National Coalition for Cancer Survivorship State of Survivorship Survey.

Abstract

e18684 Background: The National Coalition for Cancer Survivorship (NCCS) conducts an annual State of Survivorship Survey to delve into the cancer survivor journey. 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 identifies who the under-served audiences in the cancer community are, what are their specific challenges, and how the system can better meet their needs. Methods: Phase one was 15 virtual interviews of young adults; Hispanic adults; men. Phase two was a nationwide survey of 2,078 patients and survivors. 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. The NCCS connected group was 670 patients and survivors. Results: We segmented the patients into experiential categories: those who have had positive experiences during their journey, mixed, and negative. Nearly three-quarters of respondents reported they were very satisfied with their treatment and care, due to a high degree of trust in and the relationship with their health care team. However, large disparities exist for those in the Negative Experience group. 68% of respondents overall said they always felt their health care provider listened to and respected their concerns, while only 47% of Hispanic respondents and 47% of individuals with metastatic cancer agreed. Similarly, 68% overall said they could always talk to their health care provider about their concerns, while 46% of Hispanic respondents and 50% of individuals with metastatic cancer agreed. Further, levels of trust were high, but groups with lower levels of trust included young adults, Blacks, Hispanics, people living with metastatic cancer. The Negative Experience group gave providers lower satisfaction scores and used terms like “bullied,” “ignored,” “test subject,” and “rushed” to describe their care. While majorities of patients said their health care team was a critical support network during treatment, followed by family/friends and faith, the Negative Experience and Mixed Experience audiences were significantly less likely to report support in any areas of their life during treatment. Conclusions: The survey is sharing the lived experience of cancer care today and brings to light the health disparities. The results show that part of this disconnect is demographic — people of color, younger, and lower socioeconomic status patients are more likely to be in the Mixed and Negative Experience segments. And part of it is experiential — these patients struggle through the their treatment and care.