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Treatment Considerations for Transitional-age Yout ...
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Hello and welcome. I'm Tristan Grindow, Deputy Medical Director and Director of Education for the American Psychiatric Association. I'm pleased that you're joining us for today's SMI Advisor webinar, Treatment Considerations for Transitional Age Youth with Intellectual and Developmental Disabilities and Comorbid SMI. SMI Advisor, also known as the Clinical Support System for Serious Mental Illness, is an APA and SAMHSA initiative devoted to helping clinicians implement evidence-based care for those living with serious mental illness. Working with experts from across the SMI clinician community, our interdisciplinary effort has been designed to help you get the answers you need for your patients. Now I'd like to introduce you to the faculty for today's webinar, Rebecca McCloskey. Rebecca is a board-certified nurse practitioner in psychiatry and mental health. She works in private practice at Boston Psychiatric Care with individuals from across the lifespan. Prior to completing her master's degree, she worked as a pediatric nurse and case manager, taught undergraduate students, and conducted psychological research. Rebecca is a dedicated advocate and passionate team player with over 10 years of experience in mental health care. Rebecca, welcome to SMI Advisor and thank you for leading today's webinar. Thank you, Dr. Grandeau. I'm happy to be here with you all today. I want to let you know I have no relationship or conflicts of interest to disclose. And let's get started talking about treatment considerations for this population. At the end of the webinar, my hope is you'll be able to describe the population of traditional age youth who have both intellectual and developmental disabilities, as well as comorbid SMI or serious mental illness. We're going to discuss the treatment considerations specific to this population, review some of the common co-occurring medical conditions that can influence the choice of therapeutic agents, and highlight the existing evidence and guidelines available to support our clinical decision-making. So let's start off with a couple definitions. First, who are transitional age youth? So there's no exact definition of this population. We often consider it to be individuals from 16 to roughly 24 to 26 year olds. So that's about 10% of Americans or 30 million people. Particularly with the passage of the Affordable Care Act, that's really changed what this group looks like. Now individuals can have health coverage up to the age of 26, which really increases the access that this population has to health services. This is also a particularly unique time in people's lives. It's often an aging out process. People are changing in terms of their legal status. They go from minors to individuals able to make their own decisions. There's a lot of change in their housing. People who are living with family will often move on to independent living, college living, and group living situations. A big change in education. This is when individuals are aging out of the public school system and making decisions about what the next stage of their education looks like. It's also a big change in our medical care. Oftentimes these are individuals moving from pediatric care systems to adult care systems. There is a Department of Health and Human Services report about young adults transitioning with autism spectrum disorders. You can see the link in the slides there. The primary recommendations were that we need to use a coordinated and comprehensive approach. So creating linkages across these systems in order to sustain the care that individuals receive as they move across systems. Make sure that they continue to get strong family support as well as continuing to support the families of these individuals as they move across these systems. And overall that more data is needed to improve the outcomes for these individuals. As always in nursing, we talk about we want to start planning before discharge for discharge. And so it's true for this population. We want to start planning for the transition before it happens. So oftentimes individuals working in pediatric settings, you're going to want to start to think about, you know, as your kid is aging into the teen years, thinking about what transition is going to look like for them. That moves on to serious mental illness or SMI. So according to the National Institute for Mental Health, SMI is defined as shown here. It's a mental, behavioral, or emotional disorder that results in serious functional impairment that substantially interferes with or limits one or more major life activities. So let's unpack that definition. When we talk about mental illness, we're typically talking about diagnoses within the DSM-5. When we talk about how severe our illness is, we're talking about the degree of functional impairment. Now, this definition is used in lots of different ways. It's often used in some states as a determination for the administering of benefits, things like financial benefits. So we want to be really considerate that if someone is coming to us, we want to determine if they would meet this criteria that has a huge impact on what sort of benefits they can receive. But there's no really universally accepted screening process to determine if someone would meet this criteria. Some providers use a clinical interview, there's diagnostic batteries, and there's full neuropsych evaluation. So the way in which we can arrive at this diagnosis can really differ based on the clinician. So how many people might meet this criteria for serious mental illness? So it's 4.5% of all adults in the United States, the highest prevalence of which is in this population of transitional age adults. Also highest prevalence is individuals reporting two or more races. We want to think about some of the cultural considerations. All in all, that's 14 million total adults, or about 1 million transitional age youth. So it's a much larger population than people may appreciate. And so these are oftentimes transitional age, minority status individuals, so we want to think