MANY ADVANCED CANCER PATIENTS view medicines as a way to extend their lives so they can meet their goals of being present for an upcoming wedding or the birth of a grandchild. But for many others, survival isn’t the main goal. Their quality of life is just as important, if not more. Yet a recent study, published April 28, 2022, in JAMA Oncology, found that only 24% of drugs in later-phase clinical trials improved quality of life for advanced cancer patients.

Many of the cancer drugs tested, 63%, did not affect quality of life, according to the meta-analysis, which studied 45 phase III clinical trials published in 2019 that included a total of nearly 25,000 participants. However, 13% of the drugs decreased quality of life.

“Studies are really aimed at endpoints that lead to FDA [Food and Drug Administration] approval. That’s what they’re hyperfocused on,” says Arif Kamal, chief patient officer for the American Cancer Society, who was not involved with the study. “The FDA does consider quality of life, but generally not with the same weight as disease outcomes. This is particularly true for quality-of-life changes separate from physical side effects, like financial and emotional concerns.” That’s likely why so few of the drugs improve how a person feels, he says.

For some patients with advanced cancer, that’s OK. Their goal is to survive as long as possible, and they’re willing to put up with a decreased quality of life to live longer, Kamal says. But for others, living longer isn’t the goal—they want to enjoy the time they have left and feel good enough to travel or pursue their hobbies. Improved survival may be a benefit of a drug, but it may not be worth it if it means not being able to play with the grandkids. So before starting a new medicine, it’s important to identify what you hope to get out of it and to make your care team aware of that goal.

Because there is no guarantee that experimental medications, or even some approved medicines, enhance quality of life, it’s crucial that patients interested in starting a new treatment ask their doctor questions. For example, if your doctor suggests you consider starting a drug that’s “better” than what you’re currently taking, ask how it’s better. Does it increase quality of life? What about survival? Then you can determine if it’s a fit for your goals.

If a medication does improve survival, by how much? “It’s very important for patients to ask their physicians, ‘On a very practical level, what can a medication do for me?’” says Joseph Samuel, first author of the study and a doctor of pharmacy and fourth-year medical student at Queen’s University in Kingston, Ontario. “The evidence can say it prolongs life, but by a value that’s insignificant. So, it’s important to get an understanding of the magnitude.” Some medications may extend survival by a few weeks, while others may add months or years to survival, he says.

If a medication improves quality of life, it’s also important to ask by how much, Samuel says. A treatment that makes the average patient go from vomiting 10 times a day to nine times a day may not be worth it, especially when considering the cost. But if the drug cuts in half how often you throw up, it will be more beneficial to you.

Be sure to ask what the treatment entails, Kamal says. If it requires you to come into a clinic three times a week but your main goal is to travel, it won’t be a good fit.

If you come to your doctor with a medication you heard about and are interested in, it’s important to ask if it’s a good match for you medically, says Samuel. Is it designed for people with your diagnosis? Are you in the age group of participants it was tested on?

And if you’re interested in signing up for a clinical trial, ask your doctor whether there are other approved treatments you should try first. If you want to participate in the trial, Samuel recommends asking about the study design. What percentage of participants will receive the medication being tested? Understand that you may be randomly assigned to a control group, and you may not know whether you’re getting the drug being tested or not. Also, ask about the drug that participants in the control arm will be taking. Often it will be the standard course of treatment for your condition, Kamal says.

Don’t forget to ask how long the trial will last but understand that you can drop out at any time, for example, if your quality of life drops below a tolerable level. Just because you consent at the beginning doesn’t mean you consent for the entire study period, Kamal says.

Lastly, Samuel suggests bringing someone with you to appointments when you ask about new drugs. Having more ears in the room helps decrease the chance of miscommunication, and the person you bring can ask questions you may not think of.