The Importance of Participating in Cancer Outcomes and Epidemiological Research

The importance of participating in cancer outcomes and epidemiological research

When it comes to improving cancer outcomes for patients and their loved ones, research is key.  Especially research done properly: conducted ethically by experts, improved with input and feedback from patients and healthcare providers, and using good science.

Cancer epidemiological research helps uncover risk factors that are associated with different tumor types. Cancer outcomes research essentially includes research on quality of life and other psychosocial issues that come up for patients, cancer relapse and recurrence, and ultimately cancer survival. All of these kinds of research are important to improve the lives of cancer patients and their loved ones, and research is built upon patient participation.

Not all cancer epidemiological and outcomes research requires patient contact; much research is conducted on cancer registry data, such as that collected by the National Cancer Institute’s (NCI) Surveillance Epidemiology and End Results program.  The Central Brain Tumor Registry is used for malignant and nonmalignant brain tumors. (http://www.cbtrus.org/)  Only by patients communicating about their experiences, however, whether in an open-ended format, such as in focus groups or interviews, or by answering questions in a survey, can researchers gain an understanding about the experiences people undergo after being diagnosed with cancer. One great reason to participate in research is that patients get the opportunity to communicate their perspectives to researchers, often revealing insights that otherwise might be missed. Something to be aware of: although the millions of Americans do participate in research projects, general willingness to participate in clinical research studies may be declining: a study JAMA reported a drop in likely participation rates from 63% in 2001 to 55% in 2005

A previous article “Why Should We Participate in Clinical Trials?” mentioned the importance of patient participation in clinical trials.  For the same reasons given, including: helping yourself, helping others, access to quality care, and advancing medical science, participation in cancer outcomes research is also vitally important. Doctors and other healthcare providers are deeply committed to not only prolonging life after cancer, but also improving quality of life. Research helps providers determine what factors contribute to patient success. Here are a variety of findings that have come out of cancer outcomes research, all made possible by the generous participation of cancer patients and survivors:

1. Quality of life (QOL)^*: A study published in Cancer in 2008 comparing quality of life in newly diagnosed initial and recurrent breast cancer found that although recurrent patients exhibited more physical symptoms they reported better coping and higher psychological quality of life than initial patients.

2. Patient satisfaction: Differences in patient satisfaction with care among breast, colorectal, lung, and prostate cancer were evident in national survey study conducted in England and published in 2008 the European Journal of Cancer, with breast cancer patients reporting the highest satisfaction and prostate cancer patients reporting the least.

3. Survivorship outcomes: A study published in 2006 in the New England Journal of Medicine found that 62.3% of the 10,397 adult survivors of childhood cancer reported at least one chronic disease, and compared to their siblings had an increased risk of having a at least one chronic disease following cancer.

4. Health disparities: As socioeconomic stress increases, quality of life has been found to decrease following cancer diagnoses in several studies:

Breast cancer:

Head and neck cancer:

Other cancers:

5. Fertility preservation: A study published in 2009 in the British Journal of Cancer reported that many patients are not given the opportunity or feel comfortable discussing fertility preservation with their healthcare providers.

Researchers often recruit patients and survivors to participate in their studies by a variety of ways:

• • Through oncologists or other healthcare providers
  • By posting a notice about their study on a cancer support website
  • By flyering in hospitals
  • Through regional cancer registries

Many times researchers will attempt to mail a letter to potential participants explaining their study, and then try to contact them through the phone.  Email is becoming an increasing mode of contact, although it can be more difficult to obtain email addresses if hospitals, doctor’s offices, or cancer registries do not collect this information.

Any study that is recruiting patients should be approved by an Institutional Review Board, which is a board comprised of researchers and administrators whose purpose is to review the safety and ethics of proposed studies.  In cancer epidemiological and outcomes research, just like in clinical trials, researchers usually have to obtain written informed consent from participants before they can participate in as study – an important point about which patients should always be comfortable asking researchers.

The cancer research community continues to learn a lot about how to best prevent, treat, and manage cancer, thanks to the willing participation of millions of patients and their families.  If you or someone you know has cancer and wants to contribute to researchers, get involved!

• Ask your doctor or healthcare provider about research projects you could be a part of
• Contact your local cancer center or university and ask about ongoing research projects
• Stay up to date and informed on research by visiting websites like www.mAssKickers.org
• Educate your friends about the importance of research
• If asked to fill out a survey or interview someone, consider the contribution you may be making to improving the health and well-being of others

In summary, the best way to contribute to ongoing tumor and cancer research, prevention, and control efforts is to educate and empower yourself about existing research and to participate in research when asked to do so. Even if it takes a few minutes of your time to fill out a survey or answer questions in an interview, remember that most of the medications, treatments, and therapies we have today are in part thanks to the millions of individuals who participated in research in the past. We can all do our part to fight cancer.

For more information about tumor and cancer research, please check out some of the following links:

1. National Cancer Institute: “The Nation’s Investment in Cancer Research” Summary:

2. National Cancer Institute: “Understanding prognosis and cancer statistics”

3. The National Library of Medicine: A great website to search for the latest and up-to-date research on cancer research:

4. National Cancer Institute Clinical Trials Database: If you want to look for open clinical trials by cancer type and other eligibility factors, this is a great place to start:

5. The World Health Organization Quality of Life Questionnaire: If you’re interested to see what a quality of life questionnaire looks like, go here:

By Erin E. Kent, PhD

University of California, Irvine

Department of Epidemiology