Oral Presentation FCIC Survivorship Conference 2013

Survivors informing survivorship care (#25)

Devon McGoldrick 1 , Stephanie Nutt 1 , Ellen Beckjord 2 , Ruth Rechis 1
  1. LIVESTRONG Foundation, Austin, TX, USA
  2. RAND Corporation, Pittsburgh, PA, USA

There are nearly 12 million cancer survivors in the United States, making late effects caused by cancer and its treatment a public health priority.  In 2010, the LIVESTRONG Foundation fielded its second LIVESTRONG Survey. The 2010 survey instrument included items from existing scales and asked about physical, emotional, and practical concerns encountered by cancer survivors after the end of cancer treatment.  More than 15,000 individuals affected by cancer responded to the survey.  The results presented here include findings for 3,129 post-treatment cancer survivors (PTCS) who completed a minimum of 75% of the items reflecting post-treatment concerns. Overall, the vast majority of PTCS experienced physical, emotional and/or practical concerns as a result of having cancer. However, in many cases, they did not receive care for those needs. When asked why respondents had not received care, the majority reported that it was because they learned to live with the concern.  Opportunities to address the results found here include connecting people to the resources they need and using these experience-driven results to inform the identification and dissemination of the essential elements of survivorship care delivery.  Data from this large-scale survey enables the voice of people affected by cancer to play a role in guiding programs and policies to meet the needs of this large and growing population.