New cancer treatments should inform patients about quality of life beyond side effects

Every doctor or nurse has “the one” — that memorable patient who made a career-shaping impression.

For me it was a 13-year-old boy with leukemia. I’ll call him Joey, although that’s not his real name. When I met him 20 years ago, childhood leukemias, like acute lymphocytic leukemia, were generally considered curable. What Joey had, acute myelogenous leukemia, wasn’t.

Joey had already been through chemotherapy several times, which had left him exhausted and ill. Each one had failed to put his cancer into remission.

In a last-ditch effort to prolong Joey’s life, he underwent a bone marrow transplant with cells donated by his father. Because it was an incomplete match, the transplant came with life-threatening side effects. Joey was wracked with seizures and repeat infections. Just six months after the transplant, he died without ever once having been able to step outside the hospital.

It was devastating for Joey’s family — and a wake-up call for me.

When I first started my career as an oncology/hematology nurse practitioner and educator more than 25 years ago, the main goal of cancer treatment was usually to extend life, no matter what the quality of that extra life was. Joey’s experience made me face a moral dilemma — was this the right approach, or should we ensure that whatever extra time we are giving to patients is actually worth living?

Fast forward a decade. I had left nursing to pursue a career in pharmaceutical drug development. Breakthroughs were being made in understanding cancer that led companies like ImClone, where I then worked, to develop targeted therapies.

It was a heady time. Many believed that a cure for cancer was in sight, and that research would create new therapies that extended life while maintaining its quality. But cancer is a formidable and adaptable enemy. The targeted therapies developed at the time were important incremental improvements, but they weren’t the hoped-for panacea.

I’m now the CEO of Delcath, an interventional oncology company focused on the treatment of primary and metastatic liver cancers. We’ve developed a system to deliver high-dose chemotherapy drugs directly to liver tumors, which limits their effects on the rest of the body. The work is a good fit for an idealist like me who believes that maintaining or improving quality of life should go hand in hand with treating cancer.

In the United States, quality of life has taken a back seat to other, more tangible clinical endpoint metrics. That’s not the case in Europe, where researchers, physicians, and patients seem to be more comfortable talking about physical, mental, and emotional health.

European health care systems have long focused on the need to incorporate quality of life in their treatment options. They even determine reimbursement based on quality-adjusted life years, a formula that measures both the length and quality of life. The World Health Organization has noted that the main goals of cancer treatment are not only to cure or prolong patients’ lives, but also “to ensure the best possible quality of life for cancer survivors.”

I’m not suggesting that the US move to a European reimbursement system, nor am I suggesting that companies currently working on the latest pathway inhibitor or antisense therapy shelve their development programs if they fail to meet minimal quality-of-life thresholds. I believe that cancer care will always be best served by more options, not fewer ones.

But I would like to see more companies explore cancer therapies or regimens that put a premium on patients’ satisfaction with their lives during treatment. At the very least, quality-of-life information should be made available to clinicians and patients so they can understand and weigh all aspects of various treatment options.

Some people don’t care much about how a treatment affects quality of life. They want to fight with their last ounce of strength to get to a particular milestone, even if the quality of the extra life is poor. For others, though, quality of life is as important as length of life, or maybe even more so.

My company has been collecting quality-of-life data in our clinical trials since their inception, as have many other pharmaceutical companies. However, there is currently little outlet for us to leverage this information. Eventually, we and other like-minded industry leaders would like to see quality-of-life results be incorporated into drug labels — the documentation that accompanies each drug — to provide doctors and patients with details about the ways in which a drug should be used and the side effects it may cause.

As patients become more and more empowered in all aspects of their care, they will begin to demand that quality-of-life data be incorporated into their treatment discussion. The pharmaceutical industry should be prepared to meet this demand and help physicians and patients understand that cancer therapy and good quality of life are not mutually exclusive concepts.

Jennifer Simpson, PhD, is CEO of Delcath Systems Inc. in New York City.