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The Oeffinger Study
by Bruce
D. Shriver. PhD
Editor-in-Chief, ESUN
A landmark study by
Dr. Kevin Oeffinger and his colleagues,
Chronic Health Conditions in
Adult Survivors of Childhood Cancer, was
published in the
October 12, 2006 issue of The New England Journal of
Medicine. Within a few days, articles offering different
insights about the study and its results and conclusions began appearing. Among them are:
The articles undoubtedly began appearing
immediately because of the main and overriding conclusion of
the report, “Survivors of childhood cancer have a high rate
of illness owing to chronic health conditions”.
What was this conclusion based on? It turns out, it was
based on a substantial body of evidence as the
Oeffinger study tracked “the health status of adults who
received a diagnosis of childhood cancer between
1970 and 1986 and compares the results with those
of siblings. We calculated the frequencies of
chronic conditions in 10,397 survivors and 3034 siblings”.
This group of survivors (those who have survived for at
least five years after treatment for childhood cancer) is
the large and geographically diverse cohort followed
in the Childhood Cancer Survivor Study,
CCSS. The
goals of the Oeffinger study were to determine: (1) the
prevalence, incidence and severity of chronic health
conditions in adult survivors of childhood cancer; and, (2)
the risk of chronic conditions in the survivors as compared
with their siblings. The study involved patients who had an original diagnosis of
leukemia, central nervous system tumor, Hodgkin's disease,
non-Hodgkin's lymphoma, Wilms' (kidney) tumor,
neuroblastoma, soft-tissue sarcoma, or bone tumor. The results were not
good: "A severity score (grades 1 through 4, ranging from
mild to life-threatening or disabling) was assigned to each
condition.
Cox proportional-hazards models were used to
estimate
hazard ratios, reported as relative risks and 95%
confidence intervals (CIs), for a chronic condition ...
Among 10,397 survivors, 62.3% had at least one chronic
condition; 27.5% had a severe or life-threatening condition
(grade 3 or 4). The adjusted relative risk of a chronic
condition in a survivor, as compared with siblings, was 3.3
(95% CI, 3.0 to 3.5); for a severe or life-threatening
condition, the risk was 8.2 (95% CI, 6.9 to 9.7). Among
survivors, the cumulative incidence of a chronic health
condition reached 73.4% (95% CI, 69.0 to 77.9) 30 years
after the cancer diagnosis, with a cumulative incidence of
42.4% (95% CI, 33.7 to 51.2) for severe, disabling, or
life-threatening conditions or death due to a chronic
condition." Importantly, the
researchers found that female survivors had a 1.5 times
higher risk of a severe chronic health condition than male
survivors.
Groch noted that
Oeffinger and his colleagues stated that there are several
considerations to consider when interpreting their findings.
She reported that, “First, the conditions were self-reported
without external verification, except for death. Also,
several key chronic conditions, such as late-onset cardiomyopathy, associated with previous anthracycline
exposure, may remain clinically silent for long periods. Other conditions that may be under-reported are
osteoporosis, hypertension, and insulin resistance. A
notable omission in the comprehensive list of chronic
conditions in this study is adverse mental health outcomes,
an important component of morbidity after childhood cancer.”
Rosoff cautions us
by pointing out that, “There is an unavoidable and
noteworthy deficiency in the data from the CCSS cohort. All
the patients were treated before 1986, and there have been
considerable changes in therapy for most childhood cancers
during the succeeding 20 years, often with an escalating
intensity of treatment paralleling an improvement in
survival rates.” Rosoff goes on to say, “At the same time,
we have become increasingly aware of the potential for late
effects and have attempted to incorporate this knowledge
into treatment protocols whenever it is possible to do so
without sacrificing efficacy. It would be expected that
patients who were treated more recently might have an
analogous but different array of long-term complications.
This historical effect argues for establishing another
cohort for future study."
