 It's my pleasure to welcome you to our public health seminar series and I would like to remind you that this period goes till 1pm. I know that people have to rush to other activities, courses, engagements. If you have to leave before we conclude the presentation, please try to do so as quietly as possible. And if you have your phone on ringing tone, please put it on vibrate or something silent. We have the privilege of being in this hall which has very good acoustics, so sound carries far and wide. We also thank the UC Irvine extension for helping us put this series on open courseware so we reach a broader audience. And if you have questions, something you didn't catch in the presentation, you can certainly wait a week or so and the video will be on open courseware. This is a service that has become a trademark for UC Irvine and we're working to have it as part of the seminar series. And also, thank you to our hosts for agreeing to do this. We also host lunch after the presentation so that you have an opportunity to talk and meet with colleagues who listen to this presentation and also with the speaker. That lunch will be at the anti-transructional and research building. It will be just across from this building about three to five minutes walk. So I'd like very much to extend the appreciation of the students, faculty and community partners of the UC Irvine Program in Public Health to Dr. Michelle Forte here for being with us today. She is an assistant professor in the Department of Anesthesiology and Pherioperative Care at the UCI School of Medicine. And she's also the co-director of the Center for Stress and Health. This is a campus-wide center. She's on the medical staff as a pediatric psychologist at the Children's Hospital of Orange County. And she got a PhD in clinical psychology from the University of Nebraska-Lincoln and then did full doctoral work at the world famous Mayo Clinic in Rochester, Minnesota. Her clinical and research interests involve the prevention and treatment of child and adolescent pain including chronic pain conditions, headache, recurrent abdominal pain, generalized pain. She has a program of research that incorporates health information technology all to improve the management of pain and symptoms in children. And that's the topic you'll talk with us today about. So please join me in welcoming Dr. Forte. Thank you for the kind introduction and for having me today. I'm delighted to be able to speak to you today about management of pediatric cancer pain. Can you hear me okay or do I need to talk louder? Okay, alright, thanks. So I wanted to start the talk just by putting this in a little bit of context and I think it helps set the stage. For the importance of the problem and also for why I am passionate about what I do. And so I wanted to present you with a patient example and this is Carla, who is not her real name, who is a 16-year-old female being treated for cancer. And she has pain as a result of metastases throughout her body from her cancer. So she's been dealing with quite a bit of pain. However, when she comes to the clinic, she tends to be quite reserved and she defers to her mother to answer questions for her. She doesn't engage very easily with healthcare provider. So her mother doesn't report any pain to the nurse practitioner at her visits. However, at one particular visit, the nurse practitioner notices that Carla is exhibiting some behaviors that are suggestive of pain. She sees her grimacing quite a bit and becoming quite withdrawn. So the nurse practitioner takes a moment to separate Carla and her mother to question her a little bit individually. And upon doing so, she learns that Carla has been dealing with very significant pain for the last few weeks. It's gotten worse and worse. So the nurse asks her, are you taking your pain medications? And Carla tells her, well, the doctor is only prescribing one pill for me to take at night. The actual matter is that she had round the clock prescription for analgesic medication that her mother had not been giving her. So they end up getting a psychologist involved to work with a family and after developing a relationship with the mother, the mother discloses that she has significant fears that Carla is not going to live much longer and therefore she doesn't want to give her medication because she's worried that she'll be too sedated to interact with the family. She also has great fears that Carla will become addicted to pain medication. So she's been telling Carla that she can only take one pill at night. And unfortunately this is an all too common scenario in kids with any type of pain but particularly with cancer pain. So we'll refer back to this case as I go through the talk and it kind of sets the stage for some of the themes that we'll go through. So I was thinking, I'm giving a public health talk, I better frame this as a public health problem. So then I went to my trustee institute of medicine report that came out in 2011, Pain in America. And right there on the first page it was done for me. And pain really is, when we think about chronic pain in general, it really is a major public health issue for several reasons. When we think about the prevalence of chronic pain, millions of people are affected and it's estimated that tens of millions of people are affected with chronic pain each year. There are also significant costs associated with chronic pain. It came out in Johns Hopkins recently that the estimated cost of chronic pain per year is $635 billion. That's right, billion dollars. So massive economic costs to our society. Besides the economic costs, there are costs to quality of life. There are emotional outcomes with chronic pain, depression, anxiety. We have lost productivity when it comes to work and school. So major, major seriousness in terms of the issues of chronic pain. There are also disparities associated with chronic pain. There is a wealth of research that shows that populations receive less than adequate treatment for their chronic pain. And those tend to be children, especially infants, the elderly and ethnic minorities. They