[0:00]Dr. Sunny Mayes, PhD, is an associate professor who joined the Department of Pediatrics in January of 2020. She's a pediatric psychologist, who's board certified in clinical child and adolescent psychology. She completed her undergraduate work at the University of Oklahoma, graduate training in clinical child psychology at the University of Kansas. Clinical internship at the Monroe Meyer Institute at the University of Nebraska Medical Center, and post-doctoral fellowship in pediatric psychology at the University of Oklahoma Health Sciences Center. Dr. Mayes was a faculty member at the University of Oklahoma from 2007 to 2019, and joined UFL as the Director of Psychosocial Services for the Division of Pediatric Hematology and Oncology and Director of Research for the Division of Child and Adolescent Psychiatry and Psychology. Dr. Mayes is married and has three lovely daughters. Spencer Moorman is a graduate of Vanderbilt University and the Kent School of Social Works psychosocial oncology specialization. Joined our outpatient team as our first full-time clinical social worker in 2015. She's currently the project and transition coordinator for two of our federally funded sickle cell projects for Picori and Hursa. A key liaison for Raise Red and other community-based organization and co-creator of the Patient Pal program. In caring for patients on the front lines with all Hemark diagnosis and helping to establish a foundation for our psychosocial program, her passion for standard of care implementation, propelled several awarded grants for additional social work supports. And most recently, a state funded project which you will hear about today. The first state supported implementation project of its kind for all psychosocial standards of care. Spencer is the mother of three children, a native Floridian, lover of the water and multi-time national tennis champion. Please join me in extending a warm welcome to Dr. Mayes and Spencer.
[2:15]Thank you for that introduction, Dr. Raj.
[2:24]Excellent. Okay. I'm not going to spend a lot of time talking about our learning objectives, but basically, we want to give you an introduction to the psychosocial standards of care for pediatric oncology and to discuss how important it is to have these guidelines for psychosocial services.
[2:47]All right. I'm going to let Spencer talk about the changing escape of cancer survivorship. As Dr. Raj just touched upon in his introduction, over the last several decades, the landscape of pediatric cancer treatment has been tasked to evolve from one strictly focused on the survival of the body to one that also prioritizes the emotional, the mental, the psychological wellness of the child and their family. Thankfully, advances in pediatric cancer treatment over the past 50 years have dramatically improved survival rates. Once considered almost uniformly fatal, pediatric cancer's overall survival rates now approach 85%. Formally, little psychosocial support existed for the child with cancer, other than that provided by the hospital staff, nurses, family. The prospect for long-term survival was far remote. The plans for the future such as social relationships, late effects of treatments, and emotional adjustment were simply abandoned. However, the survival rate for children with cancer has improved, so has the need for and quality of psychosocial care. Largely because of hope for a cure and hope for an actual future for the child.
[4:14]Multiple publications have in fact yielded the game-changing impacts psychosocial care can have in the life and the overall outcomes of a child impacted by pediatric cancer. Listed here are some of the reasons as to why multi-layered support of the patient should not be a luxury, but actually a critical necessity. Disease-related symptoms and adverse effects of treatment are better managed with psychosocial services and support. Depression related to pediatric cancer, along with other psychosocial concerns, can affect treatment adherence. It impairs cognition, weakens motivation to do anything, much less face cancer treatment, and it also decreases coping abilities of the child and the family. The Institute of Medicine reported in 2008 that optimal cancer care does include the provision of psychosocial services.
[5:15]And psychosocial well-being influenced the physical functioning and treatment outcomes among children with cancer. The body and the mind are indeed connected.
