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Abstract Background Advocates for Collaborative Education, a global coalition of patient, community, research, and policy advocates, initiated an anonymous, online survey to assess Quality of Life (QoL) impacts of cancer diagnosis and treatment to inform research, clinical care, and the broader cancer community. Identifying what matters most to individuals can potentially guide improvements in supportive care to effectively address QoL impacts. Methods A six-section, 93 question survey was co-created by patients, survivors, and advocates. Co-creation was instrumental in determining categories, specific questions, and measurement scales used to assess severity and impact of QoL challenges. Beyond demographic, treatment, and cancer diagnosis data, co-creation participants identified seventeen (17) treatment-related side effects. Survey questions asked about these side effects, their perceived severity, how well informed they felt about possibilities of experiencing these side effects, supportive care access, side effects of supportive care therapies, and personal preferences for receiving cancer-related information. Recruitment efforts for this online survey were conducted through advocacy groups and social media platforms. Results Across a wide range of demographic subsets, including age, race, stage of cancer, and treatment modalities, 334 respondents with a history of breast cancer reported a decline in QoL scores pre cancer vs post cancer according to the co-created measurement tool. Physical and emotional well-being emerged as top priorities for most respondents, 47.9% and 27.5% respectively. Of 17 listed side effects, respondents cited fatigue (49%), muscle/joint pain (36%), and emotional distress (35%) as primary concerns, with sexual dysfunction and cognitive impairment ranking prominently. Forty-six percent reported severe (frequent 2023 Dec 5-9; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2024;84(9 Suppl):Abstract nr PO3-28-01.
Tinianov et al. (2024) studied this question.
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