[ RadSafe ] Article: Cancer Statistics: Down to a Science

[John Jacobus]

Ever wonder how cancer statistics are complied?

>From "Advance (Newsmagazines) for Imaging and Oncology
Administrators," of 3/24/2006
http://imaging-radiology-oncology-administrator.advanceweb.com/common/Editorial/Editorial.aspx?CC=69089
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Cancer Statistics: Down to a Science
A look at how the cancer registry collects information
to be used for research and public health planning and
evaluation.

By Sarah Lebo 

Last year, more than 563,700 Americans died of cancer,
according to the American Cancer Society. Where did
those numbers come from? And what do they mean to the
future of health care and cancer research? 

The answer to those questions begins with health care
professionals like Barbara Mihelic, LPN, CTR; Jackie
Fitzpatrick, LPN, CTR; Charlotte Gonce, RN, CTR; and
Karen Loos, LPN, CTR. They are among hundreds of
cancer registrars across the country who help the
public better understand the disease and the best
prevention methods by carefully collecting vital,
accurate information on the topic. 

And these health care workers are well aware that they
are making a difference. 

"I've seen an incident increase of melanoma over the
years," says Fitzpatrick, a health data registrar at
Johnson Memorial Hospital, Stafford Springs, Conn.
"There are more people being diagnosed because the
public is more aware of what to look for and what to
do when they see a symptom. The initial statistics
came from cancer registries." 

Data collected by state cancer registries enable
public health professionals to better understand and
address the cancer burden, according to the Centers
for Disease Control. Registries also allow hospitals
to better serve their communities by targeting
awareness, prevention and treatment efforts toward the
types of cancer prevalent in a given region. 

"The cancer registry collects information that can be
used for research as well as public health planning
and evaluation," explains Loos, cancer registrar at
Orange Regional Medical Center, Middletown, N.Y. "The
incidence patterns identify areas for intervention." 

Filling in the blanks
 
The cancer registry field involves management and
analysis of clinical cancer information for research,
quality management or improvement, facility planning
and marketing, long-term follow-up, prevention and
surveillance, survival and outcome data, and
compliance of reporting standards, according to the
National Cancer Registrar's Association. 

"You have to address everything from hair follicles to
toenails in the registry," says Mihelic, manager of
the Monmouth (N.J.) Medical Center cancer registry.
"Most people think registrars just read the chart and
the pertinent information is simply transferred into a
computer database, but there is a great deal of
investigating in the abstracting of a chart to obtain
the required information. The registrar needs to
understand the rules and criteria to interpret the
information." 

When health care workers enter the world of cancer
registry, they are not providing direct patient care.
However, that doesn't mean they lose their identity. 

"I realize that I'm collecting living data, with real
patients," says Gonce, oncology information specialist
at Grandview Hospital, Sellersville, Pa. "I clearly
understand the treatments these patients are receiving
and what happens to them. The outcome is something I
really care about and want to know." 

At times the registry and patient care worlds
intersect. For instance, Loos' office is located on
the hospital's oncology floor, allowing her contact
with the patients, nursing staff and doctors. “This
communication is essential to provide quality data,"
she notes. 

Providing accurate information is the chief
responsibility of the cancer registrar, who begins her
busy day accessing the computer program that includes
the form fields she'll need to complete. She then
peruses through hospital pathology reports to
determine if it is worthy of registry input. Basal
cell cancers, for instance, are not reported in New
Jersey and Connecticut. 

If the report falls within the parameters of the state
registry, the registrar begins entering the data in
its simplest form—patient names and numbers. The
listing of patients and cases is called the suspense
file. After six months, the items in suspense are
fully entered into the system to become an abstract. 

Abstracting involves pulling the entire patient chart
and filling in the blanks presented by the computer
program. 

"The abstract is actually a capsule form of the entire
hospital stay or episode in which the patient was
diagnosed and the first course of treatment was
planned," says Fitzpatrick. "It includes demographics,
family history, where the cancer originated, what
tests were done in the clinical work up, and the
staging process." 

"We allow six months to complete this, so all the care
and treatment is taken care of and you're not going
back and forth inputting all the information," Mihelic
adds. 

Every so often—monthly for some registrars, biweekly
for others—abstracts are transmitted to the state
registries. Loos, who handles 1,100 cases annually,
submits abstracts to the state every other week, while
Fitzpatrick, with 275 cases annually, submits monthly.


Catalyst for change 

Some registrars are involved on a hospital's tumor
board, a team of doctors that meets to discuss
different cancer cases and shares results or
questions. Registrars often serve as secretaries to
meetings and/or choosing cases and organizing the
necessary patient information for meetings each month.
Gonce has been involved in several committees at
Grandview including cancer control, institutional
review board and Cancer Survivor's Day. 

"Being visible in different programs has enabled me to
promote the registry and the educational tools I can
offer," Gonce says. "Physicians and administration use
my information regularly, from trends to demographics,
risk factors, staging and treatment, outcomes, and
even National Comprehensive Cancer Network [an
alliance of 19 of the world's leading cancer centers]
guideline compliance." 

"The primary goal of a cancer registry is to improve
the overall cancer care for patients," Fitzpatrick
added. "The education that comes from the numbers we
produce helps us decide how to move forward." 

Sarah Lebo is an assistant editor at ADVANCE.

+++++++++++++++++++
"Those who corrupt the public mind are just as evil as those who steal from the public purse."
Adlai Stevenson

-- John
John Jacobus, MS
Certified Health Physicist
e-mail:  crispy_bird at yahoo.com

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