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American Cancer Society
Workshop on Quality of
Life in Children’s Cancer:
Implications for Practice
and Research,
January 20-22, 7995
Transitions in the Care of
Adolescent and Young Adult
Survivors of Childhood Cancer
William E. MacLean, Jr., Ph.0.’
Genevieve V. Foley, R.N., M.s.N., o.c.N., c.N.A.A.~
Kathy Ruccione, R.N., M.P.Hn3
Charles Sklar, M.D!
’ Department of Psychology/Human Development, Peabody College of Vanderbilt University,
Nashville, Tennessee.
* Pediatric and Social Nursing, Memorial Sloan-Kettering
Cancer Center, New York, New
Division of Hematology-Oncology, Children’s Hospital Los Angeles, Los Angeles, California.
Division of Pediatric Endocrinology, Memorial Sloan-Kettering Cancer Center, New York,
New York.
Address for reprints: William E. MacLean, Jr.,
Ph.D., Department of Psychology, P.O. Box
3415, University of Wyoming, Lararnie, WY
Received April 23, 1996; accepted May 17,
0 1996 American Cancer Society
teady progress in developing effective treatments for childhood
cancer over the past 30 years has created an “epidemic of survival.”’ This “epidemic” has established a need to consider a variety
of important issues such as the nature and frequency of surveillance
for late effects, what constitutes appropriate follow-up, and where
follow-up should take place. Participants in previous American Cancer Society (ACS)- sponsored workshops on children and adolescents
with cancer have advocated that “long-term survivors be followed by
appropriate caregivers for life and the information regarding their
status be shared with the treating institution.”’ Recommendations
have also supported the creation of designated facilities to provide
posttreatment follow-up of long term cancer s u r ~ i v o r s .The
~ * ~purposes of these facilities are to monitor for late effects of cancer treatment, to provide health-related teaching to patients and their families
that focuses on health maintenance and prevention of future health
problems, and to educate clinicians about the health care needs of
cancer s u r ~ i v o r s . They
~ - ~ also provide a useful venue in which to
conduct research on late effects of cancer and its treatment. Perhaps
even more important in the context of this workshop is the potential
for such programs to enhance the overall quality of life of survivors
and their families.
Recommendations regarding long term follow-up of child and
adolescent cancer survivors require an examination of various transitions that act as milestones for the childIadolescent and family. Webster’s New Collegiate Dictionary defines “transition” as the “passage
from one state, stage, or place to another.” This definition captures
very well the transitions most crucial to long term survivors, that is,
the transition from being involved in active treatment to completing
a treatment protocol or the transition from off-treatment to long term
survival (state),changes in locus of health care provision made neces-
Transitions in CarelMacLean et al.
Treatment Team
Late Eflects
Active Treatment
Reiapse or Recurrence
Late Effects
Disease Progression
Terminal Care
FIGURE 1. Graphic description of care provision and treatment course
for long term cancer survivors. Adapted with permission from Holland J.
Psychologic aspects of cancer. In: Holland J, Frel E 111, editors. Cancer
medicine. Philadelphia: Lea & Febiger, 19821175-1203.
sary by entry into adulthood (stage), or the transition
from active treatment clinic to off-therapy clinic
(place). These transitions are depicted in Figure 1.
Given the increased survival in pediatric cancer, it has
been necessary to elaborate on a schematic first published by Holland.8
Common Elements of Transitions
Transitions are characterized by disorganization and
upheaval of previously established routines and expectations.9 People experience transitions as stressful because they present adaptational challenges, frequently
evoke anxiety, and require a period of readjustment.
The psychologic literature on stress and coping includes a variety of transitions including normative developmental challenges such as adolescence or middle
age and family transitions such as marriage, divorce,
birth of a child, or loss of a parent. Similarly, the nursing literature has long realized the significance of transitions for understanding changes in health status, in
health-seeking behavior, and in health care utilization.” These perspectives inform our thinking about
transitions in care and health care provision that confront pediatric cancer survivors and their families. Accordingly, we offer several suggestions that may facilitate coping with the various transitions depicted in
Figure 1.
