Wednesday, November 14, 2018

National Coalition for Cancer Survivorship Study on Quality of Life Measures

The National Coalition for Cancer Survivorship is a patient-centric organization that advocates for quality care for anyone touched by cancer. The goal is to bring about policy change on a national level. They were recently awarded a grant  to study "Return to Functional Status: Patient-Led Cancer Outcome Measurement". What this means is the NCCS will be undertaking a unique study to look at Quality of Life measures after treatment. Nothing like this exists today.  Here is a link to more information about the NCCS Study.

The study will be patient and caregiver driven. The NCCS recognized the need to have representatives from across the cancer spectrum on the study committee, including a patient who has a chronic or incurable cancer, recognizing that there may be unique needs from someone who is in perpetual treatment. 

Well, to my surprise the NCCS asked if I would be on the committee. I was honored to say the least. The study will be a year and half effort and work has already started.  In February the committee will be convening in Washington DC to review efforts to date.

For one of the early efforts, I am asking folks to provide their input.  I have four questions for which we could use patient, survivor, or advocate's perspective.  I'm trying to figure out the easiest way for folks to answer. The series of questions are listed below.  If you like, you can post your responses as a comment to this post.  I might create a Google Doc to make it even easier for people to provide input. If you have any ideas on how to share this, please let me know. And feel free to share with other patients or advocates who may want to provide input.  Many thanks!

Questions:

How do you define “living well” with cancer or after cancer treatment?

What personal/life activities, events or accomplishments do you consider when you think of a cancer survivor living well DURING cancer treatment?

What personal/life activities, events or accomplishments do you consider when you think of a cancer survivor living well AFTER cancer treatment?

What are the most important impacts on your quality of life from your cancer or cancer treatment? Did/does your care team help you address these challenges?

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