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ASCO: You're listening to a podcast from Cancer.Net. This cancer information website is produced by the American Society of Clinical Oncology, known as ASCO, the world's leading professional organization for doctors that care for people with cancer.

In addition to physical treatment such as surgery, chemotherapy, and radiation, there is another important element to cancer care, psychosocial care. Psychosocial care refers to the support and service that address the emotional and social aspects of cancer. Combining psychosocial care with cancer treatment often leads to better physical outcomes for patients.

In today's podcast, Mattie Miracle Cancer Foundation co-founders Peter Brown and Vicki Sardi-Brown tell the story of their son Mattie's journey with cancer, and explain how it inspired them to advocate for the development of evidence-based psychosocial standards of care for children with cancer and their families. ASCO would like to thank Mr. Brown and Ms. Sardi-Brown for sharing their story.

Peter Brown: Hello. I'm Peter Brown. I'm the co-founder and CEO of the Mattie Miracle Cancer Foundation.

Vicki Sardi-Brown: And I'm Vicki Brown, the co-founder and the President of the Mattie Miracle Cancer Foundation.

Peter Brown: So thank you everyone. I think Vicki, I'd like to open up with a question for you to address, which is to ask you to tell us a little bit about Mattie and his journey and his battle with cancer.

Vicki Sardi-Brown: Sure. Well Mattie was our child, and he was our only child, and he was born a healthy and happy child. And I would have to say Mattie was probably my life's greatest teacher, and it's hard to summarize in just a few words a little bit about Mattie or who he was, but I will try to do my best. Mattie had many strengths. He had an incredible sense of humor, great observational skills, and he really seemed to understand how things worked at a very tender age of two. He always gave Peter and I a chuckle because he would find a screwdriver, and with the screwdriver he would disassemble and reassemble his hot wheel cars and all of his other toys. So at a very young age we always used to call him our little engineer. Mattie was vivacious, and he liked to have a good time, and he was pretty good at convincing others to take part in his antics. So Mattie was just fine, he was very healthy up until age six.

Then at age six he was enrolled in a summer camp in 2008. And after the first week of camp he complained of arm pain, and we acknowledged that, but we thought maybe it was due to the camp that he was enrolled in. But it was not until the second week of camp when Mattie truly complained of arm pain and that he couldn't lift his arm anymore. That brought us concern, so we took him to see his pediatrician, who fortunately took our concerns seriously and she ordered an x-ray that day. And so I took Mattie over to the hospital for his x-ray, and it was during that scan that we learned that Mattie had this enormous tumor in his right arm bone which looked indicative of osteosarcoma, or bone cancer. And unfortunately under multiple tests that Mattie endured, we learned that Mattie had four primary bone tumors, one in the right arm, the other in the left arm, one in the right femur, and one in his left radius in his wrist. So four permanent bone tumors is very unusual, and the diagnosis of multifocal synchronous osteosarcoma was also very unusual. So Mattie, 16 days after diagnosis, so it was very quick, he started his treatments, and his treatment involved 14 months of high dose chemotherapy, experimental immunotherapies, and of course one salvaging surgery to remove the tumors in his bones. And then of course, about 11 months into treatment, Mattie also developed tumors in his lungs, and so he needed a sternotomy to remove those tumors.

Vicki Sardi-Brown: And that's only kind of the medical aspects of Mattie's treatment. What also needs to be discussed are the psychological ramifications of the impact of his cancer treatment. And so from his surgeries and from the high dosage chemotherapy, Mattie became a child with many disabilities. After his second surgery, he could no longer walk, or run, or dress, or toilet himself, and of course, those kinds of independent aspects are very important to a 6-year-old. This profoundly changed his life and made him very upset, so much so that through the course of his treatment, Mattie was then diagnosed with clinical depression, anxiety, and medical traumatic stress. And on one final note, after his treatment, about six weeks off of chemotherapy, Mattie complained of continuous pain, and wasn't eating or drinking. And at that point he was scanned, and we learned that his cancer had spread to his lungs and his liver. At that point, conversations with the medical team turned from a curative intent to end of life care, which was pretty challenging.

