Measuring what really matters: Advocacy-led co-creation and accrual of a pan-cancer QoL survey.

Abstract

240 Background: Implementing co-creation methods in research may provide vital input to improve accrual, retention, and research value. Advocates for Collaborative Education (ACE), a global coalition of patient, community, research, and policy advocates, used co-creation methodology with patients, survivors, and metavivors to Design, Develop , and Deploy a survey to define and quantify QoL impacts across a large sample of individuals with a diagnosis or history of cancer. Methods: With a defined primary objective to “gain insight into challenges faced by individuals with a history or diagnosis of cancer and how these challenges impact their life and quality of life,” a co-creation team of individuals with lived experience in early stage or metastatic cancers was established. In the Design phase, co-creation team members were interviewed and engaged in discussions on side effect measurement and impact. They were asked a variety of questions, including what side effects they believed were most impactful to QoL, what elements they felt were missing in conversations around QoL, and how accurately they felt QoL was measured in the clinical setting. In the Develop phase, survey questions were developed and vetted with the co-creation team. In the Deploy phase, co-creation team members, advocate members of the ACE community, and aligned advocacy groups, were key to recruiting a broad audience via electronic distribution and social media platforms. Results: Efforts resulted in the co-creation of a six-section, 93 question, IRB-exempt survey. 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. In five weeks, the survey accrued over 500 responses across a variety of cancer types (15+), stages (0 - IV), ages, statuses, and racial groups. Conclusions: Co-creation methods were used in Design to identify side effect experiences in cancer treatment and validate what matters most to individuals with cancer; in Develop to validate a pan-cancer survey examining what mattered to the audience of interest; and in Deploy to rapidly accrue a large and diverse set of responses through advocacy partnerships. Co-creation also identified layers of side effect management challenges that cannot be reflected in current rubrics for QoL measurement. While co-creation may seem daunting, this study provides a template for effective, quality partnerships between study teams, advocates, and advocacy groups for implementing co-creation methods in the cancer setting.