A Multidisciplinary Model of Care for Childhood Cancer Survivors With Complex Medical Needs

Abstract

Long-term survival for children with cancer is often achieved at a considerable cost in terms of medical and psychological sequelae. Although many survivors are well and require only routine follow-up and surveillance, a cohort of survivors require comprehensive management of complex, chronic medical issues by multiple subspecialists. For these survivors, care delivered within the context of an annual visit to a traditional hospital-based late effects clinic or by a primary care physician in the community is often not adequate. A specialized clinic was implemented at The Children's Hospital of Philadelphia that crosses disciplines and provides same-day, same-clinic access to oncology/survivorship, endocrinology, pulmonology, cardiology, nutrition, and psychology. This multidisciplinary approach supports clinical efficiency and fosters seamless patient-centered care both for patients with identified late effects and for those with the highest risk for problems because of intense treatment exposures. The model is described with a focus on clinic structure/process, clinical outcomes, and benefits to survivor, health care provider, and institution. The diverse roles for nursing within this model are highlighted.

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Journal of Pediatric Oncology Nursing
DOI: 10.1177/1043454207311741
2008; 25; 7 Journal of Pediatric Oncology Nursing
Claire A. Carlson, Wendy L. Hobbie, Melinda Brogna and Jill P. Ginsberg
A Multidisciplinary Model of Care for Childhood Cancer Survivors With Complex Medical Needs
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Journal of Pediatric Oncology Nursing, Vol 25, No 1 (January), 2008: pp 7-13 7
A Multidisciplinary Model of Care for Childhood
Cancer Survivors With Complex Medical Needs
Claire A. Carlson, BSN, RN
Wendy L. Hobbie, MSN, RN, CRNP
Melinda Brogna, BSN, RN
Jill P. Ginsberg, MD
© 2008 by Association of Pediatric Hematology/Oncology Nurses
DOI: 10.1177/1043454207311741
Long-term survival for children with cancer is
often achieved at a considerable cost in terms of med-
ical and psychological sequelae. Although many sur-
vivors are well and require only routine follow-up
and surveillance, a cohort of survivors require com-
prehensive management of complex, chronic medical
issues by multiple subspecialists. For these survivors,
care delivered within the context of an annual visit to
a traditional hospital–based late effects clinic or by a
primary care physician in the community is often not
adequate. A specialized clinic was implemented at
The Children’s Hospital of Philadelphia that crosses
disciplines and provides same-day, same-clinic
access to oncology/survivorship, endocrinology, pul-
monology, cardiology, nutrition, and psychology. This
multidisciplinary approach supports clinical effi-
ciency and fosters seamless patient-centered care
both for patients with identified late effects and for
those with the highest risk for problems because of
intense treatment exposures. The model is described
with a focus on clinic structure/process, clinical out-
comes, and benefits to survivor, health care provider,
and institution. The diverse roles for nursing within
this model are highlighted.
Key words: childhood cancer, late effects, survivor-
ship, long-term follow-up, model of care
D
ue to advances in the diagnosis and treatment of
pediatric malignancies over the past 4 decades,
the number of long-term survivors of childhood can-
cer continues to grow. With the overall cure rate for
pediatric malignancies now approaching 80%, current
estimates indicate that there are more than 270 000
childhood cancer survivors in the United States and
that 1 in every 640 young adults is a survivor of a
pediatric malignancy (Hewitt, Weiner, & Simone,
2003; Meadows, 2006; Ries et al., 1999). Although
this number of survivors is remarkable, long-term
survival for children with cancer may be achieved at
a considerable cost in terms of medical and psycho-
logical sequelae. Recently published data using the
cohort from the Childhood Cancer Survivor Study
indicate that among 10 397 survivors, 62.3% have at
least 1 chronic health condition and 27.5% have a
condition that is considered severe or life-threatening.
Among survivors, the cumulative incidence of a chronic
Claire A. Carlson, BSN, RN is a research nurse with the Cancer
Survivorship Program at The Children’s Hospital of Philadelphia. She
coordinates the Multidisciplinary Cancer Survivorship Clinic. Wendy L.
Hobbie, MSN, CRNP, is the nurse coordinator for the Cancer Survivorship
Program at The Children’s Hospital of Philadelphia. Melinda Brogna,
BSN, RN, is a staff nurse in the Oncology Outpatient Clinic at The
Children’s Hospital of Philadelphia. She is the primary clinic nurse for the
Multidisciplinary Cancer Survivorship Clinic. Jill P. Ginsberg, MD, is an
attending physician in the Division of Oncology at The Children’s
Hospital of Philadelphia. She is associate director of the Cancer
Survivorship Program. Address for correspondence: Claire A. Carlson,
BSN, RN, Cancer Survivorship Program, The Children’s Hospital of
Philadelphia, 34th Street and Civic Center Blvd, Wood Building, Room
4310, Philadelphia, PA 19104; e-mail: carlsoncl@email.chop.edu.