Peter Brown: Thank you, Vicki, for that readout, and it underscores the next topic, which is psychosocial care and issues. And I know you addressed that in a couple of the points in describing Mattie's journey here, but maybe you could just take a couple minutes and just talk about moments during the 14 months of his treatment where it became very clear to us that really standards for psychosocial care of children with cancer were needed and necessary.

Vicki Sardi-Brown: Sure, and you jump in too, Peter, because there are things that I may not be seeing as well as you remember them to be from your perspective. But there were times, I would say, during Mattie's treatment where psychosocial concerns were really not addressed. They were not effectively addressed and they were not adequately addressed. And as such--

Peter Brown: So Vicki, give us some examples.

Vicki Sardi-Brown: Yeah, yeah. No, I'll give you an example because I feel because they weren't addressed well, it made the medical task a little more complicated. Like for example, you know Peter that Mattie came into his cancer battle with sensory integration issues, so he already had issues with sounds and noises and the textures of things, and that made doing scanning and so forth at the time of the diagnosis really challenging, because it was really needed for the psychosocial and medical teams to understand what kind of child Mattie was coming into the cancer battle to help them with the initial diagnosis phase. Now because they did not take the time to hear our concerns that Mattie had sensory integration issues and was truly frightened of going into an MRI or a CAT scan, they thought that he could do these things without support. And what happened is trying to do that, Mattie ended up becoming extremely frightened, extremely anxious with MRIs and CAT scans right from the first week of diagnosis, so much so that he could no longer do any scans of any kind or most medical procedures without having sedation. And of course that provides other complications, but I truly believe it was because the psychosocial aspects of care were not addressed right from the beginning, and it made future scans and procedures really challenging. So that's one example.

Peter Brown: Right, well those are very-- I remember those, all too many and many more, but it also traumatized us too. And so when things went well we managed but when things didn't go well, not only did it impact Mattie but it also impacted us quite significantly, which leads me to ask a question about psychosocial care. And I know there is a definitive definition - you know this stuff better than I do - about what is it. So maybe just take a minute and talk about what is psychosocial care, from a definitional standpoint.

Vicki Sardi-Brown: Sure, but before I answer that, I think what you brought up was very important about the fact that Mattie's diagnosis impacted both you and I. And I think that's really crucial because it is really challenging for parents to see their child not only going through a cancer treatment, but then getting profound mental health issues that arised from this treatment. And I think what becomes even more difficult for parents is when they're the ones who have to advocate and almost bring awareness to the mental health needs that their child is dealing with and that they're dealing with, and trying to get those services taken care of while also managing the medical care. So I want to mention that and I know we'll come back to that later.

Peter Brown: Sure. Let me give a go at the definition then. The Institute of Medicine from 2008 defines psychosocial care as services and interventions that enable patients, their families, and healthcare providers to optimize their physical health and to manage the psychosocial aspects of cancer in order to achieve better overall health and health outcomes. And I think that particular point is key. So in other words, by delivering these services and these interventions to optimize physical health, you also need to manage psychosocial aspects in order to achieve overall better health outcomes, meaning that if you want more effective cancer treatment, you have to deal with the mental health and the emotional well-being of the patients. But particularly with a childhood cancer diagnosis it really is a family diagnosis, meaning that it affects all the family members. So you have to include them in the care and treatment plan so that you can help to optimize overall health outcomes.

Vicki Sardi-Brown: Yeah, I think that absolutely defines what psychosocial care is. And I think in the 21st century, you also need to move into comprehensive care, which as you're saying, would include psychosocial care. We can no longer just look at cancer care as just some biomedical issue. It has to be biomedical plus psychological, and until those are merged together, I really don't think effective cancer care can be applied to children and families.

Peter Brown: Very well said, and again, there's a growing body of evidence research out there that shows, that has proof, that the provision of psychosocial care actually helps improve health outcomes and advances medical treatment. Dealing with pain symptoms, dealing with quality of life issues that, by the way, are prevalent during treatment but then also carry forward post-treatment, assuming there is a survivorship situation where the child is "cured" of the primary cancer threat. They can still be traumatized, and that trauma stays with them for a lifetime, and it can also traumatize the family as well. And these are all very natural things. We're all human beings. It's scary stuff. You're in a hospital, you're dealing with life and death issues, and it throws off the entire family dynamics. It really does. It's natural, it's going to happen, so it's a foredrawn conclusion. And there is proof out there that says as you deliver a cancer treatment that you also make a provision for psychosocial care because that's going to naturally happen. So I think this is a good segue, Vicki, to talk about the standards and what was recently accomplished, and more specifics around that. Do you want to speak to that?

