For several months now, I’ve been sharing information with you about the Metastatic Breast Cancer Collateral Damage Project, our comprehensive new initiative aimed at capturing and quantifying all the truly life-altering impacts of metastatic breast cancer (MBC) and its treatment – and ultimately developing a set of concrete recommendations to improve quality of life for people living with MBC. With so much potential to help people, this project is a high priority for Dr. Susan Love Foundation for Breast Cancer Research.
So far, we’ve assembled a diverse Advocate Task Force to advise us, gathered telling information from more than 350 MBC patients, crafted a detailed Health of Women (HOW) Study™ questionnaire, and now – if you have MBC – it’s time for you to do your part to help make life better for all MBC patients by completing the questionnaire.
What makes this questionnaire – this whole project, in fact – different from all the others out there that have also sought to collect data on quality-of-life issues endured by MBC patients?
This questionnaire takes a fresh approach. It’s based on input from our Advocate Task Force, all of whom have MBC, and on the real-life experiences of the people who answered our earlier survey (as well as data from our original Collateral Damage Project). So the questions focus on the real concerns that real people have, in their own words, not just on what researchers think patient issues are.
From the data we receive, we’ll be able to scientifically measure the full impact of MBC on quality of life. In the fall, we’re convening a Think Tank of a group of provider-survivors (healthcare providers with a history of cancer themselves), along with the members of our Advocate Task Force, to begin the process of developing specific recommendations to guide the breast cancer community in dealing with the collateral damage of MBC and its treatment. From there, we’ll spend time refining the recommendations and will get them out into the community in the form of publications and accessible materials.
We need thousands of people to take part in the questionnaire. We’ve asked nearly 100 other breast advocacy and cancer organizations to spread the word to their members. But we most assuredly need you, too, if you have MBC. If you’re already registered as a HOW member, log in and go! If you’re not yet a member, register for the HOW Study and get started.
All MBC patients need – and deserve – a better quality of life. Complete the questionnaire today to help us make that happen.
Warm regards (and a little push),