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NCI Office Focuses on Long-Term Survivorship Issues

NCI Office Focuses on Long-Term Survivorship Issues

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.

Dr. Meadows serves at NCI on a part-time basis while continuing as director of the Division of Oncology and professor of pediatrics at the University of Pennsylvania Medical School. She talked at her NCI office with Oncology News Interna-tional's Washington Bureau Chief Patrick Young about 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 from the scientific community and addresses the problems and issues that survivors face. The reason is to be able to provide information to survivors and to people who plan therapy. Cancer treatments should be based not just on cure, remission, or survival, but on information about what happens to survivors in the long-term.

ONI: Why is the NCI, which is essentially a medical research institute, 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 reduce the morbidity and mortality associated with cancer. If you find survivors suffering untoward morbidity or dying five years after you thought they would 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 survivors are going to require extraordinary rehabilitation and long-term medical care resources, obviously you want to rethink how you treat their cancer in the first place, and perhaps conduct the kind of research that is going to 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 this fiscal year. I am hoping that for the next couple of years, we will have at 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 treatment is the way patients view what has happened to them and the quality of their survival.

ONI: Will you direct research at these issues?

DR. MEADOWS: We've already sent out requests for proposals from the scientific community. There hasn't been a major effort to look at survivors in the long term. Many studies end in one or two years. So we expect to find 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 sensitive to the treatment or predisposes them to more than one cancer.

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

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

DR. MEADOWS: There are many issues involved so we have enumerated the type of things we want the scientific community to study. Some of those have 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 brain for the long-term after receiving certain treatments?

We are interested not just in the effects of single agents but also in how drugs interact with radiation to the heart, and does that produce congestive heart failure or pulmonary hypertension? What are the medical long-term effects of those combinations, and what are the doses that are safe 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-term effects of these drugs on the kidneys. Then there is the question of drugs that impair sexual and reproductive function. And, of course, questions concerning 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, the economic impact of following survivors is important. If we have many survivors who are examined frequently for effects that occur extremely rarely, we will not be using our resources wisely.

We don't know the best way to follow survivors. We don't know whether it is important to do surveillance, laboratory studies, and scans, or whether we 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 doing it and to get insurers to buy into it.

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

ONI: How do you envision the program interacting with clinical oncologists?

DR. MEADOWS: I expect that clinical oncologists are going to be pushing to have this research so that they will have some information on which to base their clinical decisions. I think the term "evidence-based medicine" is so simple--to have evidence. And that's just the point of this office. We need some evidence that will direct the physician at all 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 the data.

We also hope to create agreements that will permit cooperative clinical trials groups to track their patients in the long-term. Maybe that will encourage more people to enroll in clinical trials and more physicians to recommend clinical trials to their patients. But we also have to provide the funds that will allow the clinical trial groups to keep track of what happens to patients.

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

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

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