[5:34]One family through their tragedy has changed the pediatric cancer treatment backdrop. Peter and Vicky Brown, parents of Maddie, Matthew Brown, who was born in 2002, knew all too well how much psychosocial support could have made a difference in their lives, even in the midst their child's unimaginable unimaginable prognosis. At six years old, Maddie, their only child, was diagnosed with osteosarcoma, bone cancer, in July of 2008. He had four tumor sites in his right arm, his left arm, his right leg and his left wrist. Maddie had two limb salvaging surgeries, a sternotomy, 10 months of high dosage chemotherapy and radiation. Living in a hospital for months on end, Maddie grew anxious and depressed. He feared CT scans and dreaded the sight of another group of white coated doctors marching down the hall to deliver what invariably was bad news. His parents frantically trying to save him, struggled with sleepless nights and mounting financial worries. After being diagnosed with clinical depression, anxiety, and medical traumatic stress, Maddie passed away in the arms of his mom and dad, Vicky and Peter, on September 8th of 2009. Soon after his passing, the Browns knew they had to do something. While other grieving parents became entrenched with finding medical cures, the Browns were drawn to improving lives in a different way, through improving comprehensive psychosocial services for children and their families. The Browns recognized that the value of psychological, emotional and social support was just as important as the medical treatment. For them, it was obvious that it was not just about the medicine. This thing became the motto for a game-changing foundation, the Maddie Miracle Cancer Foundation, named in honor of their boy. Maddie and his legacy have already changed the course of care and outcomes for countless children faced with cancer, not just here in the US, but also worldwide.
[8:03]It's difficult to believe that the Maddie Miracle Foundation began the fight for psychosocial care and childhood cancer only 10 years ago. They lobbied in Washington to make this important support a part of the legislative dialogue, yet at every turn, they continued to hear the same challenging question. Where is the evidence? Where is the evidence? They wanted support for psychosocial care, yet every legislator wanted to know about the evidence. Without standardized evidence, they knew the needle would not be moved, and so they made it their mission to get standards of care established. Peter Brown said, we can't do undo history, but what we can do is try to help those who are going through this now or going to go through this in the future. Although Maddie's life still would have not been saved, the quality of the time he had left could have been saved.
[9:05]So, with the support for Maddie Miracle Cancer Foundation, a three-year long international project involving 85 health care professionals from 44 institutions across the US, Canada and the Netherlands was launched to develop evidence-based psychosocial standards of care for children with cancer and their families. It was completed on December 29, 2015. The standards were published in a dedicated supplement of pediatric blood and cancer, as you can see on the bottom right corner. It is the largest and most comprehensive compulation of psychosocial standards to date, in which 1217 journal articles were reviewed and appraised for rigor. These historic evidence-based standards define what children with cancer and their families must receive to effectively support their psychosocial needs from the time of diagnosis, throughout survivorship, or end of life and bereavement care.
[10:04]And with that, here is Dr. Sunnymayes, a standards of care champion to outline the guidelines and the legacy of Maddie Brown. Thank you, Spencer.
[10:21]These are the 15 psychosocial standards of care for pediatric oncology. Um, I'm going to spend more time kind of going over each of the standards in the following slides, but one thing that I want to point out at the beginning is that all of these standards, well, they start at diagnosis. And once a patient is diagnosed, we, we need to kind of start implementing these standards, but they never stop. So the standards will go all the way through survivorship into bereavement. So, once a family is has a pediatric cancer diagnosis, we are trying to support them in these ways. Um, standard number one is for psychosocial assessment. We know that families are at risk. We know this is a very difficult situation to be going through, so, um, we need to make some standardized and systematic assessments of how they're coping psychosocially in order to better meet those needs. Um, this graphic that I'm showing is from Ann Kazak's research, and this is based on the Pediatric Psychosocial Preventive Health model. So, Dr. Kazak came up with one of the main, um, screening tools that we use for the psychosocial assessment. Um, it's called the Psychosocial Assessment Tool, and we refer to that as the Pat. And it is largely implemented in most pediatric cancer centers, and this is the one that we use here at Norton. Now, the way that this instrument works, it's it's very easy to fill out. The family just kind of indicate who lives in the home, what kind of stressors they're experiencing, whether those are financial, transportation related, um, presence of other psychosocial functioning difficulties of people who live in the home, and the family's perceptions about the cancer diagnosis. Including positive perceptions, like this is something that will bring our family closer together, and negative perceptions, such as, um, this is like a death sentence. So, these instruments are administered