Hello, everyone, good morning. Thank you so much for joining us today. This presentation is brought to you by the Opioid Response Network and is titled Pain Management in Sickle Cell Disease, the Big Picture. Can you go to the next slide, please? So, like I mentioned, this presentation is brought to you by the Opioid Response Network. The Opioid Response Network is a SAMHSA-funded organization that provides free training and technical assistance in the areas of prevention, treatment, and recovery for substance use disorders. Next slide, please. And like I mentioned, the ORN accepts requests for education and training from all 50 states and nine U.S. territories, and each state and territory has a designated technical assistance team who is here to assist with any matters related to training and technical assistance with substance use disorders. Next slide, please. 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And this information will be emailed to you, but basically, an evaluation has to be completed in order to receive credit. Instructions to complete the evaluation and to download the certificate will be emailed. So basically, you will have to create a PCSS account. If you do not have one, complete the evaluation. And if you have any issues, there will also be an email address that you can reach out to. Okay, next slide. And now I will pass it along to our presenter. Hello, good morning. My name is Christine. I'm the nurse practitioner for adult patients with sickle cell disease at UC Davis and hematology oncology. Our learning objectives today will be we'll assess our knowledge. We will discuss acute pain management for vasoclusive events. We're going to discuss risk assessment prior to starting opioids and the exit plan. We're going to discuss what's an appropriate daily OME. We're going to talk about an acute pain paradigm versus a chronic pain paradigm. Alright, so first we'll start off, let's assess our knowledge. So what do you know about sickle cell disease? If you guys can unmute and chime in real quick. A few words. It has different effects based off of exactly what kind of sickle cell disease you have. It's not just one illness or the one set of symptoms. Right. Different phenotypes, different expressions. It's a disease that's very misunderstood. Yes, absolutely. Sickle cell is a disorder regarding red blood cells and just dealing with their shape, transitioning from a normal red blood cell to what is a sickled shape. And because of that sickled shape, a lot of times these red blood cells, they die early and they block blood flow, leading to pain that is common in sickle cell disease. Yeah, absolutely right. All right, thanks so much for jumping in and participating. So yeah, let's get going. You guys know quite a bit already so this is great. So, what did I know about sickle cell disease? Actually, I knew very little. When I first came into this role with, before I started taking care of people with sickle cell disease, in my training in total from my bachelor's in nursing at Penn and my NP program at UCSF, I met a total of one patient. It was one young woman hospitalized at Thomas Jefferson Hospital in Philly. She was in pain. She was suffering. She was withdrawn. And she was dismissive of outsiders. She just looked at the direction of us students then looked away. I heard from my preceptor, pain management is supportive care. It's opioids, it's hydration, distraction. Well, if that was a treatment, it didn't look like it was managing her pain adequately. You know, the suffering on her face was apparent and I felt helpless to help her. So I really, I didn't know much about sickle cell disease from my end of one before I came to this role 11 years ago. I was a primary care provider with my NP training in geriatric primary care, palliative care and hospice. But I knew that there was definitely work to be done. All right, so just in brief, what is sickle cell disease? As you guys have discussed, and as you, as many of you may already know, this will be a brief review. Right, so it's an inherited genetic disorder. The single base pair point mutation in the beta globin gene. It's a substitution of the amino acid valine for glutamic acid. The red blood cells deform into sickle shapes whenever a person is deoxygenated or under stress. It could be emotional stress as well that causes the sickling. And then this vaso occlusion of microvasculature causes hypoxic and ischemic damage to organs. And the organ damage, unfortunately, accumulates over time. What's in a name? So when we hear sickle cell disease versus treat, treat, or Nuiwi, you know, this is onomatopoeia for relentless and repetitive gnawing pain. And these are the terms in the countries of origin. Just want to say, doesn't it have a different impact on us when we hear a different name? Sickle cell disease sounds a bit more sterile, a bit more controlled. We can see it underneath the microscope. But when we see these pictures and we see these, these, you know, these young babes, it just, it strikes us differently. This can help in terms of adding a bit of compassion when we're talking with patients who no longer manifest the stactylitis in their adulthood. But we know that this has, you know, this has impacted them and traumatized them from an early age. All right, some other terms that I've heard that I think are impactful. Sick as hell disease, right? So some patients who are living with it, they call it sick as hell disease. Other patients would call it sick cell disease. This is a funny little graphic that term evokes for me. So both names are equally true, right? They're living it. They're describing it. All right, so how do people get it? Brief little punnett score review, right? So both mom and dad could be could be unaffected. They're carriers. And they may have no idea that they have the sickle cell trait. Say the first child is normal. They have normal hemoglobin, AA. The next two, AS, AS, and then the fourth child has SS, and that is sickle cell disease. All right, as somebody discussed earlier, right, there are different phenotypes and different expressions of this disease. Sickle cell disease is a heterogeneous disease. There's SS, S beta null thalassemia, S beta plus thalassemia, SC, SD, SE, SO, Arab. When I first heard these, they were all really confusing to me. It really helps just think of it as a umbrella term. Sickle cell disease is the umbrella term, right? And so SS and S beta null thalassemia, they make up about 75% of people who have sickle cell disease. And that specific, those two subtypes we call sickle cell anemia. Those are the most severe expressions of sickle cell disease. Highest rates