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Carlson et al
health condition reached 73.4% (95% confidence
interval, 69.0-77.9) 30 years after the cancer diagno-
sis, with a cumulative incidence of 42.4% (95% con-
fidence interval, 33.7-51.2) for severe, disabling, or
life-threatening conditions or death attributable to a
chronic condition (Oeffinger et al., 2006).
Specific challenges for survivors with multiple
chronic health conditions include appointments with
subspecialists on varying days of the week, missed
time from school and work for medical appointments,
and difficulty coordinating necessary follow-up visits
and diagnostic testing across multiple specialties and
ancillary providers. Survivors also face the monu-
mental task of facilitating seamless communication
between different providers involved in their care.
A variety of models are available for delivering
care to survivors, and the best model often varies
from patient to patient. Those patients with the most
complex treatment histories and at-risk treatment
exposures require a more specialized level of care,
often multidisciplinary, throughout their lives
(Friedman, Freyer, & Levitt, 2006; Wallace et al.,
2001). The multidisciplinary concept is not new and
is accepted among professionals in both survivorship
and other pediatric arenas as the ideal way to deliver
care to patients with complex, often chronic, health
care needs. However, translating a multidisciplinary
philosophy into clinic practice can be a challenge. In
current practice, the term multidisciplinary is not
always used to reference a specific model for clinical
care. Rather, the term often implies a close relation-
ship with an established network of pediatric and
adult subspecialists for referrals as needed; it does not
necessarily mean that specialists are integrated into
the clinic visit (Bhatia & Meadows, 2006; Hudson
et al., 2004; Oeffinger, 2003; Oeffinger & McCabe,
2006). Some programs in the United States and other
countries are using multidisciplinary clinics for sur-
vivorship care (Hinkle et al., 2004; Rigon, Lopes,
Latorre, & de Camargo, 2003; Skinner, Wallace &
Levitt, 2006; Taylor et al., 2004). A recent survey of
24 long-term follow-up programs in the United States
and Canada indicated that about 21% of those sur-
veyed included other subspecialists in their clinic
such as radiation oncology, endocrinology, cardiology,
and neurology (Aziz, Oeffinger, Brooks, & Turoff,
2006). The logistics of clinic operation and the level
of subspecialist involvement in clinical care in these
programs are not well described in the literature. A
Multidisciplinary Cancer Survivorship Clinic currently
in operation at The Children’s Hospital of Philadelphia
is described here with a focus on clinic structure, care
delivery, and benefits to survivor, health care provider,
and institution.
Clinic Structure and Process
A multidisciplinary clinic model was piloted at
The Children’s Hospital of Philadelphia beginning in
January 2006. The primary goal of the program was
to provide a specialized clinic within a cancer sur-
vivorship program that crosses disciplines and pro-
vides same-day, same-clinic access to oncology/
survivorship, endocrinology, pulmonology, cardiology,
nutrition, and psychology. Figure 1 illustrates the
overall multidisciplinary model.
The clinic is funded by the Department of
Pediatrics Chair’s Initiatives as part of a hospital-wide
effort to promote the development of new and innova-
tive ways to provide care that places the patient at the
center of every hospital experience. Funding provides
salary support for each of the specialists involved in
the clinic, for the nurse coordinator, and for adminis-
trative tasks associated with clinic operations.
The Multidisciplinary Cancer Survivorship Clinic
is held once per month. All patient visits are held in
the oncology clinic. Survivorship, psychology, and
nutrition providers see patients throughout the day,
and the other specialists hold half-day clinics.
Appropriate patients are identified for this clinic from
multiple sources including those patients known to
the survivorship team from previous visits, patients
known to one of the participating subspecialists, and
from new referrals within the Division of Oncology
and other divisions throughout the hospital.
Patient appointments are coordinated centrally by
a nurse who, in collaboration with the oncology prac-
titioner, reviews the patient’s history and treatment
exposures, determines the specialists’ visits that are
needed, and schedules the appropriate risk-based
screening tests per the Children’s Oncology Group
guidelines (Landier et al., 2004). Specialist visits are
arranged both for those patients with known late
effects and for those patients at the highest risk for
late sequelae because of specific treatment exposures.
