Time Toxicity

I got a press release from Penn Medicine about a clinical trial they are conducting about a text-messaging tool that allows cancer patients to spend less time on appointments -- or, at least, the time waiting during appointments. 

The study is meant to address "time toxicity." 

If you’ve ever read a medical journal or clinical trial informed consent form (or this bog), you’ve seen the word “toxicity.” It means the physical side effects that are common with a particular treatment. Things like low blood counts or numbing in the fingers and toes. Most of us have dealt with this kind of toxicity.

A few years ago, I started hearing more about “Financial Toxicity” – the kinds of financial side effects that some about with cancer treatment. These are things like the cost of treatment, whether the full cost or whatever insurance doesn’t pay for. But also medications that we need to buy to deal with the physical side effects of treatment. And maybe the yoga or massages that help us cope mentally. But financial toxicity also includes things like the time we miss on our jobs.

As I've written about, I’ve read about Financial Toxicity because more oncologists are trying to pay attention to it. They’re making sure that the plans they formulate for us are not going to bankrupt us.

Time Toxicity is similar. It’s about a different set of side effects – all of the time that it takes to be a patient. This includes going to appointments at the oncologist office, and the blood draw station, and the imaging center, and waiting in line at the pharmacy. But it also includes things like taking naps to deal with fatigue, and even just staring at the wall and worrying.

The study from Penn Medicine involved an app that patients could use to check-in before treatment. It's not a Follicular Lymphoma study, though the patients did have cancer. They were able to use the app to let their medical team know about any symptoms they were experiencing before they received an immunotherapy treatment. The idea was that, if they had symptoms that would have meant they couldn't receive treatment, they were able to avoid the time it took to drive to the appointment, wait to be seen, have someone ask about the symptoms, have the medical team discuss it, and then determine that they were or were not able to have the treatment. 

What's interesting is that this was set up as a clinical trial. It allowed them to measure whether or not the app was effective and safe. If the app wasn't accurate, then that would affect how well the treatment worked and whether or not it hurt the patient. It wasn't just a kind of "this saved time, and that's always good" kind of thing.

One of my big concerns with something like this is that it might save us some time as patients, but then that time gets used elsewhere. So instead of seeing 10 patients a day, the oncologist can see 12 or 15. When concerns about time are all about "efficiency," someone loses out -- usually the patients. It means less time with the oncologist, because the priority is getting through as many patients as possible.

This study doesn't seem to be prioritizing "efficiency" and disguising it as concern about patients. Making it a clinical trial seems to help avoid that. It really is about effectiveness and safety, the same as any other clinical trial.

But it does make me think a lot about time, and how much time toxicity affects us.

A  work colleague of mine recently finished a successful year-long treatment for cancer. I don't know what type it is; they are very private about this experience. That is certainly their right. 

This colleague is still working, and is lucky to have a job that can be very flexible. Part of my job involves planning things out for us at work about 12-18 months from now. I had to tell this colleague how they fit into the long-term plan, and they were very concerned about it. “I don’t know if I can do this,” they told me. “I have brain fog, I’m exhausted all the time. By mid-afternoon, I just want to curl up and go to sleep.”

I started to say something, but I stopped myself. What I started to say was, “Yeah, but we’re talking at least a year from now. You’ll be fine then.”

I stopped myself because, of course, neither of us, both cancer survivors, knows where we’ll be in a year. But even more importantly, I know how cancer can mess with someone’s sense of time. It’s about not wanting to think too much about the future, because all we can think about is the present. It’s hard to imagine a time when we won’t be exhausted or worried or in pain. 

It's a complex thing, our relationship with time. 

Like Financial Toxicity, I hope more doctors are paying attention to Time Toxicity, and the essential elements of our Quality of Life. Like that ASH study on Travel Burden, this study from Penn Medicine seems to show that it's becoming more and more of an issue for oncologists. I hope that continues.