about some of the vulnerabilities of this population, as well as some of the strengths that these individuals can have. Moving on to IDD, or intellectual and developmental disabilities. These are conditions that are typically present at birth, and by definition, they must be present before adulthood. And again, they can affect huge aspects of individuals' lives. So their intellectual ability, adaptive behavior, or general development. Again, there's lots of different ways to come by this diagnosis. They can be diagnosed via neuropsychological screenings, genetic testing, and other diagnostic testing. We can find these diagnoses, again, in the DSM, when we think of things like autism spectrum disorders, ADHD, learning disabilities, movement disorders. We're also going to find some of these conditions in the ICD. So conditions like Fragile X, Rett syndrome, Down syndrome, Angelman syndrome, will be found in both these diagnostic systems. Typically with intellectual and developmental disabilities, they will involve the nervous system, the sensory system, and the metabolic system, and sometimes they can be degenerative in nature. Moving on to the prevalence of intellectual disabilities in particular. So this is about 1% of U.S. children. It's found more often in male children than in female. It's more prevalent in later childhood, and it's more prevalent in people identifying as non-Hispanic, Black, and Hispanic. That's about 750,000 children. We're predominantly identifying these children during the school years, which makes sense. This is the first time that we're really looking at young children's intellectual capacity, at least as defined by academic achievement. And it is something we need to consider when we look at the potential racial and socioeconomic biases inherent in the measures and screening tools we use to define intellectual ability and, therefore, intellectual disability. Moving on to developmental disabilities. So, again, these will occur in about 4% of U.S. children, oftentimes seen in male children, and there's many of these conditions that are more prevalent on the Y chromosome, so that would explain why we see them more frequently in male children. All in all, this is about 3 million children. It's considered more prevalent in earlier childhood, which, again, makes sense. This is when most children are achieving developmental milestones and when they're being screened for potential delays or disabilities. It's considered more prevalent in people identifying as non-Hispanic, White. And, again, we want to consider the racial and socioeconomic biases here. Oftentimes, there may be better access to maternal or prenatal care, to developmental screening tools, and that may occur in some populations more so than others. So, we just want to be sensitive when we're looking at these numbers to consider there may be individuals who are not captured by our screening tools, and this may represent a larger population than current statistics indicate. So, now let's talk about the overlap. How many individuals would have both an intellectual or developmental disability and a comorbid serious mental illness? There's very limited data available about the size of this population. Estimates range from anywhere from 30 to 70 percent of children with an intellectual and developmental disability may also have a comorbid serious mental illness. That's an estimated 1 to 2 million children in total, all of whom are going to need help growing into and surviving being transitional age adults. So, the estimate of 35 percent of all people with intellectual and developmental disabilities will experience some form of mental health issue. So, that's a large population. It's a very heterogeneous group. There are some shared characteristics, such as functional limitations, medical comorbidities, and oftentimes these are high utilizers of healthcare services across the lifespan, individuals who will interact with primary care, specialty care, and mental health care services. Transitional age is a uniquely vulnerable time for these, especially for this population. These are individuals moving towards autonomy, planning for their futures, exploring sexuality and relationships, and something we want to consider for this uniquely vulnerable population. The NADD is an advocacy group for people who have both intellectual and developmental disabilities as well as comorbid SMI. I would strongly recommend checking out their organization as they have wonderful resources and do a lot of policy work to support this population. So, how might we screen or look for these characteristics? Oftentimes, genetic testing is used in order to confirm certain syndromes, such as Down's Syndrome, Fragile X. With this population, we do want to consider the role of heredity in screening, including the reproductive status and the vulnerability of this population, especially in transitional age youth as they consider sexual relationships and marriage and family. We want them to be aware of the genetic risks that may occur based on their particular condition. Now, we also are looking for intellectual ability in the case of intellectual disability. So, oftentimes, neuropsychological tests will show people's strengths and challenges. There are many different screening batteries that we can use, Stanford-Binet, the WIC, and we also want to be screening for things like learning disabilities, things that may indicate even with what's considered average intellectual ability, a specific deficit or specific challenge in some domain of learning. There's also screeners for adaptive behavior, the Vineland being one, and that can help us determine the severity or the degree of functional impairment. Again, going back to the definition of serious mental illness, we want to know how people are impacted, as well as the severity, and that can help them get better support. With developmental disabilities, we need to be measuring and screening developmental progress. So, screeners like the MCHAT can help us determine diagnoses like autism, as well as different developmental screeners like Ages and Stages Questionnaire. So, too, we can use diagnostic screeners specific to the nature of the SMI. So, looking