For example, a patient who received total body irradia-
tion or whole lung irradiation would get a pulmonary
screening visit; likewise, a patient who received a
large dose of anthracyclines (>300 mg/m
2
) would
8 Journal of Pediatric Oncology Nursing 25(1); 2008
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receive a cardiology screening visit. All patients are
scheduled for nutrition and psychology visits unless
the parent or patient does not want to use these serv-
ices. Oncology, endocrinology, cardiology, and pul-
monology each bill separately, and reimbursement
for provider visits and ancillary services (labs,
echocardiograms, pulmonary function tests) has been
collected at a rate equivalent to the overall hospital
collection rate. Nutrition and psychology are not bill-
able services in the current clinic structure.
On the morning of the clinic, the multidisciplinary
team reviews the patient’s care plan at a preclinic
conference. Providers are assigned to a room, and
patients move from provider to provider. Each
patient has a “shadow chart,” which contains a sum-
mary of his or her cancer history and treatment expo-
sures, pertinent testing results and correspondence,
and encounter forms for documenting each special-
ist’s assessment and plan. The shadow chart follows
the patient throughout the day so that providers are
aware of what has transpired in previous visits. This
chart helps with continuity of care and facilitates the
delivery of a consistent message to the survivor
across disciplines.
During the course of the clinic visit, an active
problem list for each patient is generated, interven-
tions are recommended, and a plan for follow-up is
developed. The plan of care for each patient is dis-
cussed in detail in the multidisciplinary postclinic
conference. This provides an opportunity for all of
the subspecialists to review their findings and recom-
mendations and allows for continuity of care across
disciplines. Finally, a summary letter, which blends
the patient’s oncology history with the visit notes
from all of the subspecialists who encountered the
patient, is developed. Clinic providers dictate their
exam findings, impression, and plan according to
their normal practice, and then the components are
incorporated into a comprehensive letter that includes
the survivor’s cancer history and treatment exposures.
The letter is shared with all of the providers involved
in the survivor’s care, the primary care physician, and
the patient. Any required interval follow-up testing is
coordinated by the survivorship team.
Clinic Outcomes
Utilization
During the first 18 months of clinic operation
(January 2006 to June 2007), 130 patients used the
Multidisciplinary Cancer Survivorship Clinic, account-
ing for 556 specialty encounters and 403 ancillary
encounters. The largest proportions of patients using this
level of service were survivors of brain tumors (25%),
neuroblastoma (24%), and acute lymphocytic leukemia
(22%) (Figure 2). Twenty-five percent of patients were
Model of Care for Childhood Cancer Survivors
Journal of Pediatric Oncology Nursing 25(1); 2008
9
Late Effects Visit
Treatment History
Physical Exam
Risk-Based Screening
& Counseling
Survivor
One Appointment
One Location
Same Day Service
Subspecialist(s) Visits
Oncology (1 MD, 1 APN)
Endocrinology (1 MD, 1 APN)
Pulmonology (1 MD)
Psychology (1 PhD)
Cardiology (1 MD)
Nutrition (1 Registered Dietician)
Anticipated Ben efits
Patient
*Improved access to multiple subspecialists
*Less time lost from school and work
*Improved communication between late effects team and subspecialists
Healthcare Provider
*Opportunity for collaborative clinical care
*Seamless provider communication and continuity of care
*Enhanced efficiency and clinical effectiveness
*Rich environment for collaborative research
*Environment to train health care providers regarding late effects
Institution
*Expansion of service line
*Increased patient volume/n ew referrals
*Improved patient (customer) satisfaction
Figure 1. Multidisciplinary Model for Care of Survivors With Complex Health Care Needs
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Carlson et al
treated for relapse with intensive chemotherapy, and
43% had received stem cell transplant.
Referrals Without Follow-up
As part of the outcome metrics for the clinic, we
systematically tracked patients over the first 18
months of clinic operation who were referred in the
past to one of the participating subspecialists but did
not follow through and were subsequently captured
within the multidisciplinary clinic visit. Anecdotally,
we had found that it was not unusual to refer a patient
to a subspecialist and then find out at next year’s late
effects visit that this patient never saw the physician
for a consult. Twenty-six of the 130 patients (20%)
who used the multidisciplinary clinic were identified
as past failure to follow up on a referral to endocrinol-
ogy, pulmonology, or cardiology. The availability of a
multidisciplinary clinic may help to reduce the
instances of sporadic patient follow-up and, in turn,
will improve the clinical care for these survivors.