receive sub-optimal pain management. They don't have as much access to pain management therapies. And there's even some recent evidence that shows that pharmacies in lower income areas are less likely to stock and carry opiate analgesic medications for fear of robberies. So patients are often unable to even fill their prescriptions when they do get them for pain medicine. There are also vulnerable populations when it comes to pain management. As I mentioned, children and people with chronic illness tend not to get the treatment that they need for their pain. So this really is, when we think about chronic pain and all that's related, a perfect public health problem and scenario. And public health really offers a structure and a framework to intervene in this area. And if we look at pain management being improved through new knowledge and basic science, clinical and translational science, epidemiological studies, public health really has a framework to do that. When we look at cancer pain specifically, the International Association for the Study of Pain estimates that there are 10 million people worldwide who have cancer. In the U.S. alone, there are over 300,000 children with cancer between the ages of 0 to 19. When we look at the data, although there is not a lot when it comes to pediatric cancer pain, the overwhelming majority of kids with cancer have pain. Some studies even report that up to 100% of kids with cancer have pain. And so this really is a hugely prevalent problem. In terms of what causes cancer pain, one of the great things about treatments is there have been so many advances in treatments for cancer that children are living much longer with cancer and surviving cancer at much higher rates. In fact, evidence just came out that over 80% of kids are surviving cancer, which is phenomenal statistics. The flip side to that is with the more aggressive treatments, we have a lot more impact on functioning. And what can come along with that is pain. The bulk of pain related to cancer is what we call atrogenic. So that is it's caused by the treatments that we're giving to cure cancer or to treat cancer. Kids have cancer pain related to chemotherapy, related to radiation, to surgeries that they have for cancer. And they're also subjected to repeated painful procedures during their cancer treatment, lumbar punctures, bone marrow aspirations, venom punctures, get IV starts and so on. And there are a number of pain management strategies, but what the evidence shows us is that they're not always used routinely and that kids have untreated pain during their cancer treatment. The other change that's come with advances to the healthcare system is that more and more children are being treated for cancer on an outpatient basis. And this is wonderful for quality of life of families. There's much more patient satisfaction when you can spend more time at home rather than in the hospital. And the flip side to this advance is that parents are now becoming largely responsible to manage their children's pain and symptoms related to cancer. And this is really paralleled in many medical settings and chronic illnesses that are being shifted to an outpatient setting. Parents are really becoming responsible to manage their children's symptoms and pain. There have been very, very few studies of pain management at home with children with cancer. Two have been identified in the literature. One by a Godali Duff and Colleen showed that pain was very common after chemotherapy. However, pain management was not assessed. So Van Cleveland colleagues did a study of looking at pain in children the first year after diagnosis of leukemia and also looked at pain management. And in this study, they followed 95 children at three hospitals in Southern California. Chalk children happened to be one of them. And they followed children for the first year after diagnosis of leukemia. And what they found was that pain was overwhelmingly common at each time point that they looked at. And they looked at diagnosis, rather induction, which is the start of chemotherapy and then each phase of chemotherapy throughout. And at every time point, there was a minimum 65% of kids reporting pain and typically up to about 80% of kids. Diagnosis was the highest point where it was nearly 100% of kids were in pain. They also looked at then administration of medication at home for pain. And what they found to me was quite shocking. And they split their analyses into age groups. So kids younger, kids in the 47 age range, got very little medications. So at most time points, they had less than 40% of medication administered. And even as low as 20%, even though 70% of kids are reporting pain. With the older age group, there was a little bit more medication administered, but still not even close to the number of kids reporting pain. Clearly, this is a huge problem. We have close to 100% of kids in pain and very few getting pain medication at home. And this is really where pain management is happening. That's a great question. And that's something that's part of the problem, I think. What we find among parents is there's an expectation quite a bit of the time that if my child is in pain, I will know it because they will be wailing and crying and visibly in pain. At this age, particularly as kids get into adolescence, you often see the exact opposite of that. You see kids becoming more withdrawn, more quiet. They may sleep more because they're in pain. The parent may assume they're sleeping more because they're tired when really it is the pain. Also in adolescence, just naturally, teens communicate less with their parents. So they may be less likely to spontaneously report that they're in pain. So that's part of the challenge, is that parents may be missing, that their children are in pain because of that withdrawn. But I will also show a study that parents are not treating their children's pain even when they are acknowledging their pain. So there are multiple things that go into the issue. So with the growing awareness of pain in cancer, there have been guidelines published about how to