at screeners like the Mood Disorders Questionnaire, the MDQ, the Patient Health Questionnaire, or PHQ for depression can all help us better understand the nature of the mental illness the individual might be experiencing. And again, the degree of the functional impairment. So, this can help us not only with determining diagnoses, but helping with treatment planning, accessing services, as well as measuring clients' progress as they move forward in therapy. Examples of this are the Barclays Screening and the HUDAS. So, the NADD, as previously mentioned, has created a specific screening booklet, so a screening companion to the DSM called the DM-ID-2. So, what this manual has done is actually adapt some of the DSM criteria to make it more specific and help it be better utilized for individuals who fall into this population. So, it's changing some of the criteria to better fit the way these conditions may present in people who have both IBD and comorbid SMI. Moving on to treatment considerations. So, first, we want to consider some medical legal considerations, the first of which is guardianship. So, sometimes individuals in the transitional age are not their own guardian. Despite having aged out of the minority system, they're still being held in the care of an adult, whether that's a family member or a legally appointed guardian. This really calls into question medical decision-making. Is this individual capable of making their own medical decisions, or do they need this guardianship? This can extend to things like the administering of benefits, as well as just kind of basic treatment decisions, whether or not to come to appointments, how to manage the sort of delivery of medications, who's picking them up at the pharmacy, who's ensuring the individual takes them. And it's something we want to consider in our work with this population. We want to help these individuals move towards autonomy, and we also want to prioritize their safety. As a result, you know, unfortunately, some of these individuals are at a higher risk for exploitation, particularly when it comes to financial exploitation. So, individuals who are in guardianship, we want to make sure we're assessing the nature of that guardianship. Is this a safe and sustainable situation? These are also individuals who are protected under the law when it comes to abuse reporting. So, we want to be really mindful that this is a protected group of individuals, and there may be different reporting requirements by states for us as healthcare providers. Another medical legal consideration is consent. So, again, for individuals who are in guardianship, they may not be able to provide legal consent to their care. It may be the guardian who provides this consent. However, you know, our ethical requirements is that we do provide informed consent for all the parties who are involved. We want to make sure we do that at an appropriate level of understanding for each individual. We want to make sure we know who and how we're obtaining that consent and documenting it accordingly. There is, you know, considerations of active versus passive consent. So, having an individual provide full active consent is always preferred, but there are indications that when safety is at risk, sometimes we need to assume a certain amount of passive consent, particularly for individuals who may not be able to verbally provide consent or may not understand the need for care. Again, we're thinking of the ethical dilemma of autonomy versus beneficence, which is pretty common in our work and something always to be considered, especially with vulnerable populations. One of the other considerations here is adherence. So, how likely is someone to adhere with our treatment plan or, as some language would be, compliant with the treatment plan? And I find that this is really affected by the settings in which people are receiving care. So, oftentimes, these individuals may be living in home settings, whether that's with family group homes or in independent living. Again, we need to think about, you know, how things like basic needs may influence their ability to adhere to our treatment plan. Can they access their medication? Who gives them the medicine? How is it stored? You know, are there systems in place to help them remember to take medication to afford it, you know, to be able to get to the drugstore? Things like access to care in terms of insurance care and benefits. These are individuals who can benefit from certain amounts of case management to ensure their access to care. I've certainly worked with individuals who've benefited a lot from visiting nurse services to ensure their access and adherence to medication. Again, the sustainability of our care. If individuals can't afford the medication, they can't afford the copays to come see us, if they don't have transportation, then even the best treatment plan is going to be hampered by these issues. So, just things to consider in working with all populations, but particularly this one. Leads us into different treatment settings. So, you know, the goal in treatment is always going to be the least restrictive setting with a consideration for safety, the caregiver capacity, and the available resources. So, we want to consider what the patient and the family desires in terms of care settings. Historically, this has been a very isolated population living in congregate settings. Over the last 50 years, this has changed drastically with community-based health movements. We are seeing more and more of these individuals remaining in homes and in communities. There are still individuals living in residential and congregate facilities. Sometimes we'll even meet these individuals on our inpatient services. So, we just really want to consider, you know, the settings that we're providing treatment in. Oftentimes, on the community, these could be outpatient settings, primary care offices, nursing homes, or we may find them as we're contracted to work with them in these residential facilities. We also want to consider the patient's status in accessing their care. Is this voluntary or involuntary? Again, these go back to the concepts of guardianship, of consent. If we are considering the need for