of stroke, acute chest syndrome, splenic sequestration, dactylitis. And then the other 25% of people living with sickle cell disease have SC, S beta plus thalassemia, SD, SE, SO, Arab. Those are usually less severe in terms of expression. Some of these people can make it through their childhood life and much of their adulthood life without even knowing that they have sickle cell disease. Some have even made it into the military. Some have been like six years old before they've been diagnosed. Okay, so what does life look like with sickle cell disease? It is, unfortunately, a life of pain, a life that's marked by delayed puberty. And then once the person hits adulthood, it's accelerated aging. There's infections. It is inherently an underlying clotting disorder. It's an inflammatory disorder. And there's multi-organ damage that occurs throughout the lifespan, starting in childhood. And so definitely coordinated multidisciplinary care is needed. These patients need to be established with primary care. And oftentimes they need to consult with neurology, neurosurgery, GI, nephrology, GU, a whole host of people, pain medicine, behavioral health. And you'll learn more about medical management with Dr. Christina Clay at Cooper. All right, so hearing all this, let's assess our comfort. You might be thinking to yourself, why me? I'm just a primary care provider. I'm just a nurse. I'm just a social worker, community health worker, a manager. Why would I become the expert on pain management? These are all thoughts that I've had myself. You know, I'm not fill in the blank. I haven't published prolifically. I'm no legend. You know, we all have our doubts and fears, right? So I'm not this renowned person, but who's a giant in sickle cell care. But here's the reality, right? Our patients are here and they're asking for help. So, you know, they're at the door. They're suffering in the ER. They're suffering at home under the covers. In New Jersey, you have an estimated 2,000 cases of sickle cell disease and another 80 to 90 births occurring annually. Right? And where would our patients rather be? They don't want to be at clinic, in the ER, or under the covers at home. They want to be like you and I, right? Enjoying fun in the sun, be productive members of society, attending birthday parties. And so that's why I really got involved in this work. And so over these last couple of years, I've been doing a lot of research. And how to better treat pain for our patients to get them restored and back to their communities. All right. So let's talk about acute pain management for vaso-occlusive episodes. All right. So by and large, we're sort of talking about acute pain management for vaso-occlusive episodes. All right. So by and large, we're supposed to encourage our patients to manage at home. And they're supposed to manage at home with their little mini pharmacy at home, you know, with their Tylenol and NSAIDs. And usually a home supply of opioids. Now, as we all know, we have this opioid epidemic. Right? And so CDC had these great clinical practice guidelines prescribing opioids for pain. This is from 2022. And I love it. It's a great guide overall. But I do want to point out, it says this excludes pain management related to sickle cell disease, cancer-related pain, palliative care, and end-of-life care. Okay. So moving on next. We have something called the American Society of Hematology 2020 Guidelines for Sickle Cell Disease. Management of Acute and Chronic Pain. This is written by Amanda Brandahl, Patrick Kerl, and a whole host of renowned experts for sickle cell care. And this is a great baseline that we start with. So for adults and children with sickle cell disease, presenting to an acute care setting with acute pain related to sickle cell disease. We're talking about, like, in an ER, in an infusion center that's embedded in a clinic. Right? So the ASH guideline panel recommends rapid, within one hour of emergency department arrival and assessment, administration of analgesia with frequent reassessments every 30 to 60 minutes to optimize pain control. So this is definitely the gold standard, what we aim for. And again, this is, we have the definitive guide here on sickle cell care from the NHLBI. It is the comprehensive guide. I highly recommend downloading this and keeping it saved on your desktop as a reference, or printing it out and putting it in a binder to read through. That's what I did, and I constantly use it to go back as a reference. Right? I want to point out some things in this guideline, which is that the first VOE may occur as early as six months of age. So if you remember, if you look back at the picture of the little baby with the swollen hands and the dactylitis. The pain management must be guided by patient report of pain severity. And I want to highlight again, we initiate analgesic therapy within 30 minutes of triage and within 60 minutes of registration. So this is something we strive for and we push hard for with our local ERs. And we consider escalation of dose by 25% until the pain is controlled. All right. And I want to point out this. This is me on my soapbox here. All right. A sickle cell crisis can occur without any objective findings. There are no tests to rule in or to rule out a VOC. There are only tests that potentially rule out other causes of pain. Right? So if somebody has a fever, somebody comes in, they have pain. So when it comes in, they have pain. Order some labs. They have fever. They have leukocytosis. Their hemoglobin level has dropped. Their retic count is low or high. This can guide clinical decisions, but this should never guide whether you believe the patient is experiencing pain. And this is a very common misconception. I see this in notes and hear complaints about this all the time. I know somewhere, somehow, some people are trained that they can look at a smear and it will tell them whether or not somebody is sickling. And then I'll see somebody write this into a note. And it says the patient has minimal sickling on their smear. And their retic count is good. Therefore, I don't think they're in a crisis. But in the meanwhile, my patient is experiencing pain. And when they hear that from their provider, it just is so alienating. And they feel so misunderstood. And they feel like they're not getting the care they need. And it comes against them. And it breaks trust. So truly, I want to say pain is pain. And we have to believe the patient that they are in pain. All right. And the reference for this is from the NHLBI guide, the section on vaso-occlusive crisis. All right. So here's some pictures of what the guides are. I'll read through this later. But this guide