The National Coalition for Cancer Survivorship (NCCS) conducts an annual State of Survivorship Survey to delve into the cancer survivor journey. This survey is conducted to learn of the lived experiences of survivorship of cancer survivors. The survey is needed to identify health disparities, gaps in quality care and assessment of the health care landscape that needs policy change at the national level. The survey objective is to better understand the differences in cancer survivor attitudes, experiences, and needs at every stage of the cancer journey. The survey will identify who the under-served audiences in the cancer community are, what are their specific challenges, and how the system can better meet their needs.
Phase one was fifteen virtual interviews for approximately 60 minutes-each were conducted. The focus was on a few audiences: young adults; Hispanic adults; men. Phase two was a nationwide survey of adult cancer patients and survivors 18. Quotas was set to make sure the sample was representative by age, gender, race/ethnicity, and region of data from NCI. Surveys were recruited through an online non-probability sample with quotas set to ensure demographically representative audiences. Phase three was a survey invitation to all NCCS email contacts, patient advocacy organizations, followers on social media to take the survey.
This survey presents survivor experiences at each stage of cancer survivor journey: screening and diagnosis, treatment and care, and post-treatment care. The survey explored the financial, physical, and emotional costs that cancer can have for those who receive a cancer diagnosis. Significant disparities exist in the experience of cancer care, with a disproportionate effect among specific populations, including people of color, young adults, women, and individuals with metastatic cancer.
The survey is sharing the lived experience of quality care today. It directs patient cancer advocacy organizations to advocate for change in how the nation does research, regulates, finances, and delivers quality cancer care. The information shared will empower other cancer survivors and patient advocates through publications, and tools for self-advocacy. This survey brings awareness and connects advocates and cancer organizations together to address nationwide public policy issues affecting cancer survivors.