Vicki Sardi-Brown: Yeah, sure, and we could speak about it together. But something you said really triggered this reaction, is you mentioning about how important psychosocial care is. And you and I talk a lot to people in the community about the importance of psychosocial care and advocating for it. And I think people obviously agree with us within the healthcare systems and certainly other parents, but then the question that always comes back to us is, "Why do we need to advocate for psychosocial care? Isn't it just already implemented? Isn't it already embedded within care?" And of course the answer to any of us who have experienced childhood cancer know that the answer is no, because there is no standard of psychosocial care right now in this country like there is medical care. That discrepancy is something that we at the Mattie Miracle Cancer Foundation wanted to address and change. And so therefore, the Foundation has been working with a core team of five psycho-oncologists, who are national well-known clinicians and researchers. And with their help, they helped us pull together a team of over 85 health care professionals from around the country, Canada, and the Netherlands, and they represent 44 cancer institutions in the country. And these 85 individuals helped to pioneer evidence-based standards of care. So it's a three-year long international project, which produced a comprehensive compilation of psychosocial standards to date that reviewed almost 1300 general articles, and as a result, produced 15 psychosocial standards of care that were recently published in a special supplemental edition of Pediatric Blood & Cancer. And basically, the importance of these standards, and remember these standards are based on evidence-based research as well as professional consensus, and they're historic because what they define is what children with cancer and their families must receive to effectively support their cancer journey from the diagnosis through survivorship or end of life and bereavement care.

So I want to just mention how important these standards are because it's not just psychosocial care provided to the child, but psychosocial care that's provided to the entire family system, and it also acknowledges that psychosocial issues do not end when the treatment ends. Psychosocial issues continue on into survivorship or end of life care and bereavement care. So the standards - if you should look at the online supplement, which the foundation funded the publication of these standards as well as provided open access to these standards for an indefinite period of time for the public - and what you will see is that there is one overview chapter that talks about the methodology, and who was involved in creating new standards, and then each subsequent chapter covers each of the standards of care. I don't know, Peter, if you'd like to say some more about what's covered perhaps.

Peter Brown: Sure. So I think it's important that we also talk about, this just wasn't some garage project. This is an incredible, rigorous, historic, very thorough, evidence-based exercise, which is important in this community because you can't just go necessarily with good ideas or best practices. You really need to go back to the evidence and the "proof." I would be negligent if I didn't mention that we've already had five nationwide professional organizations publicly endorse the standards, APHON, which is the Association of Pediatric Hematology/Oncology Nurses, the Society for Pediatric Psychology, which is the division of the American Psychological Association. We've had the Association for Pediatric Oncology Social Workers come out and publicly endorse it, the American Academy of Child and Adolescent Psychiatry has come out and endorsed it, the American Psychosocial Oncology Society has endorsed it, and we also have several other leading national organizations currently evaluating the standards, ASCO being one, the American Academy of Pediatrics being another, and several others looking to review it, check out the evidence, and then render their own conclusions about their efficacy and worthiness. But we're hopeful. And so the message is that the leaders in these areas of these professional organizations responsible for delivering these psychosocial services to children with cancer and their families are all standing up and saying, "We believe in these, we think these are standards," which actually, Vicki, I want to just talk a little bit about certain next steps and then finish up with maybe some guidance for parents.

