CHALLENGES REPORTED BY
POST-TREATMENT CANCER
SURVIVORS IN THE
LIVESTRONG SURVEYS

Recognizing the growing number of cancer survivors in the United States, LIVESTRONG launched the LIVESTRONG Survey for Post-Treatment Cancer Survivors in 2006. Cancer survivor respondents in that survey experienced significant concerns, which for many were not addressed. To further understand post-treatment cancer survivorship and examine trends over time, LIVESTRONG launched a similar survey in 2010. This report reviews the results from the post-treatment cancer survivors in the 2010 LIVESTRONG Survey and compares them with the 2006 LIVESTRONG Survey for Post-Treatment Cancer Survivors.

Cancer survivors who responded to these surveys experienced a variety of physical, emotional and practical concerns. While respondents had varied experiences in terms of type of cancer, type of treatment, time since treatment ended and a number of other characteristics, for these survivors, life after a cancer diagnosis continued to bring changes and challenges. An overwhelming number of cancer survivors (98 percent) experienced continued physical, emotional and practical concerns. Yet many did not receive help for their needs. While more than half of 2010 survey respondents who had experienced at least one physical concern did receive care (58 percent), only half of those who experienced emotional concerns received help (50 percent) and only 20 percent of those with practical concerns received help. Alarmingly, the receipt of care for physical, emotional or practical concerns decreased between 2006 and 2010.

The results from this survey are derived from 3,129 cancer survivors in the 2010 iteration and 2,307 cancer survivors in the 2006 iteration who voluntarily participated, primarily online. The majority of respondents were Caucasian/white, female, under the age of 55, insured and employed. While the results of this survey may not represent the experiences of all post-treatment cancer survivors due to its voluntary nature, the findings make an important contribution to the scientific understanding of the needs of this group.

After analyzing this information, we believe more should be done to address the needs of cancer survivors. These results highlight the gap between who reports concerns and who receives care for those concerns as a critical breakdown in post-treatment survivorship. This breakdown needs to be addressed.

We have identified three key steps that we believe can help to address the gaps between what cancer survivors are experiencing and what we are able to provide. We must…

• Connect people to the resources they need.
  When care exists for—and helps to ameliorate—post-treatment survivors’ concerns, connecting more survivors to this care is an actionable means to improve post-treatment cancer survivorship.
   
• Identify and disseminate the essential elements of survivorship care delivery that can help to ensure cancer survivors’ needs are met.
  To address the multifaceted experience of surviving cancer, we need systems of care that incorporate a variety of disciplines which are positioned to address the physical, emotional and practical concerns of post-treatment survivors. The cancer community should identify the minimal requirements for survivorship care that address the most common physical, emotional and practical concerns experienced by survivors and leverage resources, such as Health IT platforms, to coordinate good care.
   
• Conduct continued surveillance of the concerns of cancer survivors and disseminate research to better understand the experience of post-treatment survivorship.
  Surveillance at the national and local levels should occur on a regular basis to measure the needs of and receipt of care by cancer survivors, including survivors in the post-treatment period. Continued research and attention to this unique piece of the cancer continuum—life after treatment—is vital as the number of survivors increases steadily.

 

Read “I Learned to Live with It” Is Not Good Enough: Challenges Reported by Post-Treatment Cancer Survivors in the LIVESTRONG Surveys: A LIVESTRONG Report, 2010