something like involuntary commitment, then we want to consider the role of containment, the surveillance for safety versus the risk of traumatization when we're considering whether or not to engage someone in involuntary care. Now, this is true for all populations, but particularly considering some of these individuals may not understand or be able to understand the need for involuntary care, there's a higher risk for traumatization. So, there's a lot of bonus on us to make sure we're, as healthcare providers, being as clear and compassionate in the delivery of care, make sure it's understood why involuntary care may need to be considered. Again, we're going to need to keep in mind ideas like guardianship, you know, documentation for finances, benefit applications, considerations of capacity, especially when working in forensic settings. And ultimately, just we want to be sure to always try to explain the situation to the patient at whatever level they're going to understand, based on not only their diagnoses and disease state, but based on the situation in which we're providing care. Let's talk a little bit about adjunctive therapy. So, there's lots of different ways of approaching treatment and lots of non-pharmacologic supports to consider. So, things like physical and occupational therapies can be really effective, speech and language therapies. You know, there's evidence behind applied behavioral analysis. There's evidence these individuals can benefit from traditional psychotherapy as well as things like animal therapy, equine therapy. There's a lot of good research behind family and caregiver training in particular in this population and increasing the support and the education for the caregivers as well as some complementary and alternative medicine, things like massage, music therapy. Most importantly, we want to build a support network. We want to coordinate across systems. This is where, again, case management can be really beneficial for this population and again, ensuring we're creating a collaborative team for these individuals. Let's move on to the considerations for psychopharmacology in particular. Oftentimes, in this population, we're talking about on-label versus off-label prescribing. There are some FDA approvals for medications in this population. For instance, risperidone and aripiprazole have been approved for the use of managing irritability in autism, so there is controversy around whether or not there's a therapeutic benefit in this population or if we're using these medications as a chemical restraint. This is something we should consider when we're approaching the use of these medications. There's a lot of off-label prescribing that's going on, so things that are not approved by the FDA but could mechanistically help. Examples of this are using FSRIs in the context of repetitive behavior, using stimulants if there's issues with an attention, etc. Always making sure we inform patients and families when we're using medications off-label if we're choosing to do so and always trying to practice evidence-based care if we are choosing to go off-label. When it comes to the targets for psychopharmacology, we want to prioritize unsafe behavior, so things like impulsivity, self-injurious behavior, aggression, anger. We want to manage the serious mental illness, so mood and psychotic disorders, attention and impulse control disorders, as well as repetitive behaviors. We need to think a lot about co-occurring medical conditions in this population, as well as the way in which psychiatric meds can interact with the conditions and the treatment. This population is at a higher risk for side effects, in part because there are many co-occurring medical issues, so we need to be really judicious about our choices in medication, balancing not only our therapeutic targets as well as the co-occurring medical conditions. Let's talk about these common co-occurring medical conditions in this population. First being sensory conditions. There are higher prevalence of visual impairments in some of these individuals in some of these particular conditions. There's some evidence that both the SSRI class and second-generation antipsychotics can increase interocular pressure. If you have an individual who's at risk for acute-angle glaucoma, then that's something you want to work with their ophthalmologist and make sure that you're monitoring that if these are classes of medications you're considering using. There's also concern for auditory impairment, not only in terms of understanding the information presented, so two in visual impairments if you're presenting information in a written form, but there's also consideration if the auditory impairment or the deafness is congenital. As you may know, ears and kidneys form around the same time in development, and so if you're thinking of something like lithium for an individual with congenital deafness, you really want to make sure you're checking their renal clearance and their renal impairment before you start the medication. Speech impairments, in particular, vocal tics. These are individuals you want to be really cautious about using stimulants. The stimulants have been shown to worsen or unmask certain tics, so something to consider if you're in a space with an individual who appears to have a vocal tic and is recording in attention. You may want to consider other options or just be very cautious with the use of stimulants. There's also the consideration around sensory integration or sensory processing disorders. Oftentimes in individuals on the autism spectrum, issues with sensory integration may drive behavioral concerns, and so we want to be really mindful, and again, this would be a good time to include people like occupational therapists in the conversation. If we're seeing disruptive or unsafe behaviors, we want to get to the root of what's causing that behavior. We can consider sensory integration in the work with these other specialists. Moving on to neurologic conditions, the first of which is seizure disorders, so there's a lot of overlap between autism spectrum disorders and seizure disorders, and having a pre-existing seizure disorder can affect our behavior and our cognitive