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Hi, I'm Lynne Padgett and I'm a Rehabilitation Psychologist here
at the National Cancer Institute.
I do work in two broad areas: Cognitive effects of cancer and cancer treatments,
and psychosocial distress and distress screening related to cancer.
It's very common for people for people to say: "well of course you're stressed,
or course you have distress, you have cancer."
But what we know is that distress is a broad global concept and recent calls
to implement distress screening in cancer populations have received mixed reviews.
So there is a large body of evidence that's missing in this area.
Some of the questions that we have are related to measurement.
So distress in cancer is this broad global construct that includes emotional problems,
social problems, cognitive problems, behavioral problems, and spiritual or existential angst.
That's a huge concept- how do we measure it?
What domains are most important for patients?
The next thing is how do we screen for that?
Screening has a very specific definition within the medical literature
and distress screening may or may not fit
under that current medical conceptualization of screening.
So there is a tension there and we need to figure out how best to use provider time
and patient time both in screening and what the outcomes of screening are.
We want to explore looking at distress screening not as point in time, but rather as a process
that looks at detection, assessment and management.
I have two main projects right now, one in each area.
In the domain of cognition, we are working on a project that's looking
to link neurodevelopmental and health outcomes to children
who were exposed to cancer treatment in utero.
So we are looking at databases of pregnant women and trying
to link those women to their child's birth.
And looking at outcomes beyond birth.
Hopefully onto neurodevelopment, motor development, cognitive development,
any kinds of cardiac toxicities or other issues that may arise
and then following these children through to school age.
The second project is in that area of distress.
As we look at measures for distress screening there are a plethora of them
and they cover a variety of different constructs.
There's an inherent tension in that some sets of measures tend to be used by clinicians
and some sets of measures tend to be used by researchers.
Part of our current project is called GEM Distress Management.
Grid Enabled Measures, or GEM, is a wiki based platform that NCI has put together
that allows users to register and then enter instruments.
For us, those measurements would be things you use for distress measurement and screening.
Once you enter those measures or put a link to the PDF, we gather user ratings.
We are hoping through this initiative to begin to push towards data harmonization and be able
to start to facilitate research both on the salient items that we need to assess
when we are looking at distress, as well as gain some clarity
on what kinds of constructs people are using.
If you have any interest in cancer related cognitive changes, or distress screening
as it relates to cancer care- I'd love to talk to you.
So please feel free to go to the NCI website-you can look me up under Lynne Padgett -
shoot me an email, give me a call and we'll set up some time to chat about your ideas.