appropriately manage pain. And the World Health Organization put out one of the most often referenced to, and that's the cancer pain relief and palliative care and children guidelines. And with that, they actually published what we refer to as a step-letter approach on how to manage cancer pain. And I would like to thank Fergie for fixing this lovely diagram for me for my presentation, which I could not do. So, uh-oh. Is it something I'm doing here? I don't know what you did last time or I do it. They just fixed this too. I guess they didn't fix it. Well, I'll keep talking. You can reimagine the slide in your head of the step-letter, and I'll do my best to describe it. But essentially, a step-letter is a three-step instructional guide for management of pain. And it takes you through, at the first step, pain is at the lowest level, at a mild level, which is best treated with kind of over-the-counter medications, Tylenol, ibuprofen. As pain gets in the more moderate range, sure, if you're more technologically inclined than I am. Okay. As pain goes up to a more moderate range, then you start to use mild analgesic or opioid medications. And then as pain gets to the severe, you use the more strong opioid medications, such as morphine. And you keep at this until there's freedom from cancer pain. And the key with the step-letter approach is that rather than treat pain when it occurs, you actually treat pain around the clock. So you give doses every three, every six hours so that pain can be well-controlled. Within the step-letter approach, they also include for children, particularly what we call pharmacological pain management strategies. So those are cognitive and behavioral pain management strategies that work very well. For cognitive strategies, we have things like imagery. We have reinterpreting the pain in a different way. For behavioral strategies, we have things like relaxation and biofeedback. There are also physical strategies for pain management. You can use massage, you can use heat or ice. So you incorporate those along with the medications to really get a comprehensive pain management program and continue at it until the patient is free from pain. So we have all this evidence that people are in pain, yet we have all these guidelines that would instruct us on how to manage pain. So that leads to the question, why are children in so much pain that it's not being controlled? And so that leads us in the direction of really having to understand what are the barriers then to pain management. And given that children are largely being managed in the home setting, we really have to look at home management of pain and what's happening in the home. And particularly we have to look at parents. This slide has a really cute cartoon on it, so I'm hoping that you can see it. It's me describing it. It just won't have the same impact. It's on a blush, guys. Yeah, if we have a lamp, it's a lamp on the projector. I think the lamp's dead. See, you can tell if the lamp's dead. I would put it back. I think we just have to... I'll talk really fast. Sorry. Thank you. Thank you so much. It meant how fun it did. I hope it was worth the wait. So we not only have to look at it to the home, because parents are responsible for managing children's pain, but parents are influencing their children's response to pain. More importantly than learning how not to step on a scale, parents are really influencing how their children respond to experienced painful stimuli. And this reminds me of a patient example that members of my lab will potentially be familiar with. We have a program of research in the cancer center at Chalk Children's Hospital, and we had started this videotaping study to videotape children as they were undergoing painful procedures to look at anxiety distressed before procedures and what could we do to minimize that? And so we were checking some of the videos, and there was a video of about a three-year-old boy who was about to undergo a procedure, such as a lumbar puncture or a bone marrow aspiration. And we sedate children for these procedures so that they don't experience such pain, but there's still a lot of anxiety about going through something like that, particularly for a three-year-old. And this poor boy was just screaming, just this agonizing, inconsolable cry before this procedure. And he was sitting on his father's lap, and the father was sitting there basically doing nothing. And on the one hand, you could think, what is this father doing? Come on, help your child. But then you realize that the father is just paralyzed with fear himself and has no idea what to do to console his child. And this is part of the problem. And the father is just struggling through that experience how to respond, and is not going to have a good procedure next time around because he's been in so much distress. So we really need to intervene on parents. When we look at to the literature for evidence about parent management of cancer pain, unfortunately we don't find anything there about parent management of children's cancer pain. So we look to some early studies of adult caregivers taking care of adult cancer patients with pain and to identify what some of the barriers are. And when we look at this literature, there are some themes that emerge. One factor is that caregivers of patients with cancer are really overwhelmed themselves. There's a lot of emotional distress when it comes to taking care of a loved one with cancer. There is anxiety, there's a lot of responsibility to take care of someone with a chronic illness. The other challenge that caregivers are facing is that they really just don't have education about pain management. They really struggle with I don't want to cause too many side effects such as we saw with that case example with Carla. And balancing that with I do want to alleviate my loved one's symptoms. And they don't understand the mechanisms of pain management and how to appropriately do that. The behavioral pain management strategies or those non-pharmacological strategies they are being used but kind of haphazardly and there's not really a