Episode 21 Transcript: Remisson: The video game that rocks kids with cancer.
Host: Mignon Fogarty
Transcript: This episode originally aired April 27, 2006
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INTRODUCTION
Mignon: I'm here this week with Dr. Pamela Kato, who is a scientist at a non-profit organization called HopeLab.
Now, HopeLab has created really exciting computer game for kids with cancer called Remission. Hope Lab was formed by Pam Omidyar, who is the wife of eBay founder Pierre Omidyar. Now, most of you probably don't know that Pam Omidyar was a biology researcher long before eBay was even formed, and Pam originally thought of the idea for this computer game before it even became a possibility when she was working with cancer cells in an immunology lab.
What's amazing about this game is not only that it got made, but also that HopeLab has done studies to prove that it has a positive benefit for patients. And we're here again today with Dr. Pamela Kato, also one of the founders of HopeLab, and is the principal investigator of the Remission outcomes study.
Thanks for being with us today Dr. Kato.
Kato: Thank you Mignon.
WHAT DOES THE GAME DO?
Mignon: Sure. This is really an exciting game. Can you provide us with a little bit of background about what it is, and how it works?
Kato: Sure, well first of all like you said, it's the first game of its kind, and we combined a .scientifically robust development process with exciting game play and a rigorous research study to help young people with cancer. You go inside the body, it's actually a third-person shooter and you attack enemies inside the body, especially cancer cells and infections with traditional treatments like antibiotics and chemotherapy, and you help patients get through the process.
Mignon: So, now when I looked through your web site I saw that there are different cancers and missions that kids can play in the game.
Kato: Yes, that's correct. They're in different patients and they all represent cancers that are common among adolescents with cancer, for example like brain tumors, acute lymphocytic leukemia. So you go through and we tried to address issues that were common to many cancer patients, not just these specific illnesses, so kind of general issues that you face when you're getting chemotherapy.
HOW DID THEY MAKE THE GAME?
Mignon: Hmm. How long has the game been in development?
Kato: Well, the game in its form now took about two and a half years to make, which is a little bit long, but it wasn't an easy process to make cancer something fun.
Mignon: Yeah, I can imagine.
Kato: So it took a lot of collaboration, working to put facts and scientific processes in the fame, but we're really pleased with how it came out.
Mignon: Great. And so what is it meant to accomplish...the game for the cancer patients?
Kato: Well, for them, I have to think part of the accomplishment is that the patients had input into the game, and they took it very seriously and they really wanted to make it good. So when they see it, it's a game about them and it really touches their life and I was really proud of the fact that we did some focus groups and some kids were reading the history screens of some of the patients, and they'd said “Oh my gosh, that';s me!” They were kind of surprised that we were addressing issues not just about fighting cancer, but some side effects like constipation and nausea and things like that, that they didn't think other people faced, but through the game they could see that they aren't alone in their struggle.
Mignon: So how to do you work those things into a computer game?
Kato: Well, it's very difficult, but you can think of one of the ways is that a great way for patients to cope with problems in general is through humor. So for nausea we have a surfing mission where they surf a wave of nausea, and try to get the patient to eat crackers to calm their stomach and try to get them to do relaxation exercises or to take their anti nausea medication, so it's kind of fun. We have a funky main character, Roxxy, they you work with and control and she tries to get the patient to take their medications. So, it takes a lot of out of the box thinking and creativity.
WERE THERE CONCERNS ABOUT THE GAME?
Mignon: I'll say! So I went to your web site and I have to say the graphics look amazing for this game. I mean, you clearly worked with some really great game designers in addition to putting in the science. So one thing I noticed is that the cancer cells looked really scary. And I was wondering if there was a concern that the game might freak kids out. That they might have nightmares about the cells looking so mean or something like that.
Kato: Yes. Absolutely there was concern, and I have to say the concern was largely from the medical side. I personally was very concerned about it because what had happened was the video game designers wanted to make a really challenging game and made all these scary characters for the cancer cells,a and they didn't look like cancer cells, and I was like, “The cancer cells have to look scientifically real.”
So we had this discussion internally about what we should do. So part of our process was to ask the kids what they want. So we brought them in and we showed them scientifically, very nice scientifically portrayed cancer cells and these really scary monstrous looking cells, and overwhelmingly they chose the scary ones. And I was like, “Are you sure?”And I would even say, “Aren't you afraid of them scaring people?” And they were like, “Well no, maybe if it were little kids who didn't understand, but they aren't going to be playing this game because it is for teenagers.”
And they also said cancer is a scary disease, and it's mean and horrible and challenging, and you have to fight it, and we're more motivated to fight something in a game if it is scary. And I have to tell you, they made the decision and they talked me into it, because I was certainly one of the people who was very concerned. But it's a game for the kids, not for me.
Mignon: Wow. So then, do you always win the game? Since most video games end in death, I can imagine that would be a really difficult issue for kids with cancer too. So how does the game actually end?