Identification of New Problems
Identification of new medical problems was also an
advantage of the multidisciplinary approach. An inte-
grated team of subspecialists may allow for earlier
diagnosis of certain late effects or, at minimum, earlier
identification of more subtle changes in diagnostic
testing or physical manifestations of changes in organ
function. New problems identified during these clinic
visits included growth hormone deficiency/resistance,
hypothyroidism, hypogonadism, advanced bone age,
restrictive lung disease, left ventricular dysfunction,
and prolonged QTc interval. Table 1 summarizes the
number of patients within each subspecialty who had
a new medical problem identified at their clinic visit.
Although it is true that some of these issues would
have likely been identified within the context of the
oncology visit, the advantage here is having immedi-
ate access to the clinical expert to plan for further eval-
uation and intervention.
Patient and Family Satisfaction
A patient satisfaction survey was sent out after
each clinic to elicit feedback about the multidiscipli-
nary experience. Surveys were anonymous to ensure
that families would feel comfortable providing us
with their thoughts about what worked and where
improvements were needed. Benefits identified by
patients and families included a reduction in the time
needed to schedule multiple medical appointments
and fewer missed days from work and school.
Patients who used the clinic felt that their treatment
plans were now more coordinated across specialties;
86% indicated that new issues about their child’s
health were identified during the multidisciplinary
visit, and 100% would use the clinic again.
Nursing Roles
The role of nursing in the care of childhood cancer
survivors is well established in the literature (Fochtman,
1995; Gibson & Soanes, 2001; Harvey, Hobbie, Shaw,
& Bottomley, 1999; Hobbie & Hollen, 1993; Kolb
Smith, 2002; Ruccione & Fergusson, 1984). In the
early evolution of long-term follow-up clinics, the
advanced practice nurse was central to clinic develop-
ment, clinical care, patient education, and research.
10 Journal of Pediatric Oncology Nursing 25(1); 2008
22%
9%
2%
6%
25%
24%
2%
7%
3%
ALL
AML/JCML
Mixed Lineage
Leukemia
Anemia/
Other Heme
Brain Tumor
Neuroblastoma
Retinoblastoma
Lymphomas
Ewing’s
Sarcoma
Figure 2. Patients by Diagnosis.
NOTE: ALL = acute lymphocytic leukemia. AML = acute myeloge-
nous leukemia. JCML = juvenile chronic myelogenous leukemia
Table 1. Patients With New Problems Identified
No. of Patients With a New
Identifying Medical Problem Identified At
Subspecialist Multidisciplinary Clinic Visit
Survivorship 31
Endocrinology 40
Pulmonary 23
Cardiology 16
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Hobbie and Hollen (1993) described a model for the
advanced practice nurse role in late effects care that
not only encompassed specialty care provider, educa-
tor, and researcher but also included program manager
and consultant. These roles have continued through
nursing’s rich history in providing care to long-term
survivors and are evident in this multidisciplinary
approach to survivorship care. Roles for nursing in the
multidisciplinary model are not limited to the
advanced practice nurse; there are also opportunities
for registered nurses with varying levels of education
and experience. Four major nursing roles can be
defined in the multidisciplinary clinic, and each is
essential to the clinic’s overall success and to provid-
ing the ideal patient experience (Table 2).
Discussion
For patients with multiple late effects and for
whom multiple subspecialists are required to manage
their health care needs, an annual visit to a local
practitioner or to a traditional late effects clinic is not
likely to be sufficient. Proper follow-up care for this
cohort of survivors requires the coordination of mul-
tiple outpatient visits with one or more subspecialists.
This level of care necessitates additional trips to the
hospital and often places a significant strain on both
patient and parent, who may have to negotiate com-
plex and disjointed hospital infrastructure to schedule
appointments and appropriate screening tests. These
survivors may also often miss multiple days from work
or school to accommodate medical appointments
throughout the year. Regardless of parental or patient
expertise in navigating the health care system, the
current structure of survivorship care within our insti-
tution fell short of providing an ideal patient experi-
ence for some of our more complex patients. As a
result, necessary follow-up with subspecialists was
sporadic or, in some cases, missed entirely.
