. It is not
enough to simply find a physician to “care” for the
survivor. To be effective in this process requires on-
going work by the LTFU team in the community, with
face-to-face meetings with primary care physicians
(either individually or as a group) to foster these re- lationships. This will provide the LTFU program and the survivor/family several options for choosing a primary care physician. A critical component of the process is effective two-way communication between the LTFU program and the primary care physician about the health risks and needs of the individual survivor. As new information is disseminated in the cancer literature, the LTFU program needs to update the primary care physician. Connecting the primary care physician to the Children’s Oncology Group (COG) Long-Term Follow-Up Guidelines for Sur- vivors of Childhood, Adolescent, and Young Adult Cancers (www.survivorshipguidelines.org) and as- sisting with questions is an important part of facili- tating risk-based care. Having an ongoing relation- ship with the primary care physician will also en- hance the likelihood of collecting information about the health outcomes of the survivor as part of the LTFU database. Needless to say, this process is diffi- cult and demands time and resources. However, with- out it, most survivors transitioning from the LTFU will have few, if any, options for risk-based care.
Transition cannot be accomplished without the
“buy in” of the survivor and her parents. There may be fear and ambivalence, especially on the part of the parent, about leaving the pediatric treating center.
With effective educational sessions through adoles- cence, the concept of transition and the need for on- going follow-up and health maintenance throughout the lifespan of the survivor should be emphasized.
With each decision, the survivor and family must be actively involved and their fears and concerns dis- cussed. Having a rotating board or panel of survivors and parents to provide feedback and evaluate the LTFU transition process can be a positive and benefi- cial experience for all groups.
The challenge of transition is not unique to child- hood cancer survivors. Adolescents with chronic dis- eases, such as cystic fibrosis, juvenile diabetes and sickle cell anemia, face similar obstacles. In recent years, the concept of medical homes, strongly en- dorsed and supported by the American Academy of Pediatrics, has been developed [16]. This effort seeks to create comprehensive, multidisciplinary health- care for children with chronic diseases. It is hoped
that, in the near future, these efforts will lead to inter- ventions that can be generalized to facilitate health- care during the transition into young adulthood.
There are, however, some unique differences between most childhood cancer survivors and children with chronic diseases. Notably, the chronic disease causing special needs generally persists into adulthood, whereas the cancer is cured. Further, the long-term healthcare problems of the adolescent or young adult with a chronic childhood illness is a result of the ill- ness. In contrast, the healthcare problems of cancer survivors are usually a consequence of their treat- ment. Perhaps most importantly, though, the majori- ty of survivors who experience health problems in adulthood will be relatively asymptomatic during their adolescent and early young adult years. Thus, the symptomatic “cues to care” experienced by the in- dividual with chronic disease will often not be shared by the asymptomatic survivor.
The preceding comments are intended for the sur- vivor who is involved in an LTFU program. In reality, however, well over half of survivors are not followed in an LTFU setting. What can the LTFU programs do for these survivors? First, to promote change, the community of LTFU providers must adopt the role of the activist. Risk-based care of childhood cancer sur- vivors, while strongly supported by the evidence, is the exception rather than the rule. As stated by Schwartz, it is essential that LTFU providers advocate for survivorship, increase awareness with respect to the issues and, finally, work to improve the currently inadequate delivery of care to this population [21].
This includes working with and educating insurance companies and managed care organizations and communicating with state and federal legislators.
Efforts to develop informational systems on the In-
ternet that are easy to access and navigate will also
help disseminate needed information to survivors
and healthcare professionals.