systematic way to do it and I think it really reflects lack of understanding. So it really points us in the direction that caregivers and likely parents just really are not equipped with the tools they need to manage pain. Because of the lack of data in this area we can look to other areas where parents are responsible for managing pain to look at some of the barriers and we've done that in our lab. We have a large body of research on parent management of children's pain after surgery and what we found in that literature when you look at it across studies is that parents are really under treating their children's pain. They are not providing prescribed analgesia. They may switch to something that's less potent because they're afraid of opioid medications. They give fewer doses than are prescribed or they stretch out in between doses. So there are a lot of ways that parents are under treating children's pain. So we have to ask what's happening. Why is that the case that parents are so hesitant to administer pain medications and so we have to look at parental barriers. One area that's really been pointed at in the literature are parent attitudes and beliefs about analgesic medication for children. What we find is that there are a lot of misconceptions about pain management and medication for children. Parents have fears of dependence like again we saw with Carla whose mother was very afraid even toward the end of life that her daughter would become addicted to pain medication and that is a frequent theme that we see parents are very afraid of addiction. We also see that the beliefs that we should only use these medications as a last resort or wait till the pain gets very severe rather than give this medication. And what we find is that these misconceptions, these beliefs are directly tied to parents administering pain medication at home. So the more misconceptions parents have the fewer doses of medication that they're giving to their children. So we have evidence that children are in pain. We don't have a good sense of what's going on in the home setting and so we decided to launch a program of research in this area at our lab at Chalk Children's Hospital and thanks to the help of Aditi Wahi who is very involved in this research program and created most of the 325 kids that we have we've been able to look at prevalence of pain and then also what's going on in the home as far as pain management. So we these are kids of all ages so we have both parent and child report in our data and what we found is that on the day of the study about half of kids reported that they were in pain that day when we asked about experiencing chronic or recurrent pain through parent report half of parents reported that their child was having recurrent pain. The average pain severity was in what we consider the clinically significant range of a 3 or higher so kids are experiencing significant pain and their pain is frequent so many kids are reporting that they were in pain 3 or more days a week so we found quite a bit of pain in our sample although not as much as we expected and what we found is that kids who were having pain were often hospitalized and that's a whole other issue. So when we asked about where kids were having pain what we found was consistent with what was in the literature that the head, stomach, back, legs and feet were the most common. Kids who are on chemotherapy tend to have neuropathic pain which is nerve pain and you'll find that in the legs, back and feet and that's why that's one of the most common pains. They also have what we call mucositis so you see a lot of painful sores in the mouth so you see a lot of pain in the head and mouth so what we found again was consistent with what's been established in the literature. We also asked kids how much pain was getting in the way of their functioning in terms of sleep household activities, social activities etc. What we found was that pain was really getting in the way primarily with sleep but really across the board in all different roles and functioning in life. So we wanted to then look at all attitudes about analgesic medication in this population as well again because we know that's a problem and a barrier and what we found is that parents were really endorsing to a high degree misconceptions about pain medication. We kind of hoped that maybe this would be a population being more familiar with pain management. We would see fewer of those attitudes but we didn't. And so for example what we found is that we asked questions like children should be given pain as little as possible and this is from a validated measure called the medication attitudes questionnaire and what we found is that not only were nearly half of parents agreeing with that but we also have a significant proportion who aren't sure and that's a problem as well. Because that tells us parents aren't really sure and don't have the education that they need to properly manage pain. So we know the opposite to be true. We need to use pain medication whenever children are in pain as frequently as we need to. And using it as little as possible actually leads to more pain and pain that's difficult to treat. So similarly we asked pain medication works best when it's given as little as possible and we have overwhelming amount of parents who either agree or are uncertain about this and again this is a problem because the opposite is true. Is everything okay with the projector? It is now but it goes out frequently. It'll just go out on the screen. So it's not a laptop, it's what, okay. I don't have to come back later to check the connections. Okay. And then another question is pain medication is addictive and overwhelmingly people are agreeing with this. And the challenge here again is that these attitudes are directly linked to how parents are giving medication. So the more they have these beliefs, the fewer doses they're giving their children. So what we've been able to do with our research program, again kind of going back to the surgical literature is show that parents really do give kids very few doses of medication and in one study