First, transitions related to the cancer experience
should be acknowledged by caregivers, patients, and
families as are other important transitions in the child/
adolescent’s life. Second, transitions should have a
clear beginning point with minimal lag time since
completion of the previous phase. Third, there should
be an acknowledgment that transitions are concerned
with changes to facilitate a positive outcome. From
these changes realistic, developmentally appropriate
goals and plans need to be developed with the child/
adolescent and family. Fourth, transitions involve psychosocial issues as well as specific treatment issues.
Beginnings and endings have meaning for the child/
adolescent, family, and care team. These meanings
need to be acknowledged and dealt with for successful
outcomes to occur. Specific consideration of these
points are addressed in the three specific transitions
relevant to long term survivors.
Transition from On-treatment to Off-treatment
This transition occurs during a variable time period
between the completion of planned therapy, and the
uncertain, hoped-for status of long term survivor. The
significance of the transition for families is frequently
underestimated by providers. Patients and families are
often ambivalent about terminating use of chemotherapeutic agents known to be responsible for the cancer
remission.’’ Consequently, they often report anxiety,
fears, and feelings of vulnerability as active treatment
ends.1’,12The protocols and treatment modalities,
which have provided structure and reassurance, are
replaced by a watch and wait period in which recurrence is still a possibility. Typically, patients and parents say, “I never thought stopping treatment would
be even harder than starting it, but it is.”
There are various clinical models being used to
acknowledge the beginning of this transition. One of
the most useful is a formal conference.’ The on-treatment to off-treatment transition conference has several specific goals. First, a sense of closure to active
treatment should be achieved. The treating team
should acknowledge the anxiety and uncertainty accompanying this change while summarizing the factual events of the treatment time. A transition conference allows an opportunity for all participants to discuss any lingering issues or unfinished business. Table
1 provides a suggested educational curriculum for patient and family education in an exit interview. Second, the conference provides an opportunity to shift
from active treatment to a focus on instilling a health
lifestyle perspective that reflects an understanding of
the disease, completed treatment, and potential late
effects. Although there may have been previous discussion of possible late effects, it is important to reintroduce this topic because the family may have forgotten or the late effects may have been less relevant in
a chronologically younger child ( e g , fertility). Third,
the conference provides an opportunity to accurately
assess the potential of relapse. Families may feel particularly vulnerable at this juncture: having completed
active treatment but not quite used to being without
ongoing treatment. Fourth, there should be a focus on
families reestablishing themselves. In some instances,
it may be necessary to redefine the child’s baseline
CANCER September 15,1996 / Volume 78 I Number 6
Suggested Components of a Transition Conference
-Participants should include a physician, nurse, social worker, and others who
may have an important role in children’s care such as psychologist, clergy
member, school liaison, or primary care physician.
-Identification of parent and child concerns.
-Inclusion of a pertinent summary of health history, including: name of disease,
date of diagnosis, dateis) and place of treatment, responsible physicianinurse,
chemotherapeutic and/or biologic agents received, primary site and organs
removed at surgery, if any, amount of radiation therapy, and areas treated, if
any, type of bone marrow transplant, if any, and any major treatment
complications (e.g., toxicities).
-Anticipated potential late effects and recommended medical follow-up.
-Review of general health recommendations, according to American Cancer
Society guidelines.
-Names and addresses of organizations providing information, support of
-Methods to notify treatment center of change of address and/or results of tests
performed outside original treatment center.
-Conclusion, including a written summary and Eollow-up plan.
Adapted from Ruccione K. Survivorship needs and issues after treatment for childhood cancer. In:
Proceedings of the Sixth National Conference of Cancer Nursing, American Cancer Society pages 931, 1992.
level of functioning.I3A formal quality of life assessment could be conducted at this point so that families
and providers can develop intervention plans to enhance adjustment. Fifth, the goal should be to refine
and refocus that partnership of team and family to
enhance child health and development. Previous patterns of communicating information, conveying a
sense of shared responsibility between families and
providers, and empowering parents to expect “typical” behavior from their children need to be reinforced
or changed as needed. Families need to be weaned so
that they begin to rely again on their primary health
care provider for most health care services.
Transition from Off -Therapy to Posttreatment
The posttreatment transition begins as patients attain
status as long term survivors. This status has been
defined as either 5 years postdiagnosis and/or 2 years
after completion of therapy without event^.'^,'^ The
posttreatment transition does not have a clear endpoint because it is believed that these survivors should
be observed for life.’m3A specific beginning to this
phase occurs when the treatment team refers the
ChildIadolescent for a systematic long term effects assessment. People enter the posttreatment phase at
various ages (potentially 5 years to early adulthood).