Kato: Well, basically, like in most games like you said if you don't get enough points they say OK, you're dead, and you're thrown out of the mission. We definitely were concerned about that issue, and we talked to the kids. And they said we want to be positive and we don't want the game to address any issues of death. And that also went against some of my psychological background, getting them to face reality and all that, but overwhelmingly they said absolutely no we don't want it in there.
The kids said that this is supposed to be distracting, and we want it to be fun. So what we did instead, if you don't do so well in a mission, Roxxy the main character kind of powers down and you get taken out of the body and you get another chance to play again.
And it's not like you win all the time. This game is a lot like fighting cancer. You face challenges and you have to keep on trying and trying, and they you get better and hopefully you win.
WHERE DO KIDS PLAY THE GAME?
Mignon: It sounds great. So when the kids are playing the game, are they playing it at home on their computers, or is it a Playstation game, or do they play in the hospital, how does that work?
Kato: Well when we were doing the study what we did was give everyone a MiniPC to play on with a Sony Playstation controller, so they were all playing with the same technology that was a tiny shuttle PC that they could take with them. They could take it home or they could take it to the hospital.
Most of the kids these days are treated at home and they take oral chemotherapy, so most of them are playing at home, but if they had to be hospitalize for infections, they would also take their shuttle PC with to the hospital and hook it up there and play it. And now the game is available to kids with cancer and we send them a copy of the game so they can play it on any of their PCs at home or the hospital, wherever they want to take the CD with them.
DESIGNING A CLINICAL STUDY FOR A COMPUTER GAME
Mignon: Oh, that's great. So now, one of the exciting things you did guys did too was to do a study to see what effect the game was having on the kids, right?
Kato: That's exactly right, because we looked around at other non-profits and people who really want to do something nice for kids, and we were wanting to take it to another level. We know that they would probably enjoy the game, and it would be a really nice thing to do, but we really wanted to make sure that this game makes a difference. And so we did a research study and a really rigorous one, and we're going to kind of test it like you would test a drug that you would give these kids, you know by a randomized controlled trials with rigorous scientific methods. So, by most standards of behavioral research this is a very, very rigorous study.
Mignon: So did the control group play a different computer game?
Kato: Actually, the way it was set up is that we gave the control kids a commercially available video game that was called Indiana Jones, I believe it is Indiana Jones in the Emperors Tomb.
So they played that, and the treatment group were also given that game, plus the Remission game. And that was because we knew from past research that video games in themselves commercially have a positive effect, they distract kids, they make them feel better, and they help them with pain tolerance, so we wanted to be very rigorous and see above and beyond the effects that any normal video game would give a kid, beneficially, what does remission do on top of that.
Mignon: So what did you find out?
THE GAME HAS MEASUREABLE BENEFITS
Kato: We found that Re-mission actually works. So we found increases in kids self-efficacy to manage their side effects of cancer and the treatment itself.
Mignon: So, what is self-efficacy?
Kato: Self-efficacy is basically, it's a belief in your own ability to overcome challenges in certain situations. It's a construct, based on a theory by Al Bandura at Stanford University called social learning theory, and it's been applied in lots of different areas of health psychology.
For example, like in exercise and phobias, and it says there are just certain conditions where if you believe you can do something you tend to persist at the task longer. For example, if you are afraid of dogs and you watch someone else who is even smaller than you and more nervous kind of petting a dog when they're scared, then you think maybe I could do that too.
Mignon: Oh, OK. So do you measure that by a questionnaire or something like that?
Kato: Yes. So we took, the way the construct is based we used standard guidelines in developing our scale, and gave the questionnaire to both the treatment and control group, and looked at the differences over time, and it was quite striking. So it's basically that we empowered them. And the important this is not just that we changed a belief, but self-efficacy as a construct has been shown to be highly correlated with actual health behaviors.
Mignon: Wow. So did you find outcomes in relationship to health behaviors as well then?
Kato: Well, actually yes. So, in addition to self-efficacy, we also found that it has some effects on their quality of life, and also their knowledge of cancer through the game. But in terms of their behaviors, we found that, number one, we took assays of their blood so we drew blood from a subgroup of kids who were taking oral chemotherapy called 6MP and we looked at metabolites in their blood over time, and we found that in the treatment group the kids were maintaining higher levels of chemotherapy in their blood than the control group.
Mignon: That's amazing!
Kato: Yeah, so we were very happy with that. It was an intriguing result.
HOW COULD A GAME IMPROVE HEALTH?
Mignon: Do you have any idea what the mechanism is behind that?
Kato: So, in theory, the way we designed the game was if you might think about operational learning, when I do something if it is followed by a reward, I'm going to tend to do it a little bit more. these kids, when they take their oral chemotherapy, their immediate reward is nausea, pain, vomiting, and they lose their hair. So, what's really going to make them want to take that? When they get sick and can't hang out with their friends.
But with the game, we take them inside the body and we say, OK, when you take your chemotherapy -- so Roxxy shoots it and kills the cancer cells -- this is what happens, so you kind of get a positive reinforcement vicariously within the game when the chemotherapy is taken. So it's almost like vicarious learning. So, we don't know if that's directly what related to this outcome, but overall we've had kids tell us that they kind of got some insight into the importance of taking their medications through playing this game.