we actually followed how many doses of medication parents gave their children after surgery when they were asked to give kids around the clock medication. And this is a paper we were able to get published in pediatrics to show that parents really overwhelmingly under treated pain. And we looked at this graph shows days one and two. This was kids getting tonsillectomy and adenoidectomy surgery, which is a very painful surgery for about a week after surgery. If any of you have had that as a kid you may remember. Hopefully your pain was well managed but as we know from the literature it isn't always. And so for example on the first day at home we had 86% of the kids and 4% received either no medication or just one dose of medication across the entire day. And on the second day almost 70% of kids had pain yet 40% received just one dose of medication or no medication that entire day. And kind of going back to your question these were parents who were actually reporting on their kids pain as well. So even though parents were picking up that their kids were in pain they were not giving medication. We assessed parent attitudes about pain expression and pain management in children and then followed them after surgery and what we found was that relationship between those attitudes. So if parents had misconceptions about pain medication or how kids express pain then they were less likely to give pain medication to their children. No these are prescription medications. Prescription medications. So not following physicians or pharmacist recommendations. The first thing about the first study is that these families were all part of a research study and so they were actually getting follow-up calls on a daily basis by research nurses which is not standard of practice. So even with follow-up calls to ask how is it going what can we help you with parents were still not administering medication. I'll just keep talking. So we wanted to then look at this in more depth in our cancer population study of close to 50 kids where we followed them for two weeks at home and asked them to complete diaries of pain severity and analgesic administration and what we found is that only 38% of kids got any pain medication during that two weeks and we looked at that then in relationship to pain scores and what we found is that on every day at least one child who was in pain got no medication and some days 20%. We then wanted to understand what were some of the factors that influenced whether or not parents administered medication to their children above and beyond pain. So what we found when we looked at child variables is that kids who got medication were in more pain which you may expect although we would hope that if you're getting medication that your pain is well managed so we kind of hope that you're not recording as much pain if you're getting medication. Kids who got medication were also more anxious so they had kind of trait like anxiety not situational anxiety but were more anxious in terms of their temperament and then they had poor quality of life so kids who were not doing as well in terms of their functioning got more medication. So probably the sicker kids. When we looked at parent factors that influenced medication administration parents who administered medication had more years of education so they were a more educated group. They had fewer misconceptions about using analgesia for children as we would expect and they reported that their children had poor quality of life consistent with child report. So we have clearly identified some barriers in terms of parental pain management and hope set the foundation for why this is so important. The other piece that we know about is that as I mentioned in the beginning there are some similarities when it comes to pain management particularly with children but also with ethnic minorities. There's a large body of research that shows that ethnic minorities do not receive adequate pain management and so we wanted to know more about this in children because there are really no data on this in children. There's some evidence to suggest that for example Hispanic and Latino children may have a tendency to underreport pain maybe at risk for sub-optiminal pain management but we really need to look at that in a systematic fashion. So one of the things we did was since we know that parental beliefs are a barrier for pain management we wanted to look at ethnic differences in these parental beliefs and so we did that in this population and we found that we had groups of parents who were English speaking white English speaking Hispanic Latino and Spanish speaking Hispanic Latino and what we found is that our Spanish speaking population tended to report the most misconceptions compared to the other groups and the English speaking Hispanic group was kind of intermediary between the three which suggests then again consistent with the other literature is that our children of Spanish speaking parents are going to be even more at risk for sub-optimal pain management. So clearly we have some areas of intervention that are needed and one area in terms of next steps what do we do with this information and data is we really need to talk about prevention and when we think about prevention I think about kind of two steps we have to have assessment and we have to have intervention let me skip forward to where I am there we go and so assessment really is key we can't treat pain if we don't know about it and when we think about pain assessment it's always referred to that self-report is the gold standard you have to get self-report pain and you have to get it in a systematic fashion however given developmental issues with children and particularly we see regression in a chronic illness so you see kids starting to act much younger you really have to have parent input as well and one method that's been proposed for assessment is called the quest method and this is just kind of I can't think of what that word is I want to say algorithm but a mnemonic so a mnemonic to use to walk you through comprehensive assessment and so clearly you want