to families generally at the beginning of treatment. And what Dr. Kazak's research has found is that families generally have a pattern of responses and are tiered according to this model. So, at the bottom is universal risk. So, these are families that have some level of elevated distress, which is exactly what you would expect for families with a pediatric cancer diagnosis. But they're doing pretty well overall. They're able to cope and do what they need to do, and they demonstrate very good resilience. And honestly, most families fall into this category. The targeted category is for families who have a few more stressors going on than just this event and maybe aren't coping as well and may need some specific support to help them get through. And then at the top of the triangle, um, where most of the team members may spend a lot of their time is with the clinical category, where families are experiencing significant distress and need a lot of help. So, being able to provide this assessment kind of helps us determine what level the families need, which helps us to allocate our resources more appropriately. Um, standard number two is neuropsychological outcomes. We are doing a lot to these kids to keep them alive, and unfortunately, some of those things that we are doing will have some neurocognitive effects. So, particularly for children who receive, um, CNS directed therapy, so obviously this includes all the neuro oncology patients, anyone with a brain tumor, um, as well as the leukemia patients who are also often receiving intrapil chemotherapy administration. Um, as well as the patients who receive stem cell transplantation and receive total body radiation, all of those treatments when they affect the central nervous system are associated with a risk for neurocognitive difficulties. Um, I will point out too, um, that particularly within our patient population, where we have an increased risk of brain tumors, and also leukemia is one of the main things that we see. So those two populations comprise the vast majority of our patients. So we will have a lot of concerns about neuro psychological outcomes.
[15:11]Um, psychosocial follow-up in survivorship. Um, we want to make sure that we are attempt to the needs of our patients throughout the course of survivorship. They are risk for a lot of negative outcomes, whether those be adverse educational, vocational progress, um, difficulty maintaining social relationships, um, having emotional distress associated with the treatment, as well as engaging in basically almost every form of high-risk behavior. They are at risk for those things. So, we see greater instances of substance abuse and, um, unsafe sexual practices and, um, all of the risky things that we don't want our children and young adults to be doing. So, family should receive information about these risks and receive regular follow-up and and intervention to address those outcomes. Um, psychosocial intervention and therapeutic support. Um, so obviously this is a lot of what I do. Um, and so youth with cancer and their families, we want to be there to support them through this experience. Um, we know that they're at risk for increased distress, and we want to be there to kind of help them develop the coping skills that they need to get through this, and make sure that they're doing well. I will say, you know, going back to the model, most kids do pretty well. And it's amazing their resilience, but there is again, a subset of children and families who experience a lot of significant adjustment difficulties, and we need to be there to address those concerns, and we need to do that in evidence-based and appropriate ways. Um, and this slide, which I'm sorry, is a little bit blurry. Um, but I think that this is a really good graphic about both the resiliency of children. So, this graph on the left is variability in child anxiety and depression, and the graph on the right is variability in parent and caregiver levels of depression. So, as you can see, the kids are generally doing a lot better than their parents, but, um, at the same time, their scores are all over the place. So, we need to make sure that we're doing assessments and interventions to be able to meet families where they are at and provide those services appropriately.
[18:09]Um, we are all in the medical field, and we know how expensive medical processes and procedures are. Um, going through pediatric cancer is very expensive, and a lot of families may have difficulty with high copays, um, just a lot of out of pocket expenses, um, in addition to the medical expenses, families may be unable to keep or maintain full-time employment.
[18:50]So, up to 94% of families may be affected with their employment, either by having to to take some leave time, downgrading to part-time or sometimes not even being able to keep their job.
[19:15]So, um, obviously financial stressors are a huge effect on families, and parents, this is generally recorded their second top stressor. So, we want to make sure that we are assessing and asking about these things and able to provide resources and services whenever we can. Um, in addition to the patients, um, we are asked to provide psychosocial care for the parents. Um, for parents, again, most parents are pretty resilient and do well, but across numerous research studies, there has been a significant chunk of about 25 to 30% of parents who experience more significant distress. And we need to make sure that we are identifying those parents and providing services appropriately. And as we know, too, parent distress has a significant effect on the child functioning, and we want to make sure that we are doing what we can to support families in that experience.
