Transcript
Announcer:
You’re listening to ReachMD, and this is Advanced Treatments and Innovations from Mayo Clinic. Here’s your host, Dr. Charles Turck.
Dr. Turk:
Welcome to Advanced Treatments and Innovations from Mayo Clinic, on ReachMD. I’m Dr. Charles Turk, and joining me to discuss how we can improve the quality of life of patients with high-grade glioma is Dr. Alyx B. Porter. Dr. Porter is a neurologist, with a subspecialty certification in neuro-oncology, at Mayo Clinic in Phoenix, Arizona. Dr. Porter, welcome to you.
Dr. Porter:
Thank you so much, Dr. Turk, for having me today.
Dr. Turk:
Now to start us off, Dr. Porter, would you tell us how we can measure our patients’ quality of life after they’ve been diagnosed with a high-grade glioma?
Dr. Porter:
Absolutely. When patients are diagnosed with high-grade glioma, they’ve already gone through a combination of treatments that unfortunately can leave them different. Oftentimes, patients start out with some form of brain surgery, whether it be a biopsy or a resection. And having gone through general anesthesia followed by brain surgery certainly takes its toll itself, let alone the toll on the brain from the fact that the cancer is there to begin with. Following the surgical procedure, there’s a multimodal treatment approach that includes a combination of radiation and chemotherapy, directed towards the tumor itself. And unfortunately, the impact of the treatment itself, for this form of brain cancer, can be devastating. Routinely in the clinic, we are accustomed to using scales like ECOG or Karnofsky Performance Status, and using those scales, we make assumptions about their quality of life, and what that means. And so, for those in the audience who may not be as familiar with ECOG, for example, that’s the Eastern Cooperative Oncology Group; they’ve got a scale, ranging from zero, which is fully active, able to carry on all pre-disease performance without restriction to four, which is completely disabled, totally confined to bed or chair, and then finally a score of five is death. And so, many patients with high-grade glioma present with a two or a three, so they’re heavily dependent on a caregiver because they’re only able to do limited self-care. And so these are the types of scales or scores that are routinely implemented in the clinic, and we don’t yet have a standardized scale really that helps us incorporate those stressors, or levels of fatigue or angst that we know, impacts a patient’s daily experience. And so, we are actively working to be able to achieve that kind of score or that kind of scale that can be implemented routinely in the clinic.
Dr. Turk:
Alright, and what are some of the most common symptoms or factors that have the greatest impact on patients’ quality of life?
Dr. Porter:
Yeah, by far, fatigue ends up being the symptom that patients complain of most commonly. And we’re not talking about sleepiness or tiredness, but it’s a lack of energy that keeps them from being able to go about some of their activities of daily living, or the things that used to be able to interest them. In addition to fatigue, we often have patients that express concerns regarding their short-term memory, or their cognition. We recognize that there can be a significant grief that comes along with a diagnosis of high-grade glioma that’s experienced by the patient as well as their caregivers and loved ones. And that grief can be quite prolonged and turn into depression and anxiety. And patients often are facing kind of this existential crisis and concern about death, and that can be particularly overwhelming. And so, all of these symptoms in combination are areas where we’re really looking to move the dial because we recognize that the reason why we are recommending such aggressive treatments, including best surgical resection, chemotherapy, radiation, is that so patients can live. But we also want them to live well, which is why it’s so important that we start to address some of these factors pertaining to quality of life.
Dr. Turk:
Now, given those symptoms and concerns, Dr. Porter, what might be done to help us address them?
Dr. Porter:
Yeah, with fatigue being the most common symptom reported, there has been quite a long list of efforts that have been tried to mitigate fatigue. And in fact, we recently reported on a trial that I initiated and was a primary investigator on, looking at the impact of psychostimulants on reducing fatigue in patients who had complaints of moderate to severe fatigue. And unfortunately, what we found in this trial, looking at over 300 patients who were prescribed a medication called armodafinil at different doses, we found that that medication is not the answer that we were all looking for. And so ultimately what’s being recommended at this point is that each patient is really taken on a case-by-case basis. There have been other psychostimulants that have been tested – things ranging from methylphenidate to Adderall to now armodafinil, which was what our trial recently reported on. But we’ve not yet been able to find that one medication that can help mitigate that symptom in particular. And so, as we talk about some of the other confounding factors that can be contributing to fatigue – issues of depression, issues of changes in cognition – we really are encouraging providers to look at each of those symptoms individually to try to maximize their treatment with a hope that ultimately it impacts and improves the patient’s overall level of fatigue.