Rosoff further
observes that findings of the study,
"imply that vigorous and long-term monitoring of young
cancer survivors, accompanied by early intervention when
problems arise, is mandatory. There is a dark side to being
cured of cancer as a young person” and that “It would seem
to be incumbent on us to ensure that survivors of childhood
cancer are followed closely by physicians who understand the
effects and outcomes of cancer treatment — who know what
these patients have been through and what kinds of
complications to look for in the future. Sadly, such
follow-up is the exception rather than the rule.”. Among
some very interesting suggestions that Rosoff presents to
the medical community (e.g., incorporating specific training
into residency programs in internal medicine, pediatrics,
and family medicine and developing postgraduate training
fellowships in an adult subspecialty), he suggests that patients be given a
“portable document” (e.g., a smart card) containing a
description of “their treatment, its potential late
complications, and any types of behavior that could diminish
their risk of late effects.”
I recommend that anyone interested in the
late-effects of childhood cancer treatments, read the
Oeffinger Study and the four additional, brief articles
cited above.
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Long Term Effects of Cancer
Treatments
We
have previously reported on the long term effect of cancer
treatments in ESUN
The COG Survivor Guidelines:
A View from the Pediatric Sarcoma Perspective,
by Joan Darling, PhD, ESUN, V2, N3, June 2005. One of the
important resources discussed in Dr. Darling's article is
the Children’s Oncology Group's
Long-Term Follow-Up Guidelines
for Survivors of Childhood, Adolescent, and Young Adult
Cancers. COG summarizes these guidelines as follows:
The Children’s Oncology Group Long-Term
Follow-Up Guidelines for Survivors of Childhood, Adolescent,
and Young Adult Cancers were developed as a
collaborative effort of the Nursing Discipline and the Late
Effects Committee. The purpose of these guidelines is to
provide recommendations for screening and management of late
effects that may potentially arise as a result of
therapeutic exposures used during treatment for pediatric
malignancies. These guidelines represent a statement of
consensus from a panel of experts in the late effects of
pediatric cancer treatment. The recommendations are based on
a thorough review of the literature as well as the
collective clinical experience of the task force members,
panel of experts, and multidisciplinary review panel
(including nurses, physicians, behavioral specialists and
patient/parent advocates). Implementation of these
guidelines is intended to increase awareness of potential
late effects and to standardize and enhance follow-up care
provided to survivors of pediatric malignancies throughout
the lifespan.
The Long-Term Follow-Up Guidelines
were developed as a resource for clinicians who provide
ongoing healthcare to survivors of pediatric malignancies. A
basic knowledge of ongoing issues related to the long-term
follow-up needs of this patient population is assumed. The
screening recommendations in these guidelines are
appropriate for asymptomatic survivors of childhood,
adolescent, or young adult cancer presenting for routine
exposure-based medical follow-up. More extensive evaluations
are presumed, as clinically indicated, for survivors
presenting with signs and symptoms suggesting illness or
organ dysfunction.
In a sidebar in Dr.
Darling's article, we also identified the University of
Michigan's webpage,
Long Term Follow-Up Study.
The webpage describes various aspects of the Childhood
Cancer Survivor Study (CCSS), which they summarize in the
following way:
The Childhood
Cancer Survivor Study (CCSS) was
created to take advantage of that opportunity and to help
discharge that obligation. The CCSS is a component of the
Long-Term Follow-Up Study. A collaborative,
multi-institutional study funded by the National Cancer
Institute, the CCSS is composed of individuals who survived
five or more years after treatment for cancer, leukemia,
tumor, or similar illness diagnosed during childhood or
adolescence. The CCSS, which includes all participants in
the Long-Term Follow-Up Study with a confirmed diagnosis of
cancer, is a retrospectively ascertained cohort of 20,346
childhood cancer survivors diagnosed between 1970 and 1986.