[20:25]Um, Kazak's work also, um, she did some follow-up studies, and I know a lot of studies are a lot of sites are implementing the Pat at the beginning of treatment. But with this study, they kind of took a longitudinal approach, and they administered at the beginning of treatment and a time two, which I believe was six or nine months into treatment. But basically, they found a very consistent pattern. So, we're still seeing the bulk of families in the universal risk range, um, as a as a chunk of families in the targeted range and about the same amount of families in the clinical range. So, it's important to initially assess and to also reassess. And this slide talks about, um, the movement among the different levels. So, when you're when you're initially at the universal risk category, a lot of families remain at that level. That's 80%. That's that's a significant chunk, but 17% moved up to targeted, and a few of them moved up all the way to the top of the pyramid to the clinical risk.
[21:49]Um, within the clinical risk group, 40%, which is a pretty big chunk, remained stably at high risk. Um, about half of them decreased to the targeted range, and then 13% went all the way down to the universal risk range. So, this study really highlights the importance of reassessment and making sure that we know where families are down the road. Because we know kind of the pattern and the distribution of risk generally remains pretty stable, but families will move throughout treatment and different experiences, and we want to make sure that we're able to meet them where they are.
[22:33]Um, it's very important to provide a lot of anticipatory guidance and education for the families. They need to know what's going to happen, and we do, as a whole medical team, there's a lot of this, a lot of the treatment consents go into this in great detail. I know Francis, our nurse navigator, spends a lot of time teaching families like how to take their medicine and, and what things are going to look like and how treatment should go. So, um, this information is very critical to help families feel comfortable and, um, I think we all know from this past year that it's really hard to go forward and not know what's going to happen. And we want to provide the families as much guidance as we can. That being said, it's also hard to take in all this information when you are really distressed, particularly at the beginning of treatment and if there are changes in the disease status, like if there's a disease progression. So, we want to make sure that that information may need to be repeated and, um, we want to make sure that families are are fully understanding what we're trying to say. We also want to make sure that families are adequately prepared for procedures. Excuse me, particularly medical procedures, um, surgeries, um, anything coming up. We want to make sure that the family kind of has an idea of what to expect, as well as the child having an idea of what to expect in developmentally appropriate terms. And this picture is our wonderful child life specialist Taran. And I know she does a lot of this on the front end, um, really helping the the kids to understand what's going to happen with surgeries and what like going for an MRI procedure might look like. So, um, it helps those procedures to be less scary for the kids, and it helps the families to kind of feel better about what's happening. Um, having pediatric cancer, um, is a very socially isolating experience. So we want to do as much as we can to help facilitate social interactions among our patients. Um, there a lot of times out of school, um, a lot of times they're not able to hang out with their friends. They were doing this quarantine thing way before we were, and sometimes if their blood counts are too low, they need to kind of be away from other people because they don't want to risk getting an infection. So, social interaction whenever it's safe and can happen, is something that we need to foster among our patients. Um, and I know Brett, our music therapist, does an amazing job of psychosocial group among our patients, um, even though that's posing some interesting logistical challenges during the pandemic. But also camps are a great way to provide social interactions among the patients. So, it's important to consider for centers. Um, and in addition to the patients and the parents, we want to make sure that we're adequately psychosocially supporting the siblings. Um, and this is particularly worrisome if they are not able to come to the treatment center a lot with their patients, which is always the case right now because we have limits on who can be here. But, um, a lot of times siblings are being handed off to friends or other family members. Um, a lot of times all of the attention and focus on conversations is based on the child with cancer. Sometimes siblings have to miss out on enjoyable activities or maybe like no one's available to take them to baseball practice, and they're no longer able to keep up with those things. So, we want to make sure that we're there to support siblings and, um, give the family support in that direction as well. Um, it's hard to maintain your academics whenever you are going through cancer treatment. Um, a lot of our patients may be out of school for prolonged periods of time. Some of our patients may have difficulty keeping up, just somewhat due to distress, somewhat due to neurocognitive concerns. But we want to make sure that we are supporting them as best we can to maintain school, as much as we can, keep the kids learning, as much as we can, and kind of keep that attitude going.