is really key. You know, for another example, just recently I had a patient with sickle cell disease who was experiencing influenza, right? Terrible flu season we had this year. She had influenza and chest pain. She showed up to get care. And the doc was just going to order Tamiflu and a CBC. No chest X-ray or other labs. But luckily the nurse was experienced enough. And so the nurse who was going to draw the labs caught this and said, oh, no, this isn't going to work. You need the full workup still. And so it made sure the chest X-ray and all the other labs were ordered. All right. This is the next page in the guideline in the NHLBI guide. And I just want to highlight, this talks about antihistamines because this is a really big sticking point for people around the country. All right. Antihistamines are recommended only every four to six hours orally. And we don't administer it with each dose of opioid in the acute VOC management phase. And so we do have some patients who come in and they say, hey, I need antihistamines every 30 minutes. And we have to tell them this is not safe. We can't do this. All right. So how should our patients be treating their painful episodes at home? Talk about this real quick. What makes people feel better? It's hydration. It's heating blankets and hot showers. It's sleep, naps and rest. It's distraction. There's a huge role for building a supportive friends and family network. There's, of course, Tylenol and NSAIDs as a base. And then there are the oral opioids to take at home. In a typical VOC episode would last about five to eight days. That's what the literature says. I would say, though, that there are, that's one VOC episode. But one VOC episode can trigger another VOC episode, especially if somebody is under a huge amount of stress. For this, I would also say showers may be up to an hour long. And so, of course, that's going to run up the utility bills. So if you can think of a reduced cost utility program area, try to get your patients qualified for this. I know a lot of this sounds like, you know, it's like the easy stuff, the self-care stuff at home, but it's actually the hardest stuff living this lifestyle. Some have reported to me that being able to prioritize sleeping really helps and that falling asleep will take away the pain from a mini-crisis that was already lasting a few hours. As soon as they fall asleep and they wake up again, the pain is gone. All right, let's talk about risk assessment prior to starting chronic opioid therapy and the exit plan. All right, so just like flying in an airplane, you need to discuss the risks and an exit plan. All right, so should you start somebody on opioids? Do you know how to stop it? If you don't know how to start it, how to stop it, you probably shouldn't be starting the opioids. And I want to put in, I want to, I want to equate this to flying in an airplane, right? We all get in on an airplane and we, we have to listen to the flight attendants teach us and tell us about all the safety features of the airplane and how to exit in case of a plane crash. Now, the risk of a plane crash on a commercial airline with a single flight is something like 0.0000001%. That's like, like five zeros before the one. So it's tiny, it's minuscule, yet we all learn how to exit the airplane. Now, what's the risk of addiction to opioids with a single prescription to take home? It's about 10%. And the range can estimate from 3% to 19%. Right? So this is huge. And so I think it's so important that we teach all of our patients, our little pediatric patients and their parents and loved ones, our adult patients. Every time we're prescribing them, when we're initiating this, we should definitely have a detailed discussion about whether or not opioids is right for them and talk about the serious risks and side effects. Yes. Great question, Lee. We will definitely talk about suboxone versus methadone and that will be in part two. But I think it's really important to say, like, I do have to go over this with my patients. If you are functioning well on long-term opioid therapy, we should still talk about the risks and benefits of continuing this therapy. And if you are functioning poorly on long-term opioid therapy, then continuing long-term opioid therapy is not suggested. Right. So there are a few screening instruments that are really helpful to use when getting to know a new patient population, whether it's coming in new to a clinic or meeting people for the first time. There's a SOAP-R, there's ORT, the 4As. These are all great ways that teach us to assess. Risk screening in its current state is, of course, it's not the only thing that can be done. We can expect many false positives. And we should know that low-risk patients are not no-risk patients, but these are all helpful tools. I'll just show you pictures of them so you can familiarize yourself with them if you're not using these yet. I like the SOAP-R because it does, it talks about things like, like the mood swings, the stress level at home, if people have been told they have a bad temper. There's ability to kind of assess, like, is somebody using opioids to cope, what we call copioiding. There's the opioid risk tool. This is helpful because it teaches us how to assess the potential risks. And then there's the 4As. And I actually put this into my EMR as a smart phrase, and it really helps me just to guide the discussion and reviews all the possible aberrant drug-taking behaviors. Right. And if I am going to, if I do find that somebody has opioid use disorder, I find it very, very helpful to bring out this DSM-5 criteria. And I print it out for them, and I show it to them, I check all that apply to show them where we're coming from to say that it looks like you've been diagnosed with opioid use disorder. It looks like the issues you're having would be consistent with the issues you're having would be consistent with this. Let's move you on to get some help. You know, we stand here with you. We're on your team, but let's get you some help. All right. Here's another question I often get. When do you use a urine drug screen? I would say a random urine drug screen is required for all of our patients who receive opioids for us, and random can be in clinic, in our adult day center, in the infusion center, or in the hospital. We also use it when people, when people have strange behavior. I would say most positive urine drug screens were not expected by the clinician, and sometimes not even the patient. So some examples we've had are, you know, a patient reports they took a Xanax from a friend. It was actually fentanyl. It was actually fentanyl. Another patient reports they took an