How I did it: Spotlighting the brutal side effects of cancer treatment

Clinical trials often don't measure the tolerability of cancer drugs - a key outcome that can determine a patient's quality of life and likelihood of sticking with treatment.

Veteran freelance journalist Charlotte Huff, who frequently writes about cancer, explored this little-examined dilemma in her story, "The Side Effect Roulette of Cancer Treatment," which earned second place in AHCJ's Award for Excellence in Health Care Journalism consumer/feature (small) category.

According to Huff's reporting, some researchers and patients are pushing for better information on the frequency and severity of symptoms such as pain, constipation, hair loss, and nausea. The FDA recommends but does not require that clinical trials include patient-reported side effects.

Huff talked to AHCJ recently about how she reported the story. The conversation has been edited for length and clarity.

What was the genesis of this story?

I wrote an article for STAT about time toxicity of cancer treatments. Some of the researchers and doctors that I talked to were really passionate about how cancer treatment studies don't dig too much in terms of quality of life. They referenced a couple of studies. One in particular that was published in The BMJ shed light on the fact that studies either don't quantify side effects or use really vague terms like "tolerable" or "acceptable."

Why did you feel that Undark was a good place for this story?

The editors provide space to write a bit longer, and I knew it was going to take space to lay out the problem as well as include some patient perspectives. They like looking at research with a critical eye, and they're not afraid to get into wonky details.

Was there anything that you learned that really stood out or surprised you in the course of reporting this?

What I was surprised by is that side effects for cancer drugs are assessed primarily by doctors and other clinicians, who frequently see side effects like nausea and diarrhea. They may not view a particular side effect as severe in terms of how devastating it can be for a patient's quality of life, their ability to work, or to care for their kids.

Did you gain any insight as to why that is?

I was told that the focus of drug studies is safety. If they are looking at diarrhea they ask, is it landing someone in the hospital? They may not be assessing how much it's impacting a patient's daily ability to function. For example, are they tied to the house virtually all of the time?

How can journalists do a better job of reporting aboutside effects?

First and foremost, ask about side effects when reporting about a new or emerging treatment. It would be great if stories included the top three side effects along with the percentage of patients that reported experiencing the side effect.

If it's a recently approved drug, it's important to ask not only about existing side effects - because there's usually a laundry list - but which side effects are going to be closely monitored in post-marketing studies, in order to provide the reader with a better sense of the areas of concern.

Watch out for vague descriptions like "minimal side effects." Reporters also can ask, "How is the information about side effects collected?"

How did you locate patients to discuss their experiences?

Since I write so much about cancer, if patients email me after a particular article, I will often ask them if I can hold on to their name in case I need to talk to patients for future stories. For this article, I reached out through that network and asked them to let other cancer patients know that I was writing about side effects and that they could get in touch if they're interested in talking to me. I also went through social media groups and either asked if I could post what was reporting for Undark or write up something for the moderator to post on my behalf.

I wanted to make sure to include two patients: one who had such bad side effects that they stopped the treatment or changed treatments and a patient who was willing to just deal with whatever in the hope of improving survival.

Did you find that sources were eager to talk about this?

Yeah. I actually got quite a few emails afterwards from patients saying "I'm really glad you wrote about this," and, "This isn't talked about enough." Cancer patients are willing to deal with a lot because of the stakes involved, but they very much feel like the side effects are glossed over in their conversations with doctors.

Do you have other suggestions for journalists?

I think there needs to be more reporting about quality of life issues related to cancer treatment. Terrific breakthroughs are happening on a regular basis, but when you talk to cancer patients they feel like their experience doesn't necessarily reflect the headlines.