This wide age range influences what patient and family
issues must be addressed.
Specialty clinics are in a strong position to counsel
patients and parents about late effects and to detect
subtle late effects as early as possible given the need
for specialized knowledge of the effects of various
treatment components. Furthermore, the depth of experience in speciality clinics can instill a sense of security among patients and families given their current,
state-of-the-artknowledge base. These specialized settings usually are multidisciplinary and articulate in
some way with the primary treating teams. The objectives of these clinics are to assess the child/adolescent,
to identify problems, to provide education about late
effects, and to provide intervention or referral for
health-related or psychosocial concerns. Some facilities provide treatment for identified late effects, others
refer to appropriate specialists. Reinforcement of
healthy lifestyle choices is a common theme in these
Posttreatment clinic visits are typically longer in
duration than others primarily because the issues that
are raised take longer to discuss and work through.
These clinics are labor intensive for providers given
the need to review voluminous patient records prior
to the visit, discuss plans, identify resources for subsequent services, and provide patient and family education and support. There is a need for well prepared
educational materials for families in a variety of formats for individuals with different learning styles, including print, video, or computer-based instruction.
Such innovations could help to streamline service delivery by allowing information to be given consistently,
accurately, and in a time and place convenient for
the family. Electronic support groups, via the internet,
offer the opportunity for survivors to share information and coping strategies. There is a need for improved access to computer technology, which may occur as it becomes more available through hospitals or
community-based facilities such as schools and public
Given the relative recent advent of long term follow-up clinics, it might be useful for existing programs
to form a consortium to define standards of care, assist
in the development of new clinics, develop curricula
for the education of pediatric hematologists-oncologists, family health practitioners, and others, and work
in concert to demonstrate to third-party payers why
speciality clinics are cost-effective for long term survivors.
Some have suggested that continued monitoring
of cancer survivors in speciality clinics might increase
anxiety and potentially stigmatize a group who are
without disease and only at minimal risk for late effects. One way to minimize potential anxiety and
stigma would be to formulate individualized followup plans that vary with regard to an individual’s late
effects risk status. Unfortunately, at this juncture, the
Transitions in Care/MacLean et al.
full complement of potential late effects remains incompletely defined. Therefore, individual assessments
of patients to determine their particular risk for late
effects is only partially reliable. Late effects research
has established the overall risk for certain aspects of
treatment and risk clearly increases if therapeutic protocols included such agents as radiation, anthracyclines, and bleomycin to name but a few. Ongoing
surveillance is needed to improve the knowledge base
underlying late effects assessment to formulate more
useful individualized risk profiles.
An additional concern is the perception that follow-up clinics primarily have a research mission. The
research question is an entirely separate issue. Although such clinics may provide a venue for late effects research, these clinics clearly provide important,
essential clinical services that are not generally available. Systematic late effects research must be conducted on a large scale, probably by multicenter cooperative groups, with appropriate outside support.
shops, traveling consultants, and practitioner training
Barriers to Transitions
The goal of providing coordinated comprehensive care
is paramount for the multidisciplinary team throughout the course of the child/adolescent’s cancer experience. Long term survival and transitional care present
special challenges.
A basic barrier is a lack of understanding of the
need to acknowledge formally the transitions experienced by the child/adolescent. Health care providers
are often familiar with the benefits of rituals to mark
important milestones in the childladolescent’s development. Fewer health professionals have experienced
the beneficial effects of applying those concepts to
health care transitions. Centers providing formal
methods of acknowledging transitions need to share
their experiences more broadly.