[27:50]And here, too, is where the neuropsychological evaluation is so important, because a lot of the difficulties that they experience are a little bit more on the subtle side. And so it's easy to kind of chalk those up to, um, lack of motivation or not trying or not putting your work in, where actually, they may be starting to experience some difficulties, and we need to make sure that they're receiving appropriate accommodations and not becoming frustrated.
[28:21]Um, medication adherence is huge among our patients, just because it's cancer, doesn't mean they always take their medicine. Um, so we need to address adherence routinely and monitor it throughout treatment. So empirical research documents prevalent and significant difficulties with adherence to medication regimes. Self and parent report assessments of adherence should be obtained routinely using standardized language and specified time frames. Developmentally appropriate education should be provided to families with any regimen change. Guidance should discuss common barriers, previous experiences with meds, and strategies to improve adherence. Adherence assessments, education, and anticipatory guidance should be documented to address barriers for implementing these consistent practices into medical care. We know there are a number of risk factors for poor medication adherence, and a lot of our cancer treatment protocols hit every single one of them. Um, the medications that we're giving cause negative side effects. They don't taste good. They may involve really big pills that are difficult to swallow.
[29:50]Um, they they have really complicated regimens. Um, the families may be taking different amounts of the medication on different days of the week, and they may and that may change from one week to the next week, depending on their counts. And some medicines they only take a few days a week. So, every single thing that makes medication administration complicated is going on with these patients. And it's important to make sure that we're assessing that. It's important to make sure that we're assessing that in a helpful and systematic way. Um, palliative care is very important for quality of life for quality of life. Like we want to make sure that we're doing everything that we can to help decrease family stress and suffering. Um, we want to introduce palliative care early. We want to give that extra layer of support in whenever we can, like, so particularly for families who may have a poor prognosis, or who are having significant difficulties with pain. We want to make sure that they are introduced to that team sooner rather than later, because that's an extra layer of service and and support that they can definitely benefit from. Um, and then bereavement follow-up. Um, these things don't end at death. We want to make sure that the health care team is continues to be available as a resource to the family. Um, we want to be able to assess the family's needs, um, make sure that they have resources. Um, and also like a lot of times while the family is going through this, we're kind of their default support group. And then to kind of go from seeing us all the time to not coming around, sometimes that's a very difficult transition. Sometimes families need support, and sometimes it's helpful to not have to explain what happened and to talk to someone who was there and who knew. So, um, we want to do what we can to provide bereavement support, um, to reach out to the family, to let them know that they're welcome to contact us if anything comes up. Um, and then the final standard, um, you can't do this without good communication. You need to you need to have good communication, documentation and training. So, one thing is it's very important to have open, respectful communication. To this point, the psychosocial team members really need to be well integrated into the medical team. We need to be working side by side with the physicians and the nurses and, um, we should be integral team members. Um, it's important that the psychosocial providers have the same access to the medical records as the rest of the team. Like we need to read the medical charts and kind of understand what's going on from a psychosocial perspective. At the same time, we want the doctors and nurses to be able to read our notes, so they know kind of what's going on from a psychosocial perspective. And we need to be, um, be able to provide information about the interventions and the services that we are providing to the patients. In addition, um, there are a lot of specific pediatric oncology related psychosocial trainings, and it's very important that providers have specialized training and education to work effectively with families in these situations. Um, so now that we have the standards, the next challenge is getting to implementation. Um, and so a few years after the standards were developed, um, we kind of realized that there wasn't a lot of change among the psychosocial services delivered at a lot of the treatment centers. So, the movers of the, um, standards started kind of conducting focus groups and looking at information about how the standards were being implemented, um, and what the barriers were to consistent implementation of the psychosocial standards. Generally, they found that assessment of psychosocial risk at diagnosis was one of the key things that was being met, as as is determination of financial needs. Because generally, the families will tell you about that one. Um, and also psychosocial support delivery was, um, generally provided. We were kind of falling short of of the standards because we were assessing psychosocial risk probably at the beginning, but fewer centers were doing systematic rechecks about psychosocial risk. And also a lot of the psychosocial support that was delivered was kind of more informal discussion in nature and not necessarily evidence-based interventions. Which is ideally what we would like to see here. Um, and then again, some places did not have fully integrated psychosocial teams, which is necessary for full implementation of the standards.
