By Christine Benjamin
People living with breast cancer – especially those with metastatic disease – need and deserve a better quality of life (QOL). Recognizing that, Dr. Susan Love Research Foundation established the Metastatic Breast Cancer Collateral Damage Project to make a significant difference for these women and men by:
- Capturing and quantifying all the life-altering impacts – the collateral damage – of metastatic breast cancer and its treatment, using a Health of Women (HOW) Study™ questionnaire to document them
- Developing concrete recommendations to improve quality of life
There's no arguing that this is an important initiative for our community. Let me tell you more about the project to convince you to participate – if you have metastatic breast cancer!
The Story Behind the Metastatic Breast Cancer Collateral Damage Project
This project has its roots in an earlier Foundation Collateral Damage Project that included extensive crowdsourcing and a HOW QOL questionnaire. HOW is an international online study to track significant numbers of women and men, with and without a history of breast cancer, over time, using a series of questionnaires to delve deeply into the breast cancer conundrum. The HOW QOL questionnaire was completed by nearly 12,000 women and men, both with and without breast cancer. Their answers revealed – not surprisingly – that metastatic breast cancer patients have a significantly diminished quality of life, compared not only to healthy people but also to people who have had a primary breast cancer diagnosis and treatment.
As a result of those findings, Dr. Susan Love Research Foundation decided to focus next on metastatic patients, and to do it by taking a fresh approach that would concentrate more on the issues that really matter to patients than on what researchers may think is important. The Foundation engaged a highly diverse Advocate Task Force, composed of 10 women and men with metastatic disease themselves, to guide the effort and provide their insights at every step of the way. And the organization conducted a five-question survey that asked metastatic patients to convey, in their own words, everything that has impacted their ability to live their lives the way they want.
Telling Survey Results
More than 350 people responded to that survey, and they said that collectively, they suffer collateral damage in every aspect of their lives – physical, functional, psychological, emotional, social, vocational, and financial. They also said that other people, even healthcare providers, don't really understand metastatic breast cancer and the havoc it creates. The Foundation used their responses, as well as data from the previous quality of life questionnaire, to create a new HOW questionnaire for the Metastatic Breast Cancer Collateral Damage Project.
Using the findings from that questionnaire, and the counsel of both a group of provider-survivors (oncology healthcare providers who have themselves been treated for cancer) and the Advocate Task Force, Dr. Susan Love Research Foundation will develop a set of specific recommendations aimed at improving quality of life for metastatic breast cancer patients and will communicate those recommendations broadly.
Our community needs thousands of people to participate in the Metastatic Breast Cancer Collateral Damage Project HOW questionnaire. If you have metastatic breast cancer, click here to set up a new HOW account or log in to an existing HOW account and complete the questionnaire. For questions or more information, contact Dr. Susan Love Research Foundation at email@example.com.
Thank you for helping to make life better for the metastatic breast cancer community!
Christine is the Breast Cancer Program Director at SHARE.