NCI Office Focuses on Long-Term Survivorship Issues

June 1, 1997

ROCKVILLE, Md--Last year, the National Cancer Institute established the Office of Cancer Survivorship, and NCI director Richard D. Klausner, MD, named Anna T. Meadows, MD, to head its efforts to explore issues of the physical, psychological, and economic well being of cancer patients.

ROCKVILLE, Md--Last year, the National Cancer Institute establishedthe Office of Cancer Survivorship, and NCI director Richard D. Klausner,MD, named Anna T. Meadows, MD, to head its efforts to explore issues ofthe physical, psychological, and economic well being of cancer patients.

Dr. Meadows serves at NCI on a part-time basis while continuing asdirector of the Division of Oncology and professor of pediatrics at theUniversity of Pennsylvania Medical School. She talked at her NCI officewith Oncology News Interna-tional's Washington Bureau Chief Patrick Youngabout the goals and early progress of the new cancer survivorship program.

ONI: What is the purpose of the Office of Cancer Survivorship?

DR. MEADOWS: The idea is to focus on research that comes fromthe scientific community and addresses the problems and issues that survivorsface. The reason is to be able to provide information to survivors andto people who plan therapy. Cancer treatments should be based not juston cure, remission, or survival, but on information about what happensto survivors in the long-term.

ONI:Why is the NCI, which is essentially a medical researchinstitute, focusing on survivorship as an issue?

DR. MEADOWS: Survivors are what the whole thing is all about.The purpose of medical research is to improve the lives of people, to reducethe morbidity and mortality associated with cancer. If you find survivorssuffering untoward morbidity or dying five years after you thought theywould be cured because of something that occurred during their treatment,you want to change the treatment.

You have to deal with cancer survivors in society, and if survivorsare going to require extraordinary rehabilitation and long-term medicalcare resources, obviously you want to rethink how you treat their cancerin the first place, and perhaps conduct the kind of research that is goingto help you identify better treatment alternatives.

ONI: What is the Office's annual budget?

DR. MEADOWS: We are going to spend about $2.5 million for thisfiscal year. I am hoping that for the next couple of years, we will haveat least $4 million a year.

ONI:What aspects of survivorship will the Office address?

DR. MEADOWS: The main problem that overrides every physiologic,reproductive, and medical long-term effect of cancer and its treatmentis the way patients view what has happened to them and the quality of theirsurvival.

ONI: Will you direct research at these issues?

DR. MEADOWS: We've already sent out requests for proposals fromthe scientific community. There hasn't been a major effort to look at survivorsin the long term. Many studies end in one or two years. So we expect tofind out more about what happens in the long-term.

One serious long-term side effect is second cancers--not a recurrence,not a tumor in a paired organ, but a totally different kind of cancer.Individuals get those second cancers not just because of their treatment,but also because of some gene, or genes, that either makes them more sensitiveto the treatment or predisposes them to more than one cancer.

These occurrences are also important to the scientific community becausethey can teach us about the genes that predispose to cancer and lead toprevention.

ONI:You held a meeting late last year to look at where theoffice should go. Have you now set a direction for the near term?

DR. MEADOWS: There are many issues involved so we have enumeratedthe type of things we want the scientific community to study. Some of thosehave to do with physiological long-term effects (by which I mean 5, 10,and 15 years). What are the effects on the heart, the kidney, and the brainfor the long-term after receiving certain treatments?

We are interested not just in the effects of single agents but alsoin how drugs interact with radiation to the heart, and does that producecongestive heart failure or pulmonary hypertension? What are the medicallong-term effects of those combinations, and what are the doses that aresafe in terms of what you can expect for the future of survivors?

We use a lot of platinum compounds and nobody has studied the long-termeffects of these drugs on the kidneys. Then there is the question of drugsthat impair sexual and reproductive function. And, of course, questionsconcerning quality of life really pervade everything we study.

ONI:Do you have other research goals?

DR. MEADOWS: There are two more things I will mention. One, theeconomic impact of following survivors is important. If we have many survivorswho are examined frequently for effects that occur extremely rarely, wewill not be using our resources wisely.

We don't know the best way to follow survivors. We don't know whetherit is important to do surveillance, laboratory studies, and scans, or whetherwe just need to talk to patients to find out what problems they are experiencing.

So a big chunk of our health care system is devoted to following survivors.The goal is to find the most efficient, most cost-effective way of doingit and to get insurers to buy into it.

The last aspect has to do with intervention. What can you do to helpsurvivors while they are being treated and afterwards? How do you get thoseindividuals to comply with the recommended follow-up? How do you informthem? Education is one thing, but getting people to do what you want themto do, changing behavior and changing attitudes, is different from education.

ONI: How do you envision the program interacting with clinicaloncologists?

DR. MEADOWS: I expect that clinical oncologists are going tobe pushing to have this research so that they will have some informationon which to base their clinical decisions. I think the term "evidence-basedmedicine" is so simple--to have evidence. And that's just the pointof this office. We need some evidence that will direct the physician atall points in time of a cancer diagnosis.

We hope that the people interested in finding answers will develop research,apply for funding, get the answers, write the papers, and disseminate thedata.

We also hope to create agreements that will permit cooperative clinicaltrials groups to track their patients in the long-term. Maybe that willencourage more people to enroll in clinical trials and more physiciansto recommend clinical trials to their patients. But we also have to providethe funds that will allow the clinical trial groups to keep track of whathappens to patients.

ONI: Does managed care pose any obstacles to these goals?

DR. MEADOWS: We have to educate managed care companies. If weare more efficient in the way we treat patients because we produce fewerlong-term side effects, then people who take the long view are going tobe convinced that this is actually a cost-effective way to treat cancerpatients. And we hope that they will take the long view.