The breadth and consistency of specialist involve-
ment and the comprehensive level of service provided
by the multidisciplinary model at The Children’s
Hospital of Philadelphia described here have shown
Model of Care for Childhood Cancer Survivors
Journal of Pediatric Oncology Nursing 25(1); 2008
11
Table 2. Nursing Roles in Multidisciplinary Approach to Survivorship Care
Nurse Coordinator Outpatient Clinic Nurse Advanced Practice Nurse Research Nurse
Contributes to overall business
plan for clinic
Oversees administrative tasks
Communicates with ancillary
staff providing service to the
clinic
Prepares patient summary with
pertinent cancer history and
treatment exposures
Schedules risk-based screening
and subspecialist visits for
patient
Educates patients and families
regarding potential late
effects and the importance of
follow-up care
Acts as resource for
information on insurance
and referrals
Serves as primary point of
contact for patients, families,
and members of the care
team at clinic visit
Coordinates follow-up
appointments and testing
according to multidisciplinary
plan of care
Maintains patient flow
Provides direction for patients
and providers during clinic
visit; keeps patient and team
on track
Acts as core clinical liaison
between patients and health
care team
Answers questions and
educates patients and
families
Educates nursing staff
regarding late effects
Brings nursing perspective to
multidisciplinary clinic
rounds
Acts as hands-on care provider
with clinical expertise on
care of childhood cancer
survivors
Coordinates patient plan of
care in conjunction with
other subspecialists
Serves as clinical “point
person” for patients and
families
Participates in
multidisciplinary clinic
rounds
Provides postclinic follow-up
and communication with
patients and families (testing
results, plan of care, referral
to other specialists as
needed)
Collaborates with team to
generate research
questions/ideas and
participates in ongoing
research studies
Maintains regulatory
documents for late effects
studies
Identifies and recruits eligible
patients to late effects
research studies
Acts as data manager for open
studies
Collaborates with team to
generate research questions
and ideas
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Carlson et al
promise in the ability to improve care for long-term
survivors with complex medical needs. By providing
same-day, same-clinic access to multiple subspecial-
ists with survivorship expertise, the program supports
clinical efficiency and fosters seamless patient-
centered care both for patients with identified late
effects and for those with the highest risk for prob-
lems because of intense treatment exposures.
The multidisciplinary clinic environment also pro-
vides fertile ground for collaborative research and
offers a unique way to identify research questions,
which can affect how survivors with chronic and
complex long-term medical needs are monitored and
cared for as they move through their life span. Pre-
and postclinic conferences offer an ideal setting in
which to pinpoint potential trends in patient outcomes
and to classify and describe late effects in specific
patient populations. There is also the opportunity to
collect pertinent clinical data across disciplines and to
catalog that information in an organized manner for
future research queries. In some cases, at-risk patients
are seen before any overt signs of disease develop.
This fosters the type of prospective longitudinal stud-
ies described by Bhatia and Meadows (2006), which
could allow clinicians to begin to understand the
pathogenesis of certain outcomes of interest, laying
the groundwork for potential intervention studies in
the future. The multidisciplinary clinic also provides
an ideal setting in which to educate and train health
care professionals in the late effects of cancer therapy
and to potentially cultivate early interest of residents
or fellows in other specialties in the issues facing can-
cer survivors.
Benefits of the model can be found at multiple lev-
els. At the patient level, survivors are able to minimize
the amount of time they need to give to medical
follow-up and maximize the amount of clinical care
that they can obtain in a single clinic visit. For the
health care provider, it is a unique opportunity to pro-
vide collaborative care for a complex patient popula-
tion and to conduct research studies with a population
of survivors at the greatest risk for long-term prob-
lems. This is particularly true for nursing and high-
lights how the profession continues to play a vital role
in survivorship care. From an institutional perspective,
the clinic has shown the ability to provide an ideal
patient and family experience. It is our hope that the
multidisciplinary approach will demonstrate utility
beyond survivorship and will provide a model of care
for children and young adults with other chronic and
complex health care needs. Future areas of research
include more formalized assessment of the impact of
a multidisciplinary model of care on health outcomes,
utilization of health care services, and the potential
cost savings of providing care in this manner.
Acknowledgments
We would like to thank Alan Cohen, MD, and the
Department of Pediatrics, for their support of this
clinic. We would also like to thank our subspecialist
collaborators: Thomas Moshang, MD, Sherry Tsai,
CRNP, and Diana Kong, CRNP, Division of
Endocrinology; Samuel Goldfarb, MD, Division of
Pulmonary Medicine; Elizabeth Goldmuntz, MD,
Beth Kaufman, MD, and Maryanne Chrisant, MD,
Division of Cardiology; Mary T. Rourke, PhD,
Psychology; Nancy Sacks, RD, and Sue Ogle, CRNP,
Nurse Manager, Outpatient Oncology Clinic.
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Journal of Pediatric Oncology Nursing 25(1); 2008
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