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The Pat Lyons Post
Effects Study
One of the great medical success stories of the late 20th
century has been the dramatic improvement in the outcome and prognosis for
children diagnosed with malignant diseases. From a pre-chemotherapy
historical survival of about 10%, the cure rate for childhood malignancies
has now risen to ~77%, a far cry from the day when a diagnosis of cancer in
a child was a death sentence. There are now an estimated 200,000 pediatric
cancer survivors alive today in the United States, a number that continues
to rise with the success rate.
While these results have been gratifying, this dramatic
improvement has come at a cost to the child and family. Many of the
diseases require a very intense treatment regimen that combines surgery,
radiation, and chemotherapy. The role for very intense combined
chemotherapy/radiation with stem cell rescue has expanded as more diseases
have been found to be effectively treated by this technique, again leading
to potentially more adverse effects. The diseases and treatments often
cause many serious, and at times, life-threatening complications. Adverse
effects can be seen in every organ system, and while usually reversible,
sometimes leave the patient with a new chronic problem or disability.
As the number of long-term survivors of childhood
malignancy has increased and former patients are living longer;
unanticipated problems have surfaced in many survivors. Most of our current
treatments, although benefiting the patient overall, will produce some
measure of adversity, such as cardiotoxicity, neurocognitive problems,
premature menopause, sexual impairment, infertility, chronic fatigue, pain
syndromes, and second malignancies. When a child is treated for his or her
cancer at a very young age there is a greater risk of developing some of
these problems – cancer and its treatments clearly have greater potential
long-term effects when children are treated during period of rapid growth
and development. Very late cardiac and pulmonary complications have been
increasingly reported during the past several years, raising the fear that
some milder side effects in fact are progressive and will have a greater
negative impact as the patients age.
Research has also shown that many survivors and their
families’ experience significant adverse psychosocial outcomes long after
treatment ends, including poor quality of life, fear of recurrence, poor
self-esteem, anxiety and depression, job lock or loss, employment and
insurance discrimination, body-image disturbances, relationship
difficulties, and financial hardship. The transition from “cancer fighter”
to “cancer survivor” is a period that is often marked by anxiety and
uncertainty. With the cessation of chemotherapy, concern about recurrence
and secondary cancers is common. Patients and their families frequently
present with psychiatric symptomatology, including sleep difficulties,
hypervigilance to future trauma, emotional numbness and shock reactions,
changes in appetite, concentration and frustration tolerance, and
interpersonal difficulties.
This cluster of psychiatric symptoms is found among
individuals suffering from Post Traumatic Stress Disorder (PTSD), which is a
psychiatric condition that may require psychotherapy.
Academic difficulties, both in the school setting as
well as during the years well past graduation, are becoming more prominent
in the population of pediatric oncology survivors. A problem often not
addressed is the unique educational support needs of children diagnosed with
cancer. There has been much discussion of the unpredictability in the
availability and quality of tutoring during treatment and disparity in the
process for integrating children back into the educational system following
treatment. School systems are often ill equipped to deal with chronic
conditions experienced by pediatric cancer survivors. Parents often must
struggle to get special accommodations for cognitive dysfunctions. There
are also many challenges posed by interrupted attendance as a result of
post-treatment effects and care requirements. Cognitive limitations
relating to short-term memory, retrieval of information and mathematical
skills are reported neuropsychological deficits seen among patients treated
with particular medications. In addition, poor handwriting, spelling and
reading comprehension are also reported to be prevalent. Acceptance into
college or university is compromised by lower grades, poor attendance
history, and feelings of learned helplessness. Knowledge of and accessing
the appropriate educational and psychological services is, therefore,
crucial in order for any and all late effects of treatment to be properly
addressed and ameliorated. It is quite clear that while the overall quality
of life for most survivors is generally very good, many patients have
developed debilitating problems that have left them unable to function
normally in day-to-day living.
Despite the fact that there clearly is an increased
need to follow childhood cancer survivors closely for a long period of time,
there is no organized structure to deal with the myriad problems that these
patients may encounter. Developing a better system for coordination of
post-treatment, both in terms of documenting medical history and
coordinating follow-up among primary care physicians, specialists, and other
health providers has become an important national goal. Childhood cancer
survivors have a unique medical history, including participation in clinical
trials, that is critical to communicate accurately. Their experiences have
often made it difficult for internists and other adult specialists to
adequately follow this group of patients since many of the treatments and
complications are unfamiliar to those outside of the pediatric setting.
Many former pediatric oncology patients describe the
difficulty of going to see multiple specialists post-treatment – including
oncologists, endocrinologists, dermatologists, neurologists, cardiologists,
psychiatrists, and dentists. Adding to this burden is the unwillingness of
many insurers and third party payers to ease the transition that many
patients have to make in dealing with numerous medical problems. Finally,
many patients are saddled with financial and employment issues that they can
not address adequately by themselves.
Program Proposal:
There clearly is a great need to set up a structured
system to assist and help coordinate the complex array of services required
by these individuals. Education and information sharing about these
problems and how to deal with them must be a priority for this patient
population. Just as the children are prepared for school reentry at younger
ages, the older patient must be prepared in a similar fashion to deal with
life beyond school, particularly when it may be accompanied by chronic
medical problems. There has been nearly universal desire among survivors
for better information and communication regarding long term effects of
cancer treatment. Survivors describe considerable variation in what
information about long-term effects is shared, and how it is shared, clearly
indicating a need for an improved systematized approach.
Our goal is to create a comprehensive “survivorship”
health program where survivors can go for information, resources, and
support without having to relive their treatment experience. The thrust of
the program is to focus on the health and life of a person with a history of
cancer beyond the acute diagnosis and treatment phase. This A team of
pediatric oncologists will spearhead this long-term follow-up program,
consisting of nurses, psychologists and social workers. Depending upon the
age at diagnosis and the type of therapy and malignancy the patient
received, an organized approach will be utilized to educate the patient with
regards to existing and potential long term adverse effects. There will be
a coordinated plan of periodic physical exams, referrals to specialists as
needed, it becomes that much more crucial in identifying a problem at an
early stage. Early intervention can be very crucial in maintaining a good
quality of life.
Psychosocial or behavioral interventions can improve
patients’ health-related quality of life, functioning and even medical
status, thus making them a high priority of the program. Continuous,
improved access to support groups for children and families appear vital to
families coping with the long term effects of childhood cancer, and will be
offered to those desiring to share their experiences and problems with
others. Health damaging behavior – including tobacco use, lack of regular
exercise, poor nutritional habits and avoidance of sun protection – are all
problems that afflict this patient population and can be influenced by
proper education.
Educational assistance and counseling are critical for
the younger child, teenager, and young adult. The patient’s progress in the
educational world will be looked at critically to ensure the best chance of
achieving an education that will allow for functioning at the highest levels
of society. Job counseling and assistance will be a necessary component of
the program to aid those who have had difficulty finding steady employment.
Legal advise will also be offered to help deal with patients’ rights that
may be curtailed unfairly.
As an additional benefit of this comprehensive program,
knowledge about the chronic or delayed complications of cancer and its
treatment or care can be used to improve our understanding of the biology of
the disease and lead to the design of novel, less toxic treatments. It is
hoped that with further experience and study of this patient population we
will be helping not only those already treated, but future generations of
patients who suffer from similar diseases.
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