References
1. American Academy of Pediatrics, American Academy of Family Physicians, American College of Physicians-Amer- ican Society of Internal Medicine (2002) A consensus state- ment on the health care transitions for young adults with special health care needs. Pediatrics 110:1304–1306 2. Blum RW, Garell D, Hodgman CH, Jorissen TW, Okinow
NA, Orr DP, Slap GB (1993) Transition from child-centered to adult health-care systems for adolescents with chronic conditions. A position paper of the Society for Adolescent Medicine. J Adolesc Health 14:570–576
3. Green DM (2003) Late effects of treatment for cancer dur- ing childhood and adolescence. Curr Probl Cancer 27:127–
142
4. Hewitt M, Weiner SL, Simone JV (eds) (2003) Childhood Cancer Survivorship: Improving Care and Quality of Life.
National Academies Press, Washington DC
5. Hudson MM, Mertens AC, Yasui Y, Hobbie W, Chen H, Gurney JG, Yeazel M, Recklitis CJ, Marina N, Robison LL, Oeffinger KC (2003) Health Status of adult survivors who are long-term childhood cancer survivors: a report for the Childhood Cancer Survivor Study. JAMA 290:1583–1592 6. Kadan-Lottick NS, Robison LL, Gurney JG, Neglia JP, Yasui
Y, Hayashi R et al. (2002) Childhood cancer survivors’
knowledge about their past diagnosis and treatment – childhood cancer survivor study. JAMA 287:1832–1839 7. MacLean WE, Foley GV, Ruccione K, Sklar C (1996) Transi-
tions in the care of adolescent and young adult survivors of childhood cancer. Cancer 78:1340–1344
8. Mertens AC, Cotter KL, Foster BM, Zebrack BJ, Hudson MM, Eshelman D, Loftis L, Sozio M, Oeffinger KC (2004) Improving health care for adult survivors of childhood cancer: recommendations from a Delphi panel of health policy experts. Health Policy (in press)
9. Neglia JP, Nesbit ME Jr (1993) Care and treatment of long- term survivors of childhood cancer. Cancer 71 [Suppl 10]:
3386–3391
10. Oeffinger KC (2000) Childhood cancer survivors and pri- mary care physicians. J Fam Pract 49:689–690
11. Oeffinger KC (2001) Longitudinal cancer-related health care for adult survivors of childhood cancer. National Cancer Policy Board Commissioned Paper, Institute of Medicine
12. Oeffinger KC (2003) Longitudinal risk-based health care for adult survivors of childhood cancer. Curr Probl Cancer 27:143–67
13. Oeffinger KC, Eshelman DA, Tomlinson GE, Buchanan GR (1998) Programs for adult survivors of childhood cancer.
J Clin Oncol 16:2864–2867
14. Oeffinger KC, Eshelman DA, Tomlinson GE, Buchanan GR, Foster BM (2000) Grading of late effects in young adult survivors of childhood cancer followed in an ambulatory adult setting. Cancer 88:1687–1695
15. Oeffinger KC, Mertens AC, Hudson MM, Gurney JG, Casil- las J, Chen H,Yeazel M,Whitton J, Robison LL (2004) Health care of young adult survivors of childhood cancer: a report from the Childhood Cancer Survivor Study. Ann Fam Med (in press)
16. Reiss J, Gibson R (2002) Health care transition: destina- tions unknown. Pediatrics 110:1307–1314
17. Rosen DS (1993) Transition to adult health care for adoles- cents and young adults with cancer. Cancer 71:3411–3414 18. Scal P, Evans T, Blozis S, Okinow N, Blum R (1999) Trends in
transition from pediatric to adult health care services for young adults with chronic conditions. J Adolesc Health 24:259–264
19. Schidlow DV, Fiel SB (1990) Life beyond pediatrics: transi- tion of chronically ill adolescents from pediatric to adult health care systems. Med Clin North Am 74:1113–1120 20. Schwartz CL (1995) Late effects of treatment in long-term
survivors of cancer. Cancer Treat Rev 21:355–366
21. Schwartz CL (2003) Health status of childhood cancer sur- vivors: cure is more than eradication of cancer. JAMA 290:1641–1643
22. Zebrack BJ, Eshelman D, Hudson MM, Mertens AC, Cotter KL, Foster BM, Loftis L, Sozio M, Oeffinger KC (2004) Health care for childhood cancer survivors: barriers to op- timal care and suggestions for long-term follow-up. Cancer (in press)