[35:03]And this study also looked at kind of the provider satisfaction with psychosocial standards, and generally these are very similar. Um, but it looks like the oncologists are maybe a little bit happier about the situation than the psychosocial leaders. Um, which is good. We appreciate that support, but I think it's always good to kind of strive to actually do more than the minimum to reach to reach the goals at a better level. So, that is the goal.
[35:37]Okay, and I will let Spencer talk about continued implementation challenges. So a few years after the standards creation, uh, the authors of the standards conducted a social work assessment to elicit feedback about the implementation of these guidelines. And they found that despite, um, social workers and psychosocial providers knowing about the standards, the ability to actually execute them, um, was severely compromised in a whole another manner. Uh, some of the themes shared included those, um, which I experienced all too well, through through my own practice, that care is reactive and targeted at the fires, uh, which arise. So instead of a proactive systematic process, um, is very much a reactive, um, taking care of crises instead of getting into a, um, an operationalized, uh, process. And while some of the standards could be touched upon surface-wise, um, the care is not of the quality and the follow-through. When it comes to actually making sure that referrals happen, and that, um, communication, you know, goes not only, let's say, for neuropsych testing, that the results are actually communicated to the parents, for example, and then communicated to the school staff. And that that actual services, um, are implemented from that point in the school setting. Um, heavy caseloads lead to feeling spread thin, um, not being able to tackle all the tasks and the consults. It can lead to burnout, and, um, heavy hearts for those psychosocial providers, who know that, you know, something has fallen through the cracks. Support for program wishlists in terms of funding can vary, they can wax and wane. And often without a way to consistently and systematically assess all the patients and the parents, um, those parents or or children who might naturally be afraid or for, um, to say that something's wrong. They might be ashamed to ask for help, and they won't speak up. When in reality, they could really benefit from the supportive services. And a systematic, standardized process would pick up on on these patients and families as well.
[38:15]So while experiencing these challenges daily on the front lines with patients, a movement was taking place down I-64 in Frankfort, a fight to end childhood cancer right here in in our state of Kentucky. Through the tireless, uh, strategic advocacy of Jamie Boyd, uh, pictured here, um, mother of Paxton Boyd, a young cancer survivor, a Kentucky pediatric cancer research trust fund was established. Um, bringing together the one siloed institutions of of UK and Uvel, to collaborate actually together in research efforts on behalf of children in our state. So in the latest legislative cycle, now under the helm of Governor Andy Bashir, Kentucky once again appropriated state dollars towards the continued fight against childhood cancer. This slide details the amazing projects which the state is supporting right here at UFL, Norton Children's. Yet this time with the encouragement of Dr. Raj, Dr. Bolan, Dr. Sullivan, Dr. C, psychosocial care was given a seat at the table. And a comprehensive proposal for standard of care execution was acknowledged as a priority, and you can see that project at the at the bottom here. With the inclusion of this endeavor, Kentucky has not only shown its value, it values the children that are fighting for fighting cancer in our state, and they want to help find for curative treatments. With but with this support, with putting psychosocial services on the map, um, Kentucky has made clear that the overall wellness of children in Kentucky is a non-negotiable part, non-negotiable part of cancer care here. So, this state sponsored backing of a comprehensive project puts us, as a on the map, as a leader in showing children that they matter to. And if they have to experience a cancer diagnosis, they'll not do it alone, not in our state, and thanks to our amazing team here in Louisville, and at Norton Children's either.