oxycodone from a friend. It was actually fentanyl. A patient reports they went to smoke hookah, and they showed up with fentanyl in their urine. That, I don't know. Can hookah be laced with fentanyl? But this all warrants, you know, firm discussions of the risks of combining opioids with street drugs, and that this is synergistic for respiratory depression, overdose, and death. So what's an appropriate daily OME? I'd say ideally an OME of 90 or less. Here's a few examples of what I prescribe for my patients that really work well for them. You know, different people say different meds work well. So there's some oxycodone 5s, Norco 10s, Dilaudid 4s. These are all very reasonable. If a patient has very bad AVN, it's reasonable to escalate, and they're up in their, you know, into their 40s and 50s. It's reasonable to escalate up to an OME of 200. But I would highlight that an OME of greater than 200 does not equate greater analgesia, but it does cause more AE. And I really focus on function with my patients, right? So if the, are they keeping up with full-time responsibilities? Do they have, are they visiting the ED or being admitted under four times a year? If they are, then this is good. We'll keep going. But if they're not, then we really have to have frequent conversations about what is working and what is not. You know, is this really giving them the quality of life that they want? Is this giving them the quantity of life that they were hoping for? All right. Let's talk about chronic pain versus acute pain. So acute pain, we'd classify as pain that results in an unplanned visit to an acute care setting for treatment. It's sudden onset and time limited. And the duration is under one month. Chronic pain, the definition I'm using is reports of ongoing pain present on most days over the past three months in either a single location or multiple locations. And for most, I would say four or more days in a week. All right. And here's where things get sticky about what is acute pain? What is chronic pain? When is buprenorphine indicated? All right. So for a minority of patients, frequent acute care treatment using individualized opioid dosing may be ineffective and detrimental to long-term care goals. And a more chronic care paradigm with other approaches may be And this is huge. This is the underpinning of what I've been doing for these last three years here at my clinic. It's been trying to explain this concept to my patients. And this is where, you know, the bulk of the work will be for our next session. Right. So here's some examples that we talk about that I use with my patients, right? So once I do my full assessment of the patient, if I've identified that their pain is three days per week or more, if it's coming and going, or if it's all the time, then I have to talk with them and say, if we keep using this acute care paradigm and we keep treating you with the IV opioids or the oral, high doses of oral opioids, all we are doing is worsening the pain. And if we keep treating you with the IV opioids, all we are doing is worsening the pain. Or the oral, high doses of oral opioids, all we are doing is worsening your pain. Right. This is driving up your tolerance. It's making you dependent on the opioids and it's multiplying the adverse effects. It also can be worsening your pain and causing opioid-induced hyperalgesia. Right. And I have to go through the list. It's painstaking. Go through the entire list of what, what their issues are and try to convince them that they're having adverse effects from opioids. All right. Paradigm shift. This was kind of a strange term to me when I first heard this. And so I had to do some, some studying to figure out what paradigm shift Dr. Pat Carroll was talking about. So the word paradigm, it comes from the work, the Greek root paradigma, right? It's the pattern we expect to see. It's the mental map of the way things are. It's the window through which people see the world. Right. And so we think we see the world as it is and same with our patients. Right. But in fact, we see the world as we are. We see everything from the perspective of our own paradigm. This is from Stephen Covey. Right. So here's some examples of paradigms, right? One is I'm too old to change. Another one is anyone can change. One is those people are all alike. Now there's, everyone has unique strengths to offer. And the big paradigm for my patients, this is acute pain. So I need IV opioids or this is chronic pain and I won't seek IV opioids for chronic pain. Right. So all significant breakthroughs are break widths, old ways of thinking. If you want to make minor changes in your life, you work on your behavior. But if you want to make significant quantum breakthroughs, you work on your paradigms. That's from Thomas Kuhn. All right. Here are the references that I had discussed. I will pass the baton to Dr. Ravi Prasad. Thank you very much, Christine. Appreciate your presentation. So I am Ravi Prasad. I'm a pain psychologist at UC Davis Division of Pain Medicine. And I'm going to speak with you all about the role of psychology in managing pain associated with sickle cell disease. A couple of disclosures, a couple of objectives, and then I'm going to start by putting pain in context. So I always kind of like the bigger picture. So US Department of Health and Human Services and the CDC estimates that just over 20% of the US population has chronic pain. And of those individuals, just over a third, 36.4% have what's called high impact chronic pain. And that's pain that has been present for at least three months and results in significant impairment in at least one domain in a person's functioning. Chronic pain tends to be most prevalent in women, individuals over the age of 65, and in non-Hispanic white adults. And it tends to be more prevalent in rural areas. But what causes pain, right? Certainly we can see that there's a pretty high prevalence of pain in this country, but what are the causes? Well, we can break pain down into multiple etiologic pathways. We know that there are different biological factors that cause the onset of pain, physical factors, and psychosocial factors that influence the onset of pain. As a psychologist, I'm going to focus more on this latter group of the psychosocial factors and their roles. So within these, we can further break it down into three broad categories of mood, early life experiences, and coping mechanisms and other psychological variables. So I'm going to start with mood. So Hurdy and Wang were interested in the relationship between depression and pain. And so they examined data from the National Population Health Study in Canada. So their study had a relatively