More Than a Diagnosis: Quality of Life Survey for Individuals with a Diagnosis or History of Cancer (MTAD) was a response to the patient community’s frustration with current quality-of-life (QoL) measurement tools. Existing tools to do not adequately measure what people with lived experience feel contributes to or detracts from their QoL.
The six-section, 93-question, IRB-exempt survey was co-created by ACE members to better reflect actual patient careabouts in the hopes results could help to guide more relevant supportive care therapies. The co-creation team identified 17 treatment-related side effects that were incorporated into the survey. Survey questions asked respondents about perceived severity of side effects, how well informed they felt about possibilities of experiencing these side effects, access to supportive care, side effects of supportive care therapies, and personal preferences for receiving cancer-related information. A unique measurement scale was shaped by the co-creation team to be more reflective of side effect impact on QoL.
Breast cohort data has been shared at the San Antonio Breast Cancer Symposium (SABCS), aspects of data from the full cohort has been shared at the American Society of Clinical Oncology (ASCO) annual meeting and at the Multinational Association for Supportive Care in Cancer (MASCC), and co-creation methodology data has been shared at ASCO Quality. Publications are in the works as well as an expansion of the survey.
More Than a Diagnosis: An Untold Story of Quality of Life
Examined breast cancer cohort from the MTAD study. Presented at SABCS 2023
Measuring What Really Matters: Advocacy-Led Co-Creation and Accrual of a Pan-Cancer QoL Survey
Reviewed co-creation methods used in the design and recruitment of “More Than a Diagnosis: A Quality of Life Survey for Individuals with a Diagnosis or History of Cancer.” Presented at ASCO Quality Symposium 2024
Seeing the Person Through the Forest Plot: A Co-Created Quality-of-Life Survey
Examined responses from pan-cancer community (n=515) on impacts of side effects to perceived quality-of-life. Identified key gaps in supportive care from a patient perspective. Presented at MASCC 2025
MTAD progress
This survey is now closed.
THANK YOU to those of you who shared your experiences and we will share findings here in the coming weeks and months.
We would not have these results without the participation of over 500 patients. In order to maintain anonymity necessary for IRB exemption, but to respect the valuable time of respondents, compensation was offered in an indirect manner. Individuals, upon completion of the 15-20 minute survey were invited to choose from a list of 501c3s (all members of the Advocate Collaborative) as the beneficiary of financial compensation for their time. A special Thank You to Napo Pharmaceuticals for providing this financial compensation to beneficiaries.
If you are interested in collaborating on a publication in this space, or if you have any questions about this survey or our QoL research efforts, please contact us at admin@avocatecollaborative.org.
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Your feedback is valuable in helping us understand the challenges of dealing with cancer and cancer treatment and how those realities affect your quality-of-life. To learn more and to access the survey, please click on this link which will open the survey in a new tab.
IRB ID: 2023-0256
If you have any questions about this survey or our QoL research efforts, please contact us at admin@avocatecollaborative.org.