So let me just keep running for a second. In terms of where we go from here, what we just talked about is really just a phase one, which is let's get the evidence, let's get the data, let's get the standards defined. We're now moving into phase two, which is all about implementation. Because standards are great, but unless applied, they're useless. And so efforts now are underway to look at regulatory and legislative angles, to mandate, to legislate, to implement and require that these standards get applied. But to do so from a governmental or legislative perspective, you really have to have a delivery model. And not all sites - i.e. hospitals - that deliver cancer care are created equal. And so, the question now that we're exploring is how do you take a small, or a medium, or a large site and appropriately resource it from the facilities, from a profession, from a services perspective to apply these standards. There's a lot of additional research that's left to be done, not only with the interventions - the evidence-based interventions that we have today - but also to evolve those, to make them richer, and more effective. But also to target areas that are underserved or untouched so far, in terms of how do you apply these standards, and what really should be the standards and practices. So those efforts are underway as well. But we're also back to the list of associations, a minute ago, that have come out and endorsed them. Actively working with those associations to incorporate these standards into both their educational curriculums, so that they take that back within their profession as you need to be trained up, this is part of your responsibility as a professional in a certain discipline to deliver upon, but also to look at accreditation standards too, and embed those into requiring sites that do deliver care that they can demonstrate evidence and be held accountable for delivering those standards. So those are really efforts that are underway. It's going to be a multi-year journey. One of the things we're asking all these associations to do is to go look those up and take a look at them because they will be coming into their purview very shortly. So that's, I think, a pretty good summary of what we're forward-looking in terms of statements and next steps, but I think it'd be nice to finish up with maybe just some points for parents and patient advocates for their own psychosocial care while they're undergoing treatment. How can they really advocate for themselves and their child as they're going through this? So maybe, Vicki, you can address that.

Vicki Sardi-Brown: Sure. And it's hard. As you know, Peter, it is hard sometimes to advocate for yourself and your child at any point during the cancer journey because we're stressed out. Families are stressed out, there's just sheer exhaustion, and you're balancing a lot, perhaps with other family members as well. And so it becomes really challenging to know how to get the support you need. But I think one thing that we need to keep in mind, as families or parents of children with cancer, is that psychosocial issues do result from childhood cancer care, and they're very natural and it's very typical. And we just need to, I think, advocate and promote the fact that there's nothing abnormal if this happens. It is a very natural process. Psychosocial issues arise. How could it not when you're dealing with life and death situations? So first we just need to take away the myths and destigmatize the fact that mental health issues can arise from childhood cancer, and empower parents to talk about them first of all. And also to allow them the wherewithal to advocate for access to services for themselves and for their child. And I think by having standards in place, it will at least help them that when they are advocating for their needs, that there will be people on site who are being reimbursed and are who are trained to help families with these issues. So I think one is about destigmatizing psychosocial issues and mental health issues that arise. The other thing is that it's okay to talk about it, and it's okay to advocate for getting access to these services. And I think the other thing that you and I learned quite well through Mattie's battle is that no one really knew Mattie better than you and I. And I would say that's true of any parent. You know your child better than anybody in the healthcare system, and therefore it is a very important to take an active role in the overall healthcare teams. And research does show that when healthcare providers include parents, the care tends to go better. And so I think that's the part that I think is important for parents to know is that you're not an obstacle to the care. You're actually making the care go more effectively. And no one can advocate for your child better than you and know what kind of services that you need.

Peter Brown: So my parting thought there is, or closing thought is remember - and I know we joke about this with our tag line but it's so true - that it's not just about the medicine, and that while there is a medical standard of care, only now is there a psychosocial standard of care, and we're looking forward to getting it implemented. Open up reimbursement paths, because it's just as important in that whenever you talk about childhood cancer, you need to make sure that your message includes not just research on better medical treatments and cures, but also on psychosocial support as well.

Vicki Sardi-Brown: Absolutely. Right, because medical treatment impacts every aspect of the child's day-to-day living as well as the family. And I think once these things get embraced, and they get embraced together, meaning medical care and psychosocial care, I think it's going to have a profound impact on the effectiveness of care and how people manage the care. I think the coping of the care will be so much better once we truly embrace comprehensive care. We talk about it, but actually implementing it I think will make a huge difference on families through diagnosis and throughout the cancer journey.

ASCO: Thank you Mr. Brown and Ms. Sardi-Brown. For more expert interviews and stories from people living with cancer, visit the Cancer.Net Blog at www.cancer.net/blog.

Cancer.Net is supported by the Conquer Cancer Foundation, which is working to create a world free from the fear of cancer by funding breakthrough research, sharing knowledge with physicians and patients worldwide, and supporting initiatives to ensure that all people have access to high quality cancer care. Thank you for listening to this Cancer.Net podcast.

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