Research Library

Our research and findings are a large and vital component of the work we do. Below you will discover how our research impacts our programs and services that we offer to cancer survivors and their loved ones.

Cancer Stigma and Silence Around the World

This report is the result of a global research study executed by LIVESTRONG in 2007 and focuses on the challenges and opportunities presented by the stigma of cancer around the world. LIVESTRONG plans to use the results of this research to strengthen patient advocacy in international settings and to build a global grassroots movement.

The Essential Elements of Survivorship Care: Definitions and Recommendations

Acting upon recommendations made at the Essential Elements of Survivorship Care Meeting in September 2011, the LIVESTRONG Foundation and the LIVESTRONG Survivorship Center of Excellence Network have spent the last year refining the definitions of the 20 Essential Elements. The refined definitions include specific recommendations and examples of basic and enriched levels of survivorship care and should provide a concrete roadmap for stakeholders toward the implementation of the Essential Elements in real world practice.

Position Statement: Health Insurance Coverage for Iatrogenic Infertility

As national conversation for health insurance coverage for fertility preservation developed, LIVESTRONG and the Cancer Legal Resource Center joined together to develop a position statement outlining standards for health insurance coverage to address the crisis of iatrogenic infertility at the time of a cancer diagnosis.

Challenges Reported By Post-Treatment Cancer Survivors in the LIVESTRONG Surveys

In June 2010, LIVESTRONG launched a new and improved version of the 2006 survey which one again focused on the physical, emotional and practical needs of post-treatment survivors. This report describes the post-treatment needs of this new group of survivors and analyzes how their needs compare to the survivors surveyed in 2006, highlighting the gap between who reports post-treatment needs and who receives care for those needs as a critical breakdown in post-treatment survivorship. 

The Global Burden of Cancer - Challenges and Opportunities

Cancer is a global health challenge with an associated global economic burden. This report estimates the total economic liability of new cancer cases and allows us to put real dollars ($305 billion a year) to the pain and suffering that we already know exists. It presents the results of research and analysis of global expenditures for cancer control and provides detail by country, income group, and geographic region.

Texas Takes on Cancer: The Cancer Prevention and Research Institute, A Case Study of Proposition 15

In 2007, Texas voters approved Proposition 15, landmark legislation that dedicated $3 billion over ten years towards the fight against cancer. This $3 billion investment allows for cutting edge cancer research to be conducted in Texas laboratories and ensures that proven discoveries are delivered to all segments of the population in local communities across the state. This historic legislation was successful due to the hard work of a broad coalition united in the fight against cancer.

Delivering Hope - Cancer Care in the Developing World

This brief includes case studies from Rwanda and Jordan describing how existing health systems designed to treat infectious diseases in low-income countries can be strengthened to address the urgent and growing cancer needs of developing populations. Recommendations included in the brief focus on interventions that will be the most effective and have the biggest impact on quality of life and survival.

The Promise of Electronic Health Information Exchange

Based on a survey of cancer survivors, this report details how survivors want to use, access and interact with their health information as well as how survivors feel medical care will change with the adoption of electronic health information exchange.

The Global Cancer Stigma Index

The Global Cancer Stigma Index was developed by LIVESTRONG and the RAND Corporation during 2011 - 2013 to empower policymakers, researchers, and NGOs to assess levels of cancer stigma within a population and inform their planning efforts to address it. The index can identify key areas in which a population could benefit from education to change perceptions about cancer and address misinformation. The index can also be used cross-culturally to rank countries based on their level of cancer stigma.

2012 LIVESTRONG Survey: Survivors Experience with Financial Concerns

In 2012, we decided to focus the LIVESTRONG Survey on the practical concerns that cancer survivors face. A total of 6,383 survivors completed the survey and provided information about their practical concerns related to work, school, debt, insurance and fertility preservation. The Foundation shared the results of the survey through four briefs published in 2013.

2015 LIVESTRONG Survey: Treatment Summaries and Survivorship Care Plans

The results from our 2015 treatment summaries and survivorship care plans survey show that the majority of survivors did not receive survivorship care plans. However, of the people who did receive survivorship care plans, 75% found them useful.
 

Patient-Centered Cancer Care: Opportunities for Innovation

In June of 2014, LIVESTRONG held an unprecedented gathering of over 80 stakeholders in Austin, Texas. The task: share their insight and expertise on designing a new approach to treating cancer – Patient Centered Cancer Care (PCCC).

2012 LIVESTRONG Survey: Survivors Experience with Work

In 2012, we decided to focus the LIVESTRONG Survey on the practical concerns that cancer survivors face. A total of 6,383 survivors completed the survey and provided information about their practical concerns related to work, school, debt, insurance and fertility preservation. The Foundation shared the results of the survey through four briefs published in 2013.

2014 LIVESTRONG Survey: Searching for Information

In our 2014 Searching for Information Survey, we found that cancer survivors searched the most for information on treatment options, cancer diagnosis, late effects, emotional well-being and nutrition and exercise. The majority of survivors, 87%, found the information trustworthy, but 41% found it confusing.

2012 LIVESTRONG Survey: Survivors Experience with Survivorship Care Plans

In 2012, we decided to focus the LIVESTRONG Survey on the practical concerns that cancer survivors face. A total of 6,383 survivors completed the survey and provided information about their practical concerns related to work, school, debt, insurance and fertility preservation. The Foundation shared the results of the survey through four briefs published in 2013.

