Treatment for RCC: Educating Patients on Followup and Adverse Events


Comprehensive insight on how best to communicate potential adverse events and followup strategies with patients going on therapy for RCC.

Hans Hammers, MD, PhD:
Laura, you are my right hand for all of these educational things, and you have such experience in following patients along with me. As you know, there’s so much to learn, and it’s such a steep initial learning curve. Tell us how you approach patient education and information.

Laura Sanza, PhD, MPAS, PA-C: The most important thing I do in preparing the patients for treatment is read the room, if you will. That one-on-one personal interaction helps me determine how to tailor my discussion of education, how the logistics for the treatment will go, what adverse effects to look at, and what to report. Not every patient comes in with family, so I need to determine at what level to discuss treatment and with how much detail, whether I should use diagrams and/or charts, how fast or slow to go, or when to pause. Then I do spend some time reviewing the logistics and the adverse effects. I know they’ve heard it all from visiting with Dr Hammers in the consent process, but they probably were in shock and need to hear it multiple times. First, I reassure them that this is not the only time we’ll go through all of this, and I reassure them that on every visit if we need to, we return and revisit how often will they get treated and scanned, and what adverse effects to look at.

Then I go into some detail, whether it’s talking about immune therapy, or talking about the targeted therapy, about what to look for. I spend a good deal of time, if they are going to receive immune therapy, reexplaining that because we are turning on the immune system to fight the cancer, there is the potential that the immune system can also fight other organs in the body, which we don’t want to have happen. And we don‘t know in whom this will happen. It doesn’t have to happen to be meaningful and effective, so I don’t want them to hope that it happens under the idea that then it would be more effective. I go into detail, pretty much listing every possible organ that can be inflamed and what that might look like. For example, they may have unrelenting headaches and visual changes if the pituitary gland is inflamed, and we refer to that as hypophysitis. They might have a change in their respiratory status. They might have new shortness of breath carrying out activities that they normally would not get winded from. They might develop a cough. Just walking to the bathroom might render them needing to sit down and rest. If these things are new to them, that could be inflammation of the lungs, which we refer to as pneumonitis. They might develop diarrhea, cramping, blood in the stool, and we would want to know that because that could be inflammation of the colon, which we refer to as colitis.

I go through everything like inflammation of the muscles, stiffness, and pain. I give them generic symptoms, and then I give them an example of what if might look like in their life. like you might have difficulty getting out of your car. They may not associate that with muscle weakness. I give it a name, such as myositis, and they need to call. I explain that their endocrine organs can be affected, such as the adrenal gland, the thyroid gland, and even the pancreas. They could develop adrenal insufficiency, or hypothyroidism, or even diabetes. Subtle things like fatigue, nausea, vomiting, unexplained changes in their blood pressure, an inability to get out of bed, would all be things to report. Even a rash, which could be dermatitis, no matter how little, they should feel comfortable to report it. I reassure them that no amount of reporting would be considered as exceeding your limit. We don’t keep count of how many [changes in] MyChart [electronic medical record], and they’re always saying, “I don’t want to be a pain.” I reassure them, “No you are not being a pain, you’re being an advocate.” We’ll judge if that’s not worrisome, hold the course, or say, “That’s concerning, please come in.”

I review with them the different ways of communicating, and the utmost importance of communicating. We have an electronic emailing system, which [is part of] MyChart. They can type out messages, and we type back, or it may prompt a phone call. They can call directly and speak to a triage nurse. They can request to be seen in our acute care clinic, where we treat new onset symptoms of anyone undergoing treatment with the hope of avoiding them having to go to the ED [emergency department]. Most of the time, we can address the symptoms and stabilize them so that they never have to go to the ED. I spend a fair amount of time telling them to not be embarrassed. No one wants to call and tell you how much diarrhea they’ve had, what it looks like, or the volume. These are conversations that most people want to ignore, and a lot of people think to themselves, it’ll just go away. I try to reassure them that it might go away and we might just to be able to watch it for a day, but it is better to let us know so that we can be on top of it and ready to jump in.

Likewise with the targeted drugs, I might spend some time explaining to them about how they often increase blood pressure. They can increase blood pressures to stroke level, and the seriousness of that, and the importance of keeping a log daily, writing it down, and reporting to us through MyChart. If they exceed certain limits, we’ll give them the criteria to report. We explain that we often may have to start them on blood pressure lowering medication to enable them to continue on the medications safely. They have the potential to bleed, and they should report bleeding anywhere, whether it’s in the urine, or in the stool, or from their nose. I reiterate that fatigue and decreased appetite can be pretty common with the targeted drugs, and we’ll need to keep on top of that, and they should trend their weight, and monitor and report their change in ability to carry out activities. I explain the importance of letting us know is so that we can offer support options like antidiarrheal [drugs], blood pressure lowering medication, to help minimize the adverse effects or make them more tolerable. We can also make judgments about whether they need breaks or when to take breaks. Even in dire situations where there’s so much toxicity and they can’t stay on the drug very long without having to take long breaks, then we might consider dose reduction.

All in all, I give them the opportunity to hear again and make lists, but I also read who needs to come in during the beginning more frequently, so that they get the feel of what to report about what’s going on and they’re not in a panic. Some folks may need to be seen weekly in the first month. Others need to be seen every couple of weeks, while others may not need to be seen again until their next infusion. I read the room and tailor the education and the plan to each patient and their needs.

Transcript edited for clarity.

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