It also includes approximately 4,000 siblings of survivors
who serve as the comparison group for the study. The CCSS
cohort has been assembled through the efforts of 27
participating centers in the United States and Canada. It is
coordinated through the University of Minnesota, Department
of Pediatrics and Comprehensive Cancer Center. Other core
facilities include the Statistical Center, located at the
Fred Hutchinson Cancer Research Center (Seattle); the Biopathology Center (Columbus); and the Radiation Physics
Center at MD Anderson Cancer Center (Houston). Initiated in
1993, the study is funded by a grant from the National
Cancer Institute. For more
information, see
CCSS: A Resource for Researchers
We
also identified in Dr. Darling's article the Survivorship
webpage of
Candlelighters Childhood Cancer
Foundation. Among other things, you can
access a list of Comprehensive Long Tem Follow Up Clinics
from this webpage. Lastly, we identified the
Survivor Issues webpage
of the
Ped-Onc Resource Center.
This is a resource well worth exploring.
In the Odds & Ends Column of the
February 2006 Issue of
ESUN we wrote about
Beyond the Cure, which is a program of
the
National Children's Cancer Society.
It was created for survivors of childhood cancer. Current research
indicates that over two-thirds of childhood cancer survivors
experience at least one "late effect" as a result of their disease
or treatment. Late effects, the results of diagnosis and treatments,
can vary in severity, but may include secondary malignancies, as
well as problems associated with heart, endocrine, sensory or
reproductive systems. Cancer also affects a person emotionally,
developmentally, cognitively, spiritually and socially. Beyond the
Cure program hosts teleconferences on a variety of issues and concerns
experienced by survivors and their families after completion of
treatment for childhood cancer. Beyond the Cure hosts teleconferences
to provide current information from leading national experts without
leaving your home or office. The list of upcoming topics can be
viewed by
clicking here.
In the Research Corner Column of the
October 2004 issue of
ESUN, we reported on the study,The
Impact of Chemotherapy on the Survival of Patients With
High-grade Primary Extremity Liposarcoma,
This article was written by
Eilber, Fritz C., Eilber, Frederick R., Eckardt,
Jeffery, Rosen, Gerald, Riedel, Elyn, Maki, Robert G.,
Brennan, Murray F., Singer, Samuel,and appeared in
Annals of Surgery. 240(4):686-697, October 2004.
Abstract:
Objective: To determine if chemotherapy offers a survival
benefit to patients with large, high-grade, primary
extremity liposarcoma. Summary Background Data: The impact
of chemotherapy on the survival of patients with primary
extremity soft tissue sarcoma is controversial and its
effect on individual histologic subtypes is not defined.
Patient and Methods: Two prospectively collected sarcoma
databases were used to identify all patients with >5 cm,
high-grade, primary extremity liposarcoma that underwent
surgical treatment of cure from 1975 to 2003 (n = 245).
Clinical, pathologic and treatment variables were analyzed
for disease-specific survival (DSS), distant recurrence-free
survival (DRFS) and local recurrence-free survival (LRFS).
Conclusions: In patients with large, high-grade, primary
extremity liposarcoma; DOX is not associated with improved
DSS and IF is associated with an improved DSS. Treatment
with IF should be considered in patients with high-risk
primary extremity liposarcoma.
We are familiar with two online support
groups for survivors of childhood cancer.
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ACOR's
POS (Ped-Onc-Survivors),
mostly for parents |
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ACOR's
LTS (Long-term
Survivors), mostly for survivors
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For survivors of chondrosarcoma,
osteosarcoma, Ewing's bone sarcoma and other bone sarcomas,
we recommend
Adult Bone Cancer Survivors (a.k.a., ABC Survivors).
Mary Sorens, a survivor of parosteal osteosarcoma started
this web site when she wasn’t able to find adult survivors
of bone cancers in similar circumstances as she was going
through her initial diagnosis and treatment. She wasn’t able
to find a mentor to help her with questions about whether
her treatment was the same as others, complications of her
treatment, and what her new life would be like. Thus, she
decided that the best way to right this wrong was to make
sure that future patients were able to find mentors, and
human resources. Survivors post their stories on the
site, and there are online support groups to find such
mentors. The site is specifically limited to adults with
primary bone cancer. It also contains a list of bone
cancer resources.
Finally, we recommend that you read the following three summaries
in the Odds & Ends Column of this issue of ESUN:
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V3N5
ESUN Copyright © 2006 Liddy Shriver Sarcoma
Initiative. |
