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A Key in the Gateway of Care
The University of Michigan Comprehensive
Cancer Center recently opened a Late Effects Clinic
to address the long-term survivorship issues of U-M pediatric
patients. Following is a recent interview with Marcia Leonard,
R.N., P.N.P., nurse practitioner in the clinic and the driving
force behind its creation.
Why was the Late Effects Clinic started?
When a pediatric cancer patient finishes treatment, they are
seen monthly for the first year to eliminate the worry of
relapse. In the second year they'll usually be seen every
three months and in the third year every six months. After
four to five years we'll switch to a yearly visit. For many
patients these annual check-ups become a social visit or a
request for adult medical care as they move beyond their pediatric
years. We find we are unable to address their needs within
our regular clinic where we have kids who are desperately
ill. Our post-treatment kids would only get a physical and
blood work, or some would say, 'I like coming, I like visiting,
but what are you doing for me?' In reality, there are a lot
of medical issues beyond the cancer going on with these kids.
We're finding more and more that they are left on their own
to cope, with physicians who are unfamiliar with their cancer
treatment history.
How does the Late Effects Clinic help
these patients?
Our work begins before they arrive for their clinic visit.
We've learned that with children we need to know the cumulative
dosages of all of their therapies. This is not always easy
to recreate, but it is key to their follow-up care. Some patients
treated over a decade ago with anthracylines may be predisposed
to heart problems. This is a problem, because I love all these
patients we have treated, I've known them all their lives
but I'm not a cardiologist. They need to be seen by a cardiologist.
In the Late Effects Clinic we function as their gatekeeper.
We can identify problem areas based on their treatment history
and direct them to the specialist who can care for them.
When the patient then visits another
provider, how do they explain the issues the Late Effects
Clinic has identified?
Most of our patients were very young when diagnosed, but even
teenagers do not remember the details of the experience. Every
Late Effects Clinic patient receives a personalized
summary of their treatment history and our recommendations
for their present and future care. The summary includes their
age when diagnosed, the total level of radiation received,
doses and known effects of drugs that were used and any problems
that have occurred. Our recomendations are instructions based
on the problem areas we've identified. Each individual is
told when to return for a follow-up visit, and this will vary.
In older patients we may leave it open - check back in with
us in three years or if there is something you need sooner
let us help you. We continue annual visits for younger kids.
Similar information will also be sent to the patient's healthcare
providers.
What other post-treatment concerns
arise?
In the Late Effects Clinic, instead of focusing only
on the cancer we are looking at the whole life situation.
Our focus has changed. When they were first diagnosed our
major concern was their survival. But survival comes at a
price for these kids. Now, our whole mindset is on these patients
and what's going on in their lives. Some may feel isolated
from their peer groups due to their cancer experience and
some may have growth and fertility concerns. Many are now
having children of their own and want to know if their cancer
or cancer treatments will affect their babies. We help them
find some answers. We can't cure everything, but we can make
everything a little bit better.
The Pediatric Late Effects Clinic
is open to U-M pediatric patients who have completed their
therapy five or more years ago. For more information, please
call (734) 936-9814.
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| Four year-old Rachel Pixley just prior to treatment for rhabdomyosarcoma of the eye orbit |
Rachel during treatment |
"I was very scared when I came for my visit
in the Late Effects Clinic. I came with my friend and my boyfriend.
I was grown up now and did not have mommy and daddy to hold
my hand, so I was nervous. When I got in the room, I remembered
Marcia and she made me feel at home."
-- Rachel Pixley, age 18 14-year cancer survivor
Rachel today at 18.
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