large sample size, approximately 9,900 individuals. And their dataset included information on mental health status, lifestyle behaviors, healthcare utilization, and other socioeconomic information. And the study was administered, or the dataset, excuse me, the survey was administered twice with roughly two years lapsing between each of the administrations. And what they found was that if a person endorsed the presence of depression at time one, they were three times more likely to endorse the onset of low back pain at time two. Now what's powerful about this study is it's a prospective study. So it's not asking a group of people who were already in the clinic presenting with low back pain to look back and see if they have a history of depression, but rather it's taking a population of individuals before the pain is even present and identifying a risk factor for development of pain over the course of time, that risk factor being depression. There was a similar study that was done here in the U.S. by CMS with a much larger N. So the sample size at time one was approximately 90,000, 91,000. And at time two, they had a little bit of a drop-off, but they still had a pretty robust number, approximately 55,000 individuals at time two. And similar to the Curry and Wang study, there was two years that elapsed between the administration of the survey instrument. And their dataset was comprised of the SF36 health survey, demographic information, information related to mood, and information related to general health, such as health complications, comorbidities, or the presence of other chronic conditions. And their findings were very similar to Curry and Wang in that if a person endorsed the presence of depression at time one, they're more likely to report low back pain, even when controlling for other confounding variables. So again, we're able to see through these two studies that the presence of depression is strongly associated with onset of pain in these two prospective studies. But that's just mood. Depression is a mood-related issue. How does context influence pain? Well, this was something that was of interest to colleagues at CDC and Kaiser Permanente. Kaiser Permanente is one of the largest or is the largest HMO in this country. And they were interested not just in context, but specifically understanding how the environment for children impacts health and well-being over the course of a person's life. But even more specific than that, they were interested in understanding how adverse events in the childhood environment impact health and well-being. So the authors identified specific adverse childhood experiences. So physical neglect, and this is where a child doesn't have their basic physical needs taken care of, not having regular nutrition, not having consistent housing, not having clothing. Emotional neglect, and this is where they don't have anybody, any emotional regard paid to them. They don't get warmth, emotional warmth, connectedness, things along those lines. Physical abuse, emotional abuse, and they characterize emotional abuse as being more directive than emotional neglect. So being told hurtful things, you're stupid, you're not good enough, you can't do anything right. Sexual abuse, anybody in the household with the substance use problem, anybody in the household being incarcerated, anybody in the household with the mental illness, witnessing the mother being treated violently, and the separation or divorce of parents. So these are the specific adverse experiences that the authors operationally defined. In their initial data set, they found that 38% of the respondents experienced two or more adverse events. So the initial data set was collected in the 1990s. They collected data on approximately 14,000 individuals, and this study is ongoing because the authors are continuing to follow these individuals to understand how these early life experiences shaped their health and well-being over the course of their lifetime. And again, 38% of the individuals in their initial set endorse two or more adverse experiences. But what they're finding is that the higher the number of adverse experiences a person endorses, the more strongly it's associated with risk for negative outcomes in terms of injury, mental health, maternal health, infectious disease, chronic disease, risk-taking behaviors, and life opportunities. And the literature, if we look at the literature, we see that this has already been borne out. Looking at the National Survey of Children's Health data, there's analysis of approximately 48,000 data sets, or pieces of data, and found that the risk for developing chronic pain was higher as the number of adverse childhood experience variables endorsed increased. In a separate study, a systematic review and meta-analysis of studies relating to sexual abuse and somatic disorders, looking at literature that spanned approximately three decades, found that the history of sexual abuse was associated with the lifetime diagnosis of functional GI disorders, so things like irritable bowel syndrome, nonspecific chronic pain, so things such as fibromyalgia, non-epileptiform seizures, chronic pelvic pain, and endometriosis. But finally, we get to the last category of coping strategies and other psychological variables. So, Celestin and colleagues were interested in the effectiveness of psychological screening and identifying patients who would fare better after lumbar surgeries. So, looking at specifically treatment outcomes after lumbar surgeries, and is psychological evaluation helpful in predicting who may do well? The authors defined successful treatment outcomes as decreased pain, increased function, return to work, and reduced medical treatment. And I think all of us would agree that these are generally the outcomes that we want for all of our patients, regardless of what type of pain they're presenting with. But what the authors found was that there was a positive relationship between one or more side factors in poor treatment outcomes in over 90% of the studies that they reviewed. So, the most useful predictors of poor outcome were resurgical somatization, and somatization basically refers to physical manifestations of stress, depression, anxiety, and poor coping strategies. The factors that were minimally predictive of who would do well, and again, minimally predictive of successful outcomes as defined by decreased pain, increased function, return to work, and reduced medical treatment, were the pretreatment physical findings, activity interference, and presurgical pain intensity. Now, this is important, and this is very telling. When I talk to my surgical colleagues, I just actually