The Hidden Cost of Cancer Treatment – Time Toxicity

Cancer treatment can take hours of your time. Traveling to the treatment center, waiting for your turn in waiting rooms, dealing with treatment side effects, and many other things will take up your valuable time. These periods may be longer or shorter depending on the cancer and its stage. 

This is known as time toxicity , and many oncologists recommend addressing it when discussing treatment with a patient.

The time lost during cancer treatment can be considerable. It is especially concerning for patients with terminal/end-stage cancer . For example, gastrointestinal oncologist Dr. Arjun Gupta of the University of Minnesota in Minneapolis said that people with advanced gastrointestinal cancer may spend 1 out of every 4 days outside treatment traveling to and from the hospital. This is enough to offset the improvement in survival that patients with advanced solid (organ/tissue-derived) cancers expect from the latest treatments, usually around 2 – 3 extra months, he said.

A Lack of Data

How patients spend their time while receiving treatment has been studied quite extensively in cardiology and some other fields. In oncology, however, it has only recently begun to attract attention.

Dr. Gupta commented on this gap: “Perhaps oncology was busy paying more attention to many topics, from celebrations and recent advances with their marginal survival gains to the daily demands of cancer treatments .”

Similarly, colleagues wrote in the Journal of Clinical Oncology (JCO) that, in general, "oncology professionals are not doing a good job of acknowledging, measuring, or weighing the impact of time toxicity" , adding: “This must change.”

In addition to discussing survival benefits, side effects, and out-of-pocket costs, patients should be informed in advance about the time commitments they can expect from different treatments so that they can weigh their options as fully as possible. Choosing more extensive treatment is not always wrong. On the contrary, hematology/oncology specialist Dr. Tim Brown of the University of Pennsylvania in Philadelphia said that patients "should have the choice to spend their time as they see fit" .

The problem in oncology is that very little research has been done to measure the time burden of cancer treatment. Apart from their personal experience, oncologists therefore have little information to pass on to patients.

Gupta said, "as a result, time toxicity remains a very hidden cost of cancer treatment " .

Time Toxicity Should Be Measured

An effort is now underway to close the data gap on time toxicity in cancer. Gupta's team is analyzing completed clinical trials to estimate how much time patients spend on treatment-related activities. Analysis of the first study will soon be published in the Journal of Clinical Oncology.

The team's next step is to engage interested groups to include time toxicity as a potential endpoint in future studies.

Ultimately, Gupta wants to see the FDA (US Food and Drug Administration) require the measurement of time toxicity in cancer clinical trials. His team suggests that "days at home" would be a metric that is easy to measure and understand.

"We have received very encouraging responses to this idea from all stakeholders in general, and most importantly from patients and patient advocates. We are still at an early stage, but overall we are building consensus within a working group showing that it is possible to measure time toxicity. We are making this more formal... So that the science can move forward."

Lessons from Losing a Loved One

Other groups are also moving the science forward. Recently, researchers led by Vinay Prasad at the University of California, San Francisco reviewed pivotal trials of 13 metastatic cancer drugs approved by the FDA between 2009 – 2022. The researchers found that patients in the experimental arms spent a median of 16 additional hours per month on trial-related activities compared with patients receiving best supportive care. Of this time, 5.3 hours were spent traveling. This additional time amounts to at least 4- 5 days per month, a calculation that does not include time spent receiving infused drugs or time taken up by side effects.

Echoing Gupta's team, Prasad and colleagues say that future trials "should prospectively assess time spent in treatment and calculate the actual days gained at home" .

Similarly, a team at East Carolina University in North Carolina recently conducted a study of patients with early-stage pancreatic cancer treated with curative intent. Mean overall survival was 17.5 months, but the analysis showed that patients spent 11% of their time in the clinic. These findings were similar to those of an earlier study that found that patients with metastatic pancreatic cancer spent approximately 10% of their remaining days in healthcare settings. Much of this time is spent traveling and in waiting rooms.

For some patients, the time burden is even greater. In the Carolina University study, researcher and pancreatic surgeon Dr. Rebecca Snyder says that patients with additional illnesses besides cancer spent much more time interacting with healthcare staff.

For Snyder, time toxicity is a personal issue. Synder, who lost her mother to advanced lung cancer, movingly describes in JAMA how rapidly the disease progressed.

“She lived for a very short time.” Snyder recalls that her mother did not have quality of life because treatments that she later regretted made her seriously ill. "It really had an impact on me. It provides a framework for how I think about this."

“Time toxicity is an outcome measure that is entirely about patients. It is information patients need to know when making decisions.”

A Proactive Approach

A group of physicians based in Philadelphia is taking a different approach to time toxicity: they are using a text messaging app to save cancer patients time.

Researcher Timothy Brown of the Penn Center for Cancer Care Innovation at the University of Pennsylvania explained that they use the app to check for side effects experienced by patients receiving immunotherapy. If patients report that they are well, the app allows them to skip a routine visit.

The team recently reported in JAMA Network Open that the approach was safe, with a 0% false-negative rate. The next step is to examine how much time patients save by using the app.

Brown says the following about time toxicity: "I think it is really important to take a step back and make sure that what we recommend and prescribe for patients is not excessively burdensome and is consistent with their treatment goals. I think understanding time toxicity gives us another tool to do that."