to ask the child question the child about their pain use a pain rating scale and ideally use a validated pain rating scale evaluate the behavior and that kind of again goes back to your question is a child showing even if they're not reporting pain are they showing behaviors consistent with pain do they have those overt pain behaviors or are they very withdrawn and quiet you want to get parent involvement take the cause of pain into action so for example neuropathic pain that I mentioned may be treated very differently than bone pain because of a bone tumor so you have to think about what is causing that pain in the leg and then take action and evaluate results so continue to follow up on pain assessment is key I would also argue that although parent involvement is vital we really have to take the word of the child at face value in addition to their behaviors so if you're seeing something that's inconsistent you really have to question the child and sometimes do that independently to find out because as we saw in the case of Karla a child may not report in front of their parent for a number of reasons but children really are the best reporters of their pain as long as they're at a verbal stage and evidence shows that parents really underestimate kids pain and they tend to rate it lower than kids would rate themselves in terms of pain rating scales I won't go into a lot of detail just to save time but there are a number of validated measures that can be used and we use the adolescent pediatric pain tool in ours and then another mnemonic would be the PQRST to get details about pain as far as what triggers the pain, what makes it better or worse is this a new pain, what other symptoms are being caused and so on I will also suggest that the problem with using pain scales is that they rely on retrospective reports of pain so a child comes in the clinic and you ask them tell me about your pain in the last week or two and the child will tell you but what we know about retrospective reports is that they're really really bad we as people have horrible memories that's just a fact and as you're studying for exams you probably feel that they're really bad and so our best data is real-time data and that's really the only way to know accurately what children are looking like in terms of their pain patterns because of that we have launched on a new project that we call PainBuddy and we're actually collaborating with CalIT2 right across the way and we're developing what we call an ambulatory monitoring protocol where children are given a tablet like an iPad or the Nexus the Google Nexus and on that tablet has a pain diary and it consists of validated measures of pain and symptoms and the child then completes that diary twice a day and the key with this is that the data are automatically sent to a server on our end so they're automatically available in real-time to the healthcare team so the healthcare team can have the data and know this child needs some help they have some pain rather than relying on those retrospective reports the nice thing about PainBuddy because there are other pain diaries out there but they're a little on the boring side so we wanted to harness the capabilities of CalIT2 and make this a really engaging kind of fun diary for children and build in a number of features to make it more than just a pain diary and so what we're working on doing is having the avatar that the child actually gets to customize and is their pain buddy and kind of walks them through the diary process the avatar we are working on it to be animated and to really engage with the child to have this a process that the child is really invested in and then the avatar will also in a future project be able to deliver skills training to the child teach them how to use cognitive behavioral strategies to manage their pain in addition to have the data being sent to the healthcare team to have examples again children get to build their own avatar they have a number of heads and faces and bodies and clothing styles to choose from and background themes and skins to make it really more personalized for them the the diary is constructed in such a way that if they report yes to pain for example they're asked follow up questions to really get a sense of what's the severity of the duration the pain what are some of those sensory components how much is it getting in the way this is an example of the validated measure has what we call a body map and on paper pencil kids kind of sketch in where they have pain and on our version the outlines are already demarcated and so they just select on an area and then it populates a list of the areas they've chosen the other area where we really need to direct intervention is at parents clearly and so also with Cal IT2 we're working on some interventions directed at parents and one of these is a pain management protocol that's going to be delivered to parents in the hospital setting to provide them education about how to manage pain in children and hopefully target some of those misconceptions so that we can really give parents a foundation they need to properly manage pain but we also wanted to target parents in a different way because parents themselves have overwhelming anxiety when they're dealing with a child with cancer and so the other feature to this intervention is that it provides biofeedback to parents so in real time it's collecting physiological data from parents and then teaching them some relaxation to manage their own anxiety to help them better than take care of their children and so I'll just quickly go through some examples of this providing tailored information to parents in a number of different areas how to manage for example procedural pain, treatment related pain and this is just an example of part of the education component it's phrasing questions to parents within information about what to expect and then how to manage pain so we're providing information on distraction as well as pharmacological interventions to tell them what distraction is and what their role is I'll skip through this as I mentioned the system