presented this study a few months ago to neurosurgical colleagues, and they said that it's these latter three categories, pretreatment physical findings, activity interference, presurgical pain intensity, combined with imaging studies, to help them determine whether somebody's a surgical candidate or not. But the reality is that has little utility in determining who's actually going to have favorable outcomes, whereas the most useful predictors are depression, anxiety, coping, and somatization. So, what does all this mean? Well, I get back to that question that I asked at the beginning of this section. What causes pain? Well, unfortunately, it's not just a simple linear cause and effect type relationship, but what you can see from understanding these different factors, mood, contextual variables, coping, is that it's just a touch more complex, that there's a wide range of different factors, psychological variables, biomedical variables, biomechanical factors, that influence the onset and maintenance of pain conditions. So, this will now take us into pain treatment, and I'm going to start during this presentation just speaking very broadly of our approach to pain, and in part two, which we're going to present several weeks from now, we're going to go into more of the specifics of psychological approaches to pain treatment. But I start by asking you guys to think, does pain serve any function or purpose? Well, if we take a step back and think about it, the answer to that question is yes. In its most primitive form, the primary function of pain is to serve as a warning sign. It alerts us to some sort of damage that's occurring in the body so that we can take action to prevent more harm from occurring to a particular part of our body. So, for example, if I'm grilling in my backyard, and if my hand touches my burner, if it touches the barbecue grill, I'm going to feel pain. That's going to be a warning sign to move my hand away from the grill, and that action of moving my hand away from the grill served a functional purpose. It minimized tissue damage to my body. So the pain itself served a functional purpose and was a warning sign. But is this true of all pain? Is all pain a warning sign that there's active damage occurring, and we need to do something right now to prevent more harm from occurring in our body? Well, the answer to that question is no. And this is where we start to get to the differences between two very broad categories of pain, acute pain and chronic pain. And so I'm going to expand a bit on some of the pieces that Christine was mentioning earlier when she was talking about the differences between acute and chronic pain. So in acute pain, the pain that we experience, the hurt that we have, is a sign of active harm occurring in the body. And engaging in some sort of avoidance behavior can actually minimize tissue damage. So that example of my hand touching the burner and my hand moving my hand away, that avoidance behavior served a functional purpose and it minimized damage in my body. But in the case of chronic pain, the pain is absolutely real, but it's not a sign of active harm occurring in the body that requires immediate intervention to prevent something more catastrophic from occurring. So let me expand upon that. So how does that apply in the case of something like sickle cell disease? Well, when people are between their crises and they have pain that's occurring at home, perhaps related to the damage that's already occurred in their body as a result of previous crises, they may have pain that's associated with that. But if they're not in the midst of a crisis, that pain is real, but it's not a sign that there's something damaging occurring in the body that requires some immediate action to prevent more harm from occurring. It may be the residual effects from damage that occurred previously in their body, but they're not in immediate harm's way. But this is an important differentiation to make, because if every time a person's experiencing pain, they interpret it as something acute, then what that's going to look like is always going to a hospital, always going to an ER, because they're always going to think that there's some sort of active damage occurring in the body. And so we want to try to help patients learn how to differentiate between those things, because particularly with sickle cell, we have a condition that has chronic pain and acute episodes. And so we don't want patients to ignore their pain that's chronic, but being able to differentiate that from the acute so that they know the different approaches to that management. But there are more differences than just this. In acute pain, the cause is oftentimes very clear, and it's oftentimes a very single cause for that acute pain. The example I gave of my hand touching the burner, right? We know why my hand is hurting, because it's touching a burner, and it's a single cause. But in chronic pain, the pain is oftentimes ambiguous, and it's multifactorial. So we can give a chronic pain condition a name. We can tell somebody, you've got sickle cell disease, you have fibromyalgia, you have neuropathy. And many times with our patients that have sickle cell disease, they don't have pain just associated with that one condition, but they have other comorbid pain conditions as well. They may have headache, they may have myofascial pain, they may have low back pain. And we may be able to identify even aspects of the back that are responsible for that pathology. You've got L4 radiculopathy. But even though we can give those conditions names, it doesn't mean that we can always explain why is it that if two people have the exact same condition, one person may have debilitating pain, but another person doesn't. That's part of the ambiguity of the condition. But what we also know about chronic pain is that it's multifactorial. Regardless of what the core cause of the pain is, we know that different substances, different stresses, different emotional states will all impact the overall experience of pain. And so that's the case certainly with chronic. It can play a role with acute, but much more so with chronic. And so paying attention to those variables becomes that much more important. And then we get to treatment course. Acute pain by definition goes away. Even the sickle cell crises, they have a defined end point where they do go away. In some cases, depending on the nature of the pain, immobilization may be essential for recovery, and medications are a critical part of the acute pain management. In chronic pain though, there's no fixed end point. We can't tell a person that if they do everything that we teach them to do, their