Informed Consent from Patients With Glioblastoma Is a ‘Big Thing’

It's essential for patients with glioblastoma and their families to properly educate themselves before making a treatment decision.

Cognitive impairments, such as a lack of short-term memory, and accelerated aging may occur in patients with glioblastoma, which is why it’s important for patients and their families to know what they can do to improve quality of life.

Glioblastoma is a type of brain cancer in which a fast-growing tumor forms in the glial tissue found in the brain and spinal cord, according to the National Cancer Institute.

Having informed consent is crucial, said Dr. Stephanie E. Weiss during an interview with CURE®. Patients should have the autonomy to independently make treatment decisions that best suit them and their lifestyles, she explained. However, Weiss emphasized that patients and their families must be well-informed and educated about the disease and treatment options before making a decision.

Weiss is the chief of the Division of Neurologic Oncology and professor in the Department of Radiation Oncology at the Fox Chase Cancer Center in Philadelphia.

She sat down with CURE® to discuss the effects of accelerated aging and neurocognitive dysfunction, interventions patients can receive and more.

CURE®: Why is it so important for patients with glioblastoma to understand the effect of accelerated aging and neurocognitive dysfunction?

Weiss: One reason is informed consent. When we treat a patient, we respect a person's autonomy and agency to be able to say, “Yeah, based on what you said, I want to do this,” or, “I don't want to do this.”

If patients are not well-informed and educated, if they've looked at bad news on the internet, they may not be making the best decision for themselves. So, this is a part of informed consent. For example, “If I treat this, we do know that after treatment, we [will] see that.” The context, of course, is if you don't treat [the tumor], patients’ life spans are shortened. And there are neurocognitive problems from the tumor getting bigger. So on balance, we feel the benefit outweighs the risk. But until you give those facts to people, you can't really have that conversation. So informed consent is a big thing.

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Also, I think it also helps us tell the patient, “Moving forward with your treatment, after you've received all your primary treatment and to this brain tumor, let us know what you're experiencing because there may be interventions.” So if people know to sort of be cognizant of the cognitive issues, that helps give us information about themselves, so we can guide them in the future.

What are some of these interventions?

Some have shown some helpfulness. There are medications we can give that can help alertness, and that alone can help, maybe not because it's addressing the underlying problem. Your thinking isn't going to be quite as sharp as it is when you're bright and rested. Any underlying deficit from their norm that a person has will manifest with fatigue, etc. Some of these alertness medications can help.

They are also complete other processes that can cause cognitive issues. So one condition, that can occur in anybody in the patient population, is called normal pressure hydrocephalus (NPH; abnormal buildup of cerebrospinal fluid within the brain’s cavities). It's essentially a whole other process not related to the tumor or treatment of a tumor. But memory issues may become the problem. We may see more of this in patients who've had brain tumors. Certainly, if you've received radiation for brain tumors, and maybe if you've received chemotherapy for brain tumors, so if I, as the physician, hear about the patient's symptoms, I can ask the right questions to figure out if this is maybe NPH. We actually have a potential therapy for that as opposed to some of these other changes which we just don't have the answers for that yet.

Receiving a diagnosis of glioblastoma may be overwhelming. What are some things patients and their families can do, especially knowing about accelerated aging and neurocognitive dysfunction?

Yes, this can be a tremendous left turn in a person's life and everybody who's close to them. What happens is, they will typically find a lot of people who really want to help. And that can also be overwhelming because two things happen. People want to help but they don’t know how — sometimes they collect information that is broad and varied in quality. And the other thing is, sometimes the patient and the family don’t want to constantly talk about their cancer — they need a break from it.

A good thing to think about upfront is, “OK, we need our time in the day where we’re just going to enjoy the day. It’s not all about a tumor.” So you can say something like, “After dinner, we’re not talking about this, including logical stuff or questions. We’re only going to do that during the day. We’re just going to do something relaxing in the evening.”

The other thing to do is if patients are getting overwhelmed with information and questions from well-meaning people, say “I love you, thank you for caring about me. This is what we’re going to do. It would be great and helpful to me if you could drive me when I get treatment every day for a few weeks.”

And maybe have a rotating schedule, that’s a concrete way they can help in terms of questions. For the rest, designate it to somebody who likes to be that information collector. Tell people that if they have questions about the cancer, to ask the designated person. Similarly, if there’s any new information a person wants to add, give it to the designated person.

Advocate for that. That way, patients don’t have to spend their time talking about it all the time.

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