has biofeedback so we're going to be using a wireless wrist strap that measures heart rate and providing feedback in the form of an instructional piece where we teach parents how to do diaphragmatic breathing and then the prompt on the right is a ball that gets bigger and smaller to guide the parent's breath rate to really slow relaxed breathing and then the coherence indicator is really just their indicator during the training period of is their body in a relaxed state and then the program shifts to using visual and auditory feedback only to guide relaxation so we have some themes that operate in a slideshow that move as parents are getting into a relaxed state and music that plays to guide their relaxation as well and we chose a number of different themes for parents to select what kind of best suits their relaxation so they can pick what they prefer and this is just some example of the data that we get what we're really looking at is what we call coherence and this is looking at the synchronicity of your heart rate variability and your breath rate so for example as you inhale your heart rate changes and as you exhale it changes and so we want to see variability in heart rate it's really the consistency of that variability that indicates relaxation and the next steps in this project are to administer this with parents and get their feedback is this useful is this helpful what can we do to make it better so I will wrap up with saying what do we do next as far as prevention and really I think the key is knowledge translation as I mentioned we know we have guidelines for pain management we know that with all the evidence we have we can make patients with cancer comfortable the reality is that we're not and so there's clearly a barrier in getting this evidence into practice and that's our huge challenge right now and I think really something that the public health area is a perfect fit for is how do we get evidence base into practice and this is a huge challenge in many areas I know from personal experience I have a toddler and I take her for her immunizations at regular schedules and what people probably don't even know is that we actually have established guidelines for managing pain related to immunizations and they include things like topical anesthetics creams that numb your skin they include things like distraction so that your child isn't really focused on the shot they include things like sensory overload so that really does hurt less but when you go to take your child in for the immunizations none of that happens and the question is why is that the case and so pediatricians were asked how many of you use for example a topical anesthetic just one part of that a cream to numb the skin less than 1% reported that they did that is a huge huge problem part of the challenge is people think well it's just a one time thing it's just a shot it's not that big of a deal but what we know with this growing body of literature is that exposure to pain impacts not just your behavior in the future but your physiology in the future it's changing your your central nervous system your pain system and that's that's a big concern the other problem is that when we ask pediatricians why aren't you using this topical anesthetic the overwhelming majority said it's just not what I do and so what we're really coming up into face is that we have to change behavior in the healthcare setting we have to change what people are used to doing they may know that this is something to do but they are just not used to doing it and that's where we really have to impact is patient or healthcare provider practice and again I think that is a challenge for you all in your future I hope so I just wanted to thank quickly I couldn't have done this program of research without my mentors I've came without our fantastic group at the center on stress and health without Aditi and Arianna in particular who have been involved in this program of research Eva for keeping us all on track and thank you for your time and attention despite all the technical challenges and any questions I'm happy to answer how does that relate how does that relate to the body of knowledge that says that family members typically overestimate patients pain and providers typically underestimate pain there's actually recent data that suggests the opposite in children that healthcare providers are becoming better at assessing children's pain and are more consistent with child reports whereas parents tend to underestimate children's pain so I think that's one of the reasons that parents may under treat children's pain is they're not understanding the severity of pain but I only think that's a small piece of the puzzle because even when parents are accurately reporting they're not giving their kids medication so I think there are a whole bunch of other things going on as well great question the visual imagery to get parents to relax I guess what is the instrument that measures all of those things there's been some research in health psychology and I participated in one where people had really very different preferences and I'm wondering about the range of options you have I mean most of it is nature and whether or not you have published that particular aspect of the work to know the diversity of experience and the impact of it that's a great question and something that we hope to do with the next step of that study is to have parents use it and give us data on their preferences or experience and so we can have a better understanding Dr. Mark Bachman our collaborator Kali Tutu just came back from Munich and while he was there they actually had some seminars on biofeedback and what they're finding is perhaps even using different modes of giving current feedback so not even you know images of nature even things like that but just kind of more vague or amorphous type feedback because I think you do run up against that I might find an image very relaxing and it might be you know stress inducing for someone else but we will hope to get that data and then report on that it was all planned just to show you oh thank you