pain will magically disappear. Immobilization may actually worsen a pain condition, particularly in those cases where somebody with sickle cell disease, if they have other comorbidities, being inactive, being immobile can actually worsen their overall physical pain and health due to atrophy of the muscles. And then with medications, we're now looking at a condition that doesn't have a fixed end point. So it's not that there's no role for medications. It's not necessarily that there's no role for drugs. Absolutely, pharmacology is important, but we have to have a lot more caution. We have to pay attention to some of the things that Christine mentioned. We have to be mindful of the fact that as we prescribe medications for a condition that doesn't have a fixed end point, there's a higher risk for things like physical dependence, psychological dependence, developing things like substance use disorder. So making sure that we actively address or actively consider these factors as medications are being prescribed. So if we look at these two things, acute pain and chronic pain, they're two completely different beasts. And we can't treat chronic pain episodes the same way we treat acute pain episodes. So we have to take a different approach to those. And so the approach that we usually take for managing chronic pain is the same approach we take with managing other chronic health conditions that don't have a cure, such as heart disease, diabetes, asthma. With these conditions, we don't have a fixed end point. We don't have a way to make them disappear. And so we take a management approach. And in the management approach, we focus on how to maximize quality of life, how to maximize functioning, even though there's a condition that does not have a treatment, a chronic condition that's going to be there. Often with general chronic pain, I draw a parallel with diabetes. In diabetes, we don't have a fixed end point, but that doesn't mean that a person with diabetes has to have poor quality of life. If they regulate their diet, if they check their blood sugars, if they exercise, take insulin or medications, monitor wounds, they can still have a very good quality of life. Now, sickle cell disease is a bit different than just diabetes. There's a higher level of intensity. There's a higher level of complexity that comes with sickle cell. There may be some patients who have a phenotype of sickle cell where diabetes is a parallel, but many of the cases that we see are more complex than that, where it's more of a progressive terminal disease like multiple sclerosis, cystic fibrosis, where we have to be more mindful of the fact that there is more damage that's occurring between these episodes and these crises, where there is progression with it, almost like a metastatic disease. But even though that's the case, even though it's a progressive terminal condition, we still want to approach this from a management perspective in terms of how do all the pieces fit together. And so with that, what we need to do is we need to embrace an interdisciplinary approach. There are several pieces that are necessary for that. The first is medical optimization, and that's looking at all aspects of a person's medical care and making sure that it's optimized. Is there a role for procedures? Looking at the medications. Is a person on too much medication, too little medication, or the most appropriate medication for their condition? And this is where a physician, nurse practitioner, physician's assistant comes into the picture. Physical reconditioning. When a person's living with pain, there's a tendency to not use that part of their body. There's a tendency to want to rest and just not move. Out of that, a fear of either the pain or a fear of worsening the condition. But that can actually lead to a worsening of the condition over time. So, reconditioning of the body, but not in a traditional orthopedic rehab perspective, but more of how to recondition the body, looking at core strengthening. And this is where physical therapies come in, but specific types of physical therapy such as pain-based physical therapy. And then the last component is behavioral and lifestyle modification. And this is where a pain psychologist such as myself would come in. As I mentioned before, we know that different substances, different stresses, different emotional states can influence the experience of pain. Lifestyle behaviors, the quality of sleep that a person gets, their sleep patterns, how they're managing stress, all of these things can influence the frequency of the sickle cell episodes. They're not the primary cause, but by better managing these things, we can have an influence on some of the factors that can influence some of those different crises. And by having that, that allows a person to have better quality of life. But it's not mind over matter. We can't eliminate these things altogether, but the more power to influence these things that we give patients, the more quality of life we're able to provide. And so, optimal pain management is a combination of all of these factors working together. Just like a diabetic may need multiple pieces to optimally manage their pain, or somebody with cystic fibrosis, multiple sclerosis, may need to work with their neurologist, work with their physical therapist, all those pieces to manage their chronic condition, so too, when we're looking at sickle cell diseases, we need to have a balance of all these working together. If we put all our eggs in one basket, and if a patient says, I just need to have the pharmacologic management, it would be the equivalent of a person with diabetes saying, if I just take my insulin, if I just get my meds optimized, then everything should be fine. I don't like the diet. Splenda doesn't taste like real sugar. And I hate exercising. Sweating is the worst thing in the world, so I'm not going to do that. But if you just give me the right meds, everything will work out. We know that that's not the case. And so it's the same thing with our management of sickle cell disease. We need to make sure we have all the pieces working together. Now, how much of each piece a patient needs varies. It varies on their phenotype. It varies on their contextual variables. But we know that we want to have all these components together to optimize their care. So that's a very broad overview of the role of psychology and psychological interventions in pain management. In part two, I'm going to speak more about what are the psychological treatments. How do we specifically address the windup of the body's nervous system, and how can we quiet that down? Christine talked about paradigm shift. We're going