Dr. Turk:
And if we move away from the patient perspective for just a moment, Dr. Porter, would you tell us how caregivers of patients with brain tumors are impacted, and what might be done to help them?
Dr. Porter:
Yeah, absolutely. Brain cancer is unique in that the caregiver burden is much earlier in the onset of disease compared to what patients with other cancers might experience. And unfortunately, because of this, it often leaves both the patient and the caregiver particularly overwhelmed. It leaves them with a sense of being unprepared and frankly devastated, and so we do have a support group here at Mayo in Arizona that addresses the needs, not only of patients, but also caregivers, because we recognize that caregivers are in a unique group, and essentially they’re watching the patient, or they’re watching their loved one sort of transition from, in some cases, someone that they used to know to a person with a new personality trait, or something like that. And so that’s unique to folks with brain cancer that folks with other cancers may not experience. One of the things that we have recently started looking into is ways to really measure how the caregiver experience may be different than the patient itself. And what we found through doing surveys and using this novel tool that we implemented by iPad was that the concerns of the patient and the concerns of the caregiver are rarely the same. The stressors are different at different times. There’s a different perception about what’s happening and what the patient’s prognosis may be. There’s a different perception between the patient and the caregiver, and a different perception held by the provider. And so what this small pilot study that we did has shown us is that we really have to do a better job of making sure that we are addressing the needs of not only the patient, but also the caregiver, especially in brain cancer, where their role is so significant, and the burden is so great.
Dr. Turk:
For those just joining us, this is Advanced Treatments and Innovations from Mayo Clinic on ReachMD. I’m Dr. Charles Turk, and today I’m speaking with Dr. Alyx B. Porter about measuring the quality of life of patients living with high-grade glioma. Now, Dr. Porter, if we switch gears a bit and focus on palliative care, would you tell us what role it plays in the care of patients with brain tumors?
Dr. Porter:
Yeah, absolutely. There’s strong evidence that would suggest that early intervention with palliative care improves overall survival in addition to quality of life by reducing symptom burden in patients with lung cancer, for example. And so we started to look at that here at Mayo as it pertains to patients with brain cancer, and specifically for patients with high-grade glioma. And what we’re moving toward is early integration of palliative care to help normalize and really add tremendous value to the patient’s experience with early implementation of this specialty. So, historically people have associated the word “palliative” with hospice, and so what we’re doing is working to really disempower that direct association. Yes, there is a spectrum of palliative care, but by introducing palliative care early, we really want our patients to know that these are the quality of life specialists – experts, if you will. And so, we want them to be integrated as early as time of diagnosis, so that we can make sure that we are fully attentive, not only to the care of the cancer and the management of the cancer itself, but we also want to make sure that we’re equally focused on the patient’s sort of day-to-day experience, and that includes the early intervention of palliative care.
Dr. Turk:
Now, before we wrap up, Dr. Porter, what’s the greatest takeaway you’d like to leave with our audience today?
Dr. Porter:
The future really is focused on multidisciplinary clinics with palliative care from the onset. The future includes apps and iPad tools that really point to resources that can help address the immediate needs of patients and caregivers, to really help providers take even better care of patients while we make sure that we can really address their concerns. While we haven’t made as much progress as we would like, in terms of drug interventions for patients with high-grade glioma, we certainly have made some progress in terms of quality of life. And my goal is to make sure that patients with high-grade glioma live the highest quality of life for as long as they can.
Dr. Turk:
Well, those are some great thoughts for us to consider incorporating into our practices. I want to thank our guest, Dr. Alyx B. Porter, for joining me to discuss the quality of life of patients living with high-grade glioma. Dr. Porter, it was great having you on the program.
Dr. Porter:
Oh, thanks so much. It was my privilege.
Announcer:
You’ve been listening to Advanced Treatments and Innovations from Mayo Clinic. To access other episodes of this series, visit reach-m-d-dot-com slash-advanced-treatments-innovations-mayo-clinic, where you can Be Part of the Knowledge.