2012 LIVESTRONG Survey: Survivors Experience with Fertility

In 2012, we decided to focus the LIVESTRONG Survey on the practical concerns that cancer survivors face. A total of 6,383 survivors completed the survey and provided information about their practical concerns related to work, school, debt, insurance and fertility preservation. The Foundation shared the results of the survey through four briefs published in 2013.

National Action Plan for Cancer Survivorship Overview

In 2004, the Centers for Disease Control and Prevention (CDC) and LIVESTRONG joined forces to lead a public health effort to address the issues faced by the growing number of cancer survivors living with, through, and beyond cancer. Through their collaboration A National Action Plan for Cancer Survivorship: Advancing Public Health Strategies was developed.

2015 LIVESTRONG Survey: Financial Concerns

The results from our 2015 financial concerns survey show that the majority of survivors experienced financial problems, and did not get help with resolving them.

Lessons Learned from the LIVESTRONG Survivorship Center of Excellence Network: A LIVESTRONG Report

The LIVESTRONG Survivorship Center of Excellence Network (Network) was established in 2005 to advance survivorship care and improve the health and quality of life of post-treatment cancer survivors. This report summarizes the contributions of the Network to date, offering insight from a qualitative deductive study conducted on the Network and suggesting next steps for accomplishing the Network’s goals.

National Action Plan for Cancer Survivorship Full Report

In 2004, the Centers for Disease Control and Prevention (CDC) and LIVESTRONG joined forces to lead a public health effort to address the issues faced by the growing number of cancer survivors living with, through, and beyond cancer. Through their collaboration A National Action Plan for Cancer Survivorship: Advancing Public Health Strategies was developed. This is the complete report.

2010 LIVESTRONG Survey: Post-treatment needs of Survivors

In June 2010, LIVESTRONG launched a new and improved version of the 2006 survey which once again focused on the physical, emotional and practical needs of post-treatment survivors. This report describes the post-treatment needs of this new group of survivors and analyzes how their needs compare to the survivors surveyed in 2006, highlighting the gap between who reports post-treatment needs and who receives care for those needs as a critical breakdown in post-treatment survivorship.

A National Action Plan for Cancer Survivorship: African American Priorities

A National Action Plan for Cancer Survivorship: African American Priorities is an addendum to the joint 2004 CDC and LIVESTRONG report, National Action Plan for Cancer Survivorship: Advancing Public Health Strategies, and prioritizes the cancer survivorship needs of the African American community to ultimately lead to improved quality of life and survival rates for survivors.

Supporting the Fight Against Cancer: A LIVESTRONG Brief

This report was the result of data gathered from 2,307 cancer survivors who voluntarily participated in the LIVESTRONG Survey for Post-Treatment Cancer Survivors initially launched in 2006. This report details the physical, emotional and practical of cancer survivors needs as outlined by cancer survivors themselves, providing a road map for future funding, research and advocacy.

A National Action Plan for Cancer Survivorship: Native American Priorities

A National Action Plan for Cancer Survivorship: Native American Priorities is an addendum to the joint 2004 CDC and LIVESTRONG report, National Action Plan for Cancer Survivorship: Advancing Public Health Strategies, and prioritizes the cancer survivorship needs of the Native American community to ultimately lead to improved quality of life and survival rates for survivors.

The Cancer Prevention and Research Institute, A Case Study of Proposition 15

In 2007, Texas voters approved Proposition 15, landmark legislation that dedicated $3 billion over ten years towards the fight against cancer. This $3 billion investment allows for cutting edge cancer research to be conducted in Texas laboratories and ensures that proven discoveries are delivered to all segments of the population in local communities across the state. This historic legislation was successful due to the hard work of a broad coalition united in the fight against cancer.

Closing the Gap: Research and Care Imperatives for Adolescents and Young Adults with Cancer

The National Cancer Institute (NCI), in collaboration with the LIVESTRONG Young Adult Alliance, established the Adolescent and Young Adult Oncology (AYAO) Progress Review Group (PRG). This was the first public-private partnership of its kind, and was composed of prominent members of the scientific, medical and advocacy communities. Its purpose is to develop a national agenda for adolescent/young adult oncology.

A World Without Cancer: Global Cancer Summit Report

During August 24–26, 2009, an unprecedented gathering of 500 delegates representing more than 65 countries occurred in Dublin, Ireland, at the LIVESTRONG Global Cancer Summit. This report outlines the events of those three days and highlights opportunities and strategies that were identified during the summit that collectively provide a unified multinational roadmap to making cancer a global priority.

The Essential Elements of Survivorship Care: A LIVESTRONG Brief

The LIVESTRONG Foundation convened the Essential Elements of Survivorship Care Meeting in Washington, D.C., in September 2011 with the goal of making progress in building consensus in the survivorship community around how to best address the needs of post-treatment survivors. Over 150 leaders, stakeholders, experts, cancer survivors and cancer survivor advocates achieved consensus on these 20 essential elements of survivorship care delivery. This brief provides both an overview and the outcome of the meeting, including the 20 essential elements of survivorship care.

Iatrogenic Infertility Due to Cancer Treatments: A Case for Fertility Preservation Coverage

LIVESTRONG’s goal is to amend current cancer benefits to include coverage for all standard fertility preservation treatments when necessary medical treatments may cause iatrogenic infertility. Both the emotion-laden fairness case and positive return economics provide a strong basis for coverage consideration. This easy to implement benefit modification will remedy iatrogenic infertility as well as improve outcomes, reduce distress, enable better treatment decision-making, and increase corporate goodwill.