to talk about what are some of the strategies that we do to help patients accomplish that paradigm shift. What's the empirical data? What's the evidence that supports these? And how do we apply these in clinical settings? And so with that, I thank you very much for your time, and I think we may have five minutes for questions. When everybody asks questions all at once, it causes them to crash, so. Yes, and Lee, thank you for your question about the Suboxone versus methadone. We have used methadone in the past. And I think what I really wanna share with you guys during our next session is the huge success we've had with Suboxone with our patients. We've had patients who've been living in the hospital between 50% to like 75% of their lives with just intractable pain. And we've convinced them that buprenorphine could perhaps be the medication that would give them superior pain relief, while also talking about what's needed in terms of lifestyle modifications and medical management. But by and far, once I've made the switch to buprenorphine, we switched for six people over the last few years, and they've had tremendous improvements in analgesic relief, as well as function and quality of life. So I'll talk about the strategies and how to go about that for our next session. Lee, do you have another question? Yeah, I'd really like to hear that from Christine because we have people not necessarily with sickle cell but with chronic pain and that discussion to shift them from the regular opiate medicines to Suboxone is a very challenging discussion for them to wrap their heads around. So I look forward to hearing more about that. We have about 2 minutes left if anyone has any questions. I also want to bring your attention to the evaluation link that I included in the chat. Please make sure to complete that. This allows us to continue providing training NTA free of cost to our requesters. It allows our funders to know that this is definitely a need. I have a question about exit plans when it comes to long-term opiate therapy. It was touched on briefly. It's important to discuss what it would be like to get off of the opiates, but what exactly would that be like? Can you just give me a little bit more on that? Yes, and that's exactly what I'll be outlining in the next presentation. In brief, it includes potential goal and the tapers and the various strategies to get there and all the various pitfalls that we can have. I'll present some case studies as well. Okay, thank you. I also want to add that to help patients successfully come off of opiate medications, we want to make sure we're giving them other tools to manage their pain because, again, the pain is a very real entity. If we just pull people off of medications, whether it's sickle cell or Lee mentioned that he has other pain patients that you're working with as well, if we just pull people off of their medications but don't give them any other ways to manage their pain, then we're going to set them up for failure. We want to make sure that we're providing other resources, and that's where a lot of the behavioral interventions, which I'll talk about next time, can come in. Have we seen examples of acupuncture in concert with perhaps lower-level meds being effective? Some, a little bit. I've heard a lot more, honestly, about lifestyle and diet, actually. People have talked more about how eating sugar and fatty foods makes them feel good in the moment, but then they pay for it later with a crisis. Whereas if they eat way more vegetables and fruits and whole grains, they feel a lot better and they have less crises. Yeah, we definitely encourage complementary and alternative medicines for people to try. I have a question about OME. You talked about keeping an ideally OME under 90, but sometimes even going up to 200. I'm just not familiar with that term. The oral morphine equivalent. We talk about the oral morphine equivalent, and we do equal analgesic dosing conversions from Dilaudid and Methadone. That's not 90 doses of morphine? It'd be the equivalent of 90 milligrams of morphine in a day. Maybe somebody's on MS content 30 milligrams twice a day, so that's 60 OME already. Then they're taking an additional MS, like morphine, 10 milligrams three times a day. That would be an OME of 90. Thank you. Is there a specific reason why 90 and 200 are the two benchmarks? 90 is normally around the point where it's like if opioids are going to work for somebody, it should work at 90 or lower. When people start escalating above that and they're saying, I need a higher dose, it's not working, it's not working, then that's when the red flags go off in my head and I start thinking, I don't think this is actually going to work for you at all. When I get these 19, 20, 25-year-olds who come into my clinic, transition from pediatric care, and they say, I need higher doses, I need 25% more, I need 50% more, I need 100% more, then automatically I know the pattern that they're going to fall into. They're going to fall into the same pattern that my patients who are on 1,000 and 2,000 OME are falling into. Those same patients with 1,000 OME are coming to me and saying, I need more, Christine. Give me double. That's where I know I really need to get to know them really well and strategize on how to go down. All right. Thank you. Thank you. And then I had a question about the interaction between antihistamines and the opiates. I know you mentioned that you don't want to give them at the same time, you want to space them out. I think you said it was like 45 minutes. Yeah, yeah. They can be synergistic to give a patient a high. They give people a rush. And so that in and of itself is addicting and euphoric. So that is what we are trying to avoid. In addition, it's also, it can just be very dangerous. They can cause respiratory depression and over sedation together. There's one more question in the chat. And so I think this will be our last question. Does the pH of blood sugar affect pain? I don't think we have much evidence for that. So when people are drinking like special pH water, we don't encourage that. Okay, then. So I think we'll wrap up there. And we look forward to seeing everyone in part two, which will be the next session. Thank you, everyone. And part two, which will be on May 5th at the same time. All right, and I will be stopping the recording. And like I mentioned earlier, we'll send out via email the information to collect continuing education credits. Thank you all very much.

pain management

sickle cell disease

opioid use

Opioid Response Network

patient-reported outcomes

chronic pain

biopsychosocial approach

opioid risks

Suboxone

lifestyle modification