A significant barrier concerns resources. As financial considerations, particularly insurance, continue to exert pressure on patterns of care, access to
Transition from Pediatric Care to Adult Care
‘Thegeneral pediatric literature has debated site of care
specialized evaluation and counseling services may be
questions for young people who experienced chronic
constrained. Individual patients may not receive reimillnesses in their childh~od.’~’~
A consensus has
bursement for survivor and transition services. Health
emerged that there will be a time (generally between
care facilities may be reluctant to start up specialized
18 and 25 years of age) when monitoring and routine
care will need to be transferred to an adult pr~vider.’~
The need for health care provider education is an
There are three primary reasons for this transition.
important barrier. The goal of mainstreaming pediatFirst, the knowledge, skill, and scope of practice of the
ric cancer survivors, after a period of specialized aspediatric team is not likely to be sufficiently broad to
sessment and with essential information loops back to
meet the young adult’s needs. Second, if projections
the treatment team, requires education of communityof survival of pediatric cancer are accurate, the sheer
based practitioners.” These providers come from a
volume of patients achieving survivor status will overrange of health care professions and work in a wide
whelm follow-up clinics. Third, the transition is conrange of settings from school and college health sersistent with the typical developmental progression tovices to public health clinics. Currently, there is no
ward increased personal responsibility for health care
organized plan to identify and meet the needs of these
in an adult context. Possible transition care providers
diverse groups.
include adolescent medicine specialists and internists,
The tradition of pediatric oncology is that parents
family practice physicians, and family nurse pracare partners in care and the ChildIadolescent particititioners. The crucial element is that these professionpates in care as developmentally appropriate. As tranals need to be knowledgeable about childhood cancer
sitions occur, the patient’s responsibility increases.
and late effects. What factors will increase the likeliThe individual adolescent or young adult needs assishood of the general availability of such knowledge? tance to take over roles previously held by parents.
First, families and patients who have successfully
Another barrier concerns unevenness of care. The
made previous transitions will be very active seekers/
late effects community has written extensively about
advocates for a high level of care. Their participation
the physical and psychosocial sequelae of pediatric
in survivor clinics will facilitate or encourage this outcancer and its treatment.18-20
Much of this information
come. Second, the pediatric oncology treatment team
has come from large centers with dedicated programs.
needs to identify appropriate community care providSmaller institutions need to be able to secure consultaers and take an active role in their education. Third,
tion services, possibly by linking to specialists using
ACS can help support this effort on a national level
computer technology, by forming a consortia of faciliby visiting professor programs, national conferences,
ties, or formal referral. Children and adolescents cared
print and video materials, continuing education workfor through pediatric cooperative group protocols and
CANCER September 15,1996 / Volume 78 / Number 6
by multidisciplinary teams at specialized centers are
most likely to receive appropriate long term and transitional care services. Adolescents who are not part
of these systems appear to be at increased risk for
inadequate follow-up care.
Implications for Quality of Life
Our description of transitions in the care of adolescent
and young adult survivors of childhood cancer has
clear relevance for a broader discussion of quality of
life in pediatric oncology. The definition of quality of
life adopted in this workshop directs our attention to
social, emotional, and physical functioning, outcomes
generally not included in evaluations of the effects of
cancer and its treatment. Bradlyn et al.,’l in another
article from this workshop, make a strong case for
the inclusion of quality of life measures as additional
outcomes and discuss a variety of conceptual and procedural issues that must be resolved before this initiative will move ahead. The agenda they propose focuses
on quality of life assessment at various timepoints
such as diagnosis, active treatment, end of therapy,
relapse, and long term survival in an effort to determine the effects of various cancers and therapeutic
approaches on social, emotional, and physical functioning. We believe that an equally worthy goal is to
expand our consideration to include the process of
treatment, thereby including transitions as an important clinical and research focus. Thoughtful implementation of the recommendations listed below
would enhance quality of life of survivors and their
families by decreasing psychologic distress associated
with transitions in treatment, encouraging optimal social and emotional development, and fostering personal responsibility for health. Concurrent research
would establish the significance of the proposed practices in human and economic terms.
We recommend that pediatric oncology teams recognize that transitions are an inherent aspect of
total patient care. The use of transition conferences
may be useful in formalizing the onset of transitions in care and in planning for the transition period.
We recommend that individualized transition plans
be developed for each survivor, that these plans be
updated periodically, and that the plans be shared
with subsequent health care providers.
We reassert the recommendations of previous ACS
workshops that comparable services be available
for adolescents with cancer during all phases of
their illness and for their transition periods.
4) Given the ever increasing population of childhood
cancer survivors, we recommend that the ACS take
a leadership role in educating primary care providers about cancer in children and adolescents and
support funding for research on transition issues
in pediatric cancer relevant to policy and practice.
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