Our Research Helps Survivors Now

Recognizing the growing number of cancer survivors in the United States, the LIVESTRONG Foundation launched the LIVESTRONG Survey for Post-Treatment Cancer Survivors in 2006 and 2010 focusing on the physical, emotional and practical needs of cancer survivors after treatment. In 2012, we decided to focus the LIVESTRONG Survey on the practical concerns that cancer survivors face. We developed the survey in coordination with the National Cancer Institute, the Office of Behavioral and Social Sciences Research, the Centers for Disease Control and Prevention, American Cancer Society and the Agency for Healthcare Research and Quality. Our goal was to include elements of the Experiences with Cancer Survivorship supplement of the Medical Expenditures Panel Survey (MEPS).

In total, 6,383 survivors completed the survey and provided information about their practical concerns related to work, school, debt, insurance and fertility preservation.

The Foundation has released a series of four briefs on the results of the 2012 survey.

Survivors’ Experiences with Survivorship Care Plans

Of the 6,383 survivors who completed the 2012 LIVESTRONG Survey, 5,313 had completed treatment and provided insight into survivorship care plans. Overall, we found that:

  • Only 17% of survivors indicated that they had received a care plan.
  • The more recently survivors had completed treatment, the more likely they were to have received a care plan.
  • Care plans helped to strengthen patient-provider communications.

Read the Survivors’ Experience with Survivorship Care Plans brief now.

Survivors’ Experiences with Fertility

Of the 6,383 survivors who completed the 2012 LIVESTRONG Survey, 1,333 identified themselves as adolescent or young adult cancer survivors, and provided insight into their experiences with cancer and fertility. Overall, the results revealed that:

  • 12% of males and 15% of females did not receive any information about risks to their fertility due to treatment.
  • Fertility preservation is significantly more expensive for women than for men, with 32% of women paying $10,000 or more for the services compared to 3% of men.
  • Of the 18% who tried to conceive after treatment, the majority were successful.

To learn more, read the Survivors’ Experiences with Fertility brief.

Survivors’ Experiences with Employment

80% of survivors who took the 2012 survey worked for pay after their diagnosis. Overall the results relating to survivors’ experiences with employment revealed that:

  • 72% of survivors who had worked after their diagnosis reported being less productive at work.
  • 55% of survivors worried that they would be forced to retire or quit before they were ready.
  • 65% of survivors switched from a full- to part-time employment status while they were in treatment.

To learn more, read the Survivors’ Experiences with Employment brief.

Survivors’ Experiences with Finances and Insurance

Cancer can take a significant financial toll on survivors and their families. The results of the 2012 LIVESTRONG Survey revealed that:

  • 30% of survivors reported that they or their family members had to borrow money or go into debt because of their cancer, its treatment and lasting effects.
  • 71% of survivors reported that they had to pay out of pocket for medications and/or medical equipment and supplies.
  • 10% of survivors who applied for insurance were denied because of their diagnosis. Out of those who were insured, 17% were refused coverage for doctors’ visits with a provider or facility of their choice.

To learn more, read the Survivors’ Experiences with Finances and Insurance brief.