The primary focus of most doctors treating cancer patients is on producing a good clinical outcome, such as tumor shrinkage or complete surgical resection. As important as these measures are, however, they are not necessarily the ones that are most important to cancer patients. These "end-users" of cancer care are often more concerned with the things that make life worth living - whether they'll see their children grow up, whether they'll be able to keep working and supporting their families, or whether they'll be able to maintain a good or acceptable quality of life.

Many measures of a good or acceptable quality of life for cancer patients are universal, for example, adequate pain relief or freedom from nausea. Conceptually, however, quality of life encompasses more than just the physical aspects of well being to include the cognitive, spiritual, emotional, and social aspects of life as well. Consequently, a "good" quality of life as defined by a cancer patient in central Africa may be very different from that defined by a cancer patient in the suburbs of an American city.

In addition to NCI's goal of eliminating deaths due to cancer, the Institute is equally dedicated to eliminating the suffering caused by the disease. Therefore, NCI supports and participates in research aimed at defining and improving quality of life for cancer patients, cancer survivors, and their families throughout the world. A few examples of this work can be found on the following pages.

Developing valid, reliable, sensitive, and feasible clinical and patient-centered endpoint measures for use in quality of cancer care studies
In 2001, NCI created the Cancer Outcomes Measurement Working Group (COMWG) to evaluate existing endpoint measures and instruments and to formulate alternative strategies for identifying valid, reliable, sensitive, and feasible clinical and patient-centered endpoint measures for use in quality of cancer care studies. The endpoint measures being studied include health-related quality of life, patient satisfaction, and economic burden. The COMWG is designed to help NCI and others involved in quality of cancer care research to identify the relative strengths and weaknesses of various approaches to assessing these endpoints. COMWG participants include researchers from the United States, Canada, and The Netherlands.

NCI has also collaborated with the International Society for Quality of Life Research (ISOQOL) to define quality-of-life outcome measures for people and societies around the globe. ISOQOL is the leading organization devoted to fostering health outcomes research and developing clinical applications to improve quality of life. NCI has participated in and presented research at ISOQOL's annual meetings.

At the 2001 meeting in Amsterdam, The Netherlands, NCI researchers presented the preliminary findings from the COMWG. The following year, NCI led a 2-hour panel discussion to showcase the major findings and recommendations from the COMWG. In addition, NCI staff helped lead a workshop on the applications of modern measurement theory to cancer outcomes assessment and, in another workshop, discussed the application of health-related, quality-of-life measures in clinical trials conducted by the National Cancer Institute of Canada. More recently, NCI cosponsored and provided financial support for the 2005 ISOQOL annual meeting in San Francisco, and NCI investigators presented research at the conference.

Two Presidential reports on cancer survivorship issues in the United States and Europe
In the world's industrialized societies, many people with cancer will survive their disease. More than 25 million people throughout the world are cancer survivors and that number grows daily. Cancer survivors have unique health needs and other concerns that must be assessed and addressed throughout the remainder of their lives.

Assessing the state of cancer survivorship is an ongoing focus of NCI research. As part of that research, NCI participated in a series of hearings held by the President's Cancer Panel on cancer survivorship in the United States and Europe. At the Panel's first hearing in the series, which was held in Lisbon, Portugal in May 2003, the key objective was to learn about health services and survivorship activities in diverse European national health systems that might be adapted for survivors in the United States. Additional hearings were held in Denver, Colorado, Austin, Texas, Birmingham, Alabama, and Philadelphia, Pennsylvania to address pediatric cancer survivorship, adolescent and young adult survivorship, adult cancer survivorship, and older adult cancer survivorship.

The reports that resulted from this series of hearings are Living Beyond Cancer: Finding a New Balance and a companion volume, Living Beyond Cancer: A European Dialogue. They present the Panel's findings on survivorship in the United States and Europe and recommend action steps to alleviate the challenges faced by cancer survivors and their families.

The reports address issues such as screening for disease recurrence and the development of second cancers and the need for ongoing medical care to deal with the lasting effects of some treatments, such as chronic fatigue, sexual dysfunction, or persistent pain. Survivors must also deal with the effects that their illness may have on their employment, their families, or their ability to fully function physically, emotionally, and socially.

Both Panel reports are available on the NCI Web site at http://deainfo.nci.nih.gov/advisory/pcp/pcp03-04rpt/Survivorship.pdf.

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