[40:39]So, here's the standards project, and it's an implementation mission. This outlines, um, the aims of the project, and it's to develop an operationalized treatment pathway for the systematic assessment, the coordination, and the measurement of all the standards that Dr. Mayes touched upon. So, in the first, uh, six months of the project, we're creating provider templates for each standard of care. So, a psychosocial roadmap not, um, not only for the provider, and the providers will have one, but also a patient version. So, the patients have a a what to expect, um, during your cancer journey, um, map as well. So, you know, the goal is to educate patients, um, about the standards, family members. Um, so we can try to eliminate those conversations of gosh, I wish I would have known about that six months ago. Or, um, you know, if only I had known that that assistance was available. I could have really used that. Um, we don't know what the game-changing factor is going to be in that family's life. Um, I happened to just see a patient one time, um, in passing in the waiting room and happened to mention a, um, a survivorship opportunity. Um, an all-expense paid trip out to Arizona to spend a week with other, um, young adult cancer survivors. And I heard from from him and his parents that it really kept him going. This one experience and connecting with other, um, young people. We just don't know what the one thing in that whole map of evidence-based, um, interventions and, um, task resources is going to make the difference in that family's life. And that's why it needs to be, um, a systematic and a comprehensive process.
[42:52]So, here's another, uh, look at what the project is is going to try to accomplish. Uh, we have the provider team map with organized clinical pathways for executing the evidence-based standards. Standard, uh, checklists for each standard with tools, strategies, assessments, resources and referrals. We also, with patient psychosocial treatment plan or roadmap outline of topics and talking points for patients and families, what to expect during the unexpected and uncertainty. Checklist of available education modules, resources, assistance, opportunities and events applicable to each standard.
[43:52]We gathered some information through the years from families on like, wow, if if we could have just this one place where we can go, and all these applicable standards that apply to that family, um, could be there for them to reference in their own time. Um, according to their own circumstances. But it would be a relief also for providers and psychosocial providers as well, that the burden is not on them necessarily to make sure that they try to get this information to that family and get a hold of this family. Or, um, but everybody will have access to the same information based on the standards that apply to them in their situation.
[49:04]And I'm going to close with within the psychosocial standards of care. Um, there are 16 articles, there are 15 standards of care, but they gave a nod to interdisciplinary collaboration. We cannot do the work we do on any level without our team.
[49:25]So, um, this and all members of our team are represented here. But we just wanted to give a shout out to the team. We appreciate you. We appreciate everything that you do for the kids. Um, it's wonderful to be here and to work with you guys and, um, this is a great place to collaborate. At this time, are there any questions?
[50:20]Um, Dr. Schickler asked, are siblings seen in clinic or dealt with at non-school hour times? Um, generally, yes to both.
[51:08]That's a great idea, but we're open to it. That's a great idea.
[51:15]Um, I think that maybe the question just hasn't been posed yet, but, um, yeah, absolutely. If if they were open to that, we would completely do that. Um, and then another question are there any phone apps to give reminders on medication schedules, if so, are they effective? Um, yes, I know that there are a number of phone apps that do that, and also some pharmacies do that, too. I think one of the trickier things, too, with some of the medication regimens that we see, um, particularly in maintenance therapy for leukemia is that the the medication regimen may change from week to week. So, some of those reminders that are super helpful for consistently administered medicines may not be the best because we would want to make sure that all of those reminders got synced with up information. So, um, there are some, but, um, I mean, I feel like that one would be one that would be easier to coordinate, maybe with a pharmacy, then like using a, um, third party app. But that being said, a lot of families do have more consistent medication adherence, and we would definitely recommend that.
[52:48]Wonderful. Thank you guys so much. Thank you, it was very useful presentation. Thanks.
[52:56]All right. Thank you everyone for joining us today. Any further questions, please email the presenters. Have a good day.