Mignon: So are you saying that they have higher levels of chemotherapy in their blood because they actually take their medication more regularly than other kids?
Kato: Yes, and that's basically what this test gets at. So whether or not they say they are taking it, by looking at their blood you can get a good idea if they are taking the medication or not.
WILL THERE BE LONG TERM FOLLOW UP?
Mignon: I see. OK. So are you going to follow up with the kids in the trial to see if they have longer survival or something like that?
Kato: Well, we would love to do that, but as you probably already know that to do a really good job of looking at survival, we'd have to follow them for years and years, and we'd also have to make sure the control group didn't have access to the game.
Mignon: Oh. Right.
Kato: So, we wanted to get the game out to everyone, so what we did in this study is since we knew that we can't wait this long. If we waited 5 or 10 years the technology would be obsolete, and then no one would be able to play the game anyway. So what we did is looked at measures like through these blood assays, and through these other psychological questionnaires, and also looked at how much they took their antibiotics. And those are all correlated in the literature with health outcomes. So that was the way that we addressed this issue.
Mignon: That's great. And so the kids worked with you to develop the game. So have you had any feedback from their parents? What did their families think of the game?
IMPROVING COMMUNICATION
Kato: Because we contracted with sites to conduct the study, I can't have direct access to the patients and their families, but from what I've heard some families are talking about how the whole family played the game together, and it was the first time the patient ever talked openly about their cancer.
This is just wonderful, and was something that we expected to happen based on past research that we looked at with games with other chronic illnesses, that is does tend to increase the amount that kids talk about their illness with their parents and also their medical care providers. And that's something that is just very important for this population of teen agers and young adults with cancer.
Mignon: Yeah, I imagine it is especially hard for kids with cancer, you know it's rare and they're young, and...
Kato: Yeah, absolutely. And if you think about how it was when you were an adolescent and how difficult it was, and how much you wanted to fit in, and how self conscious you were. These kids, they face so much, and they're so brave and they have to go through this really traumatic and difficult experience. It's actually very inspiring to see them.
BREAKING DOWN BARRIERS FOR STUDYING ADOLESCENTS WITH CANCER
Mignon: Yeah, and you were telling me earlier about this study being one of the first in adolescents with cancer?
Kato: Yeah. So surprising, despite the fact that we're learning more and more that cancer incidence is increasing in adolescents with cancer, and they haven't seen the health benefits that younger and older patients have seen with these emerging chemotherapies and new drugs, their survival is just barely creeping up and is almost nonexistent in some age ranges. And despite that there had never been a therapeutic trial that has focused exclusively on adolescents and young adults with cancer. Ours is the first.
And I have to say, I was at a conference and they were asking me to come up and put our study up on this historical timeline for adolescents and young adults. And I was like “Why? It's a video game intervention!” and they said no one's ever done a therapeutic trial with this population before, and I was like you guys should be embarrassed.
Mignon: Yeah, that's amazing.
Kato: But we're happy to break the barrier and show people that it's possible to recruit them and to study them further and do something about them. And they can be engaged in research.
WHAT'S NEXT FOR HOPELAB?
Mignon: Right. So you've just launched remission, and that's a big milestone for you guys at HopeLab. So, what's i the future for your organization? What's next for HopeLab?
Kato: HopeLab is focusing on other chronic illnesses in addition to cancer. So for example, sickle cell, major depressive disorder, autism and obesity, looking for some innovative interventions for those illnesses.
Mignon: So is it going to be games again, or will there be other things that you are doing as well.
Kato: Well, of course, HopeLab has developed some expertise in games, so that's an option for them, but HopeLab is not limited just to looking at games, we're looking for innovative solutions. So the field is kind of open. We're willing to try anything different and think outside the box as long as it looks like it is promising and it is going to work.
HOW TO GET THE GAME
Mignon: Why don't you tell people how they can get Remission, because it looks like a great game.
Kato: Remission available now for kids with cancer and they can go to the website http://www.re-mission.net, and they can order a copy and patients with cancer can do that right now, and then on May 1st it will be available to the general public, so they just have to go to the website and order it.
Mignon: So is it mailed out, or do they download it.
Kato: It's actually mailed out. I think it would take a really long time to download it. It's a full scale game, it's not a beta version or something like that. So, it's been in the news that you can go there and download it, and people have been disappointed, but I think they would probably be more disappointed if they had to download it.
FORUMS AT THE WEBSITE
Mignon: And the other thing I've noticed on your website is that it's not just the game, that there are also forums where kids with cancer can chat about whatever they want to, right?
Kato: Right. The game kind of brings kids to the web site, and the website is now a community for kids with cancer, and we really want to see how they can drive this web site, and see what they are interested in. But we want a place for them to be able to get together and have a community, and be able to express themselves.
Mignon: Great! Well again, that website again is http://www.re-mission.net, and it looks like a great game. So congratulations and thanks again for being with us today Dr. Kato.
