Insights From: Maciej Mrugala, MD, PhD, MPH, University of Washington Medical Center; Suriya Jeyapalan, MD, MPH, Tufts Medical Center; Daniela Bota, MD, UC Irvine Medical Center
Daniela Bota, MD: I think one of the main challenges that people have is the societal acceptance of the device. Unfortunately, people that are not familiar with the existence of the device still look at our patients. If you are a patient that has a young family and you want to go to the children’s games, or the children’s school and the PTA, or if you are an older patient and you want to go see the grandkids, or people that want to be socially active and go to their place of worship or go to the restaurants or the beach, just having people staring is very uncomfortable. So, the way in which we deal with that is that we advise our patients about different ways that they can cover the device. A lot of our patients wear scarves, hats, and even very loose wigs. And that makes it almost invisible for the people that are not familiar with the device, and allows them to enjoy their activities without worrying.
The other thing is related to the fact that we do encourage a 75%-of-the-time use of the device. But, as I explained to many of my patients, that was established over a 2-week period. So, if you calculate the number of hours that you need to use over a 30-week period, you’re going to find out that you could take, at times, half a day without the electrodes, without the device, to do activities that are very important to you, as long as over the period of 2 weeks, you are compensating for those hours so you achieve the 75% or better, if possible, compliance.
Maciej Mrugala, MD, PhD, MPH: In most cases, the device is portable, so patients can use it outside of the home. They don’t need to be home, plugged into the electrical outlet all the time, since the device does have a battery pack. So, they can go around. I had a patient successfully bicycling with the device. I had a patient who loved to exercise every day. In his particular case, because he was sweating profusely while exercising, he would take a break from the device. For 1 hour, when he would go to the gym, he would take the treatment rays off from his scalp and then reapply them. It is somewhat cumbersome to do every day, but, again, the patient really enjoyed exercising, and we found, to preserve this quality of lifestyle for him, that it would be fine if he did it every day.
I think, in general, patients in colder climates will do better with this device. There is a little bit of heating occurring while it is being used, so definitely in the northern United States, it’s a little bit more amenable to treatment, as opposed to the South where, especially in the summer months, it can be very hot and wearing it might be a little bit extra uncomfortable. These are some of the practical implications of using the device. Traveling with it is definitely also feasible. Patients can travel with it and they can fly with the device as well, so there are no major restrictions in terms of transportation and travel.
It really depends heavily on the attitude towards the technology. Some patients really embrace it, either based on the data or based on the mechanism of action. Patients who have a background in physics or biology are very much fascinated by the way the device works, and, for them, this is a good enough reason to use it. Some people are data-driven, so when they see the results of the study in newly-diagnosed patients, that speaks to them. And if there is a patient that has done well and is willing to talk to them, that’s, again, something that I sometimes use. I put the patients in touch, of course, following all the HIPAA guidelines, but I’ve done it before and this was also successful, seeing another patient using it and doing well with it.
Daniela Bota, MD: It is very important for the glioblastoma patients to have a good support network. We have to remember that many of the patients have seizures, so there are going to be periods where they cannot drive. Who is going to take them to the appointments? Who is going to help them shop and take care of their daily business if they don’t have somebody being there for them? And so, many of the patients unfortunately have cognitive problems with executive functions and with depression, and this is when having people around them to encourage them to function as their support team is very important.
It also is important to know that we’re sure of patients’ compliance with taking the treatment. If you cannot remember very well what your treatments are, how are you going to remember to take them? And this is something that I always talk to our residents about when they see our patients in the hospital—not only to talk to the patient and instruct the patients about what they need to do, but to identify who is in the patient’s network. Who are the people that our patients count on? And be sure that everybody is recognized, as well as educated, about what these things are that the patients need in order to be successful with the treatment.
And going back to the newest approval in the field to Optune, we talk about the fact that the patients need to shave their hair in order to be able to wear the electrodes. And you can imagine that if you have a neurological impairment, it might be very difficult for you to shave the hair yourself. You need the patients to apply their electrodes not in random positions, but in the positions that we have determined for them, and we give them the maps in order to make sure that we get the maximum efficacy.
It is hard for people with visual impairments to look in a mirror, to look at maps, and at the same time put the electrodes on. So, the best results that we see are with the patients that have great social networks and great social support. And when I discuss with the families in my clinic, I always remind them that if mom needs help or dad needs help, or the partner needs help, or anybody else that’s involved—like the friends—needs help, this is the best time to give it. There’s no better time than when this diagnosis comes, because this is the time of people’s maximum need.