abilities, so working again with neurology is going to be very important in this population. There's some evidence that some of the antiepileptics can cause psychotic symptoms, so if you're treating someone with a seizure disorder on an antiepileptic who's presenting with psychotic symptoms, you really want to be getting a thorough history to determine when those symptoms presented and getting to know the antiepileptic that they're on to see if there's a possible correlation there, and in addition, we want to be really mindful about the medications that we use. For instance, second-generation antipsychotics, Welbutrin, are all known to lower the seizure threshold, so here we again, thinking about medications like risperidone and aripiprazole that have been approved for use in autism, if you have a young person who has both an autism spectrum disorder and a seizure disorder, you want to be really cautious about using something like risperidone. Moving on to movement disorders, so we want to consider, is this a movement disorder? Individuals with Fragile X are known to have an ataxia syndrome. Individuals with Chiari malformations can have some movement and gait disorders associated with that condition. Now, if you're treating someone with one of these medical conditions with an antipsychotic, you need to be really cautious about differentiating a movement disorder inherent in their medical condition versus a side effect of the medication. So, too, thinking of things like tremors with Depakote and lithium, that's just a consideration in monitoring what is a side effect versus what is a feature of their medical condition. Many individuals with hydrocephalus may come across your, you may see them in your care settings, so you want to be cautious. This is a condition that is prone to increased intracranial pressure. So, if you have a medication that can affect blood pressure and intracranial pressure, you want to be really cautious. Indications that a shunt might be failing in the case of hydrocephalus are going to be personality changes and gait issues. So, again, you want to think about, is this an effect of our medication, an effect of a pre-existing medical condition, or is this personality change a sign or symptom of their serious mental illness? All things to consider in this population. We also want to think about head injuries. So, individuals who engage in headbanging, a self-injurious behavior, a behavior that can be common in individuals with intellectual disabilities, are at a higher risk for traumatic brain injury. And so, we want to be really cautious about providing screening and interventions, including behavioral interventions like helmet wearing, distraction, as well as just being mindful that there can be mood and behavioral issues associated with the head injury that we don't want to state as a serious mental illness if it is the sequelae of an injury. A common intellectual and developmental disability is cerebral palsy, which is actually a birth injury with brain involvement. And that can manifest as mood and behavioral issues depending on the site and the mechanism of injury. So, we want to be cautious when we're differentiating developmental delays from cerebral palsy to ensure we really understand the root cause of the presentation. We also want to consider dementia. Individuals are living longer and longer, and there's a correlation between Down syndrome and dementia. And so, we want to be cautious about the way we screen for cognitive decline in this population, correcting for the baseline intellectual ability, and then be realistic about our expectation when it comes to treatment. So, in terms of preserving cognitive function, slowing decline, we want to make sure we're clear with the individual as well as with the care providers of what our expectation is for treatment. Looking at cardiopulmonary conditions. So, some of these individuals are known to have cardiovascular disease that's associated with their medical conditions, some of which are congenital malformations or arrhythmias. So, in that case, we want to be really cautious about using things like stimulants, Welbutrin, SNRIs, tricyclic antidepressants. All of these can cause increased blood pressure, as well as sudden cardiac death. So, we want to be cautious about screening individuals for family histories of sudden cardiac death, as well as screening them for congenital, as well as acquired issues like hypertension. This is also an indication of a time to screen for things like Wolff-Parkinson-White syndrome and QT prolongation. If you're thinking of using certain SSRIs, Welbutrin, Visceral, or Hydroxyzine, which gets very commonly used, can cause QT prolongation in doses over 100 milligrams. That is something to be cognizant of in this medically complex population. In terms of pulmonary conditions, we also want to consider sleep apnea. Sleep apnea is particularly common in Down syndrome, and there's a risk between using sedatives for individuals with obstructive sleep apnea. So, you want to be cautious about screening for this, making sure individuals have access to things like CPAPs and BiPAPs if they have diagnosed sleep apnea, and just being really mindful if we're choosing to use a sedative in an individual with sleep apnea. There's also concern for conditions like reactive airways. So, for individuals who have co-occurring asthma, which is fairly common in individuals with some of these intellectual and developmental disabilities, being cautious about using things like data blockers, as that's known to increase the risk for patients with asthma. Many individuals who have severe allergic reactions in this population may need to have steroids for their asthma or allergic reactions, and there is a risk for activation associated with steroid use, prednisone in particular. Some individuals who are exposed to prednisone may develop psychotic features. So, again, when we're distinguishing what is being driven by the co-occurring medical condition or the treatment for that medical condition, distinguishing that from a serious mental illness really requires us to put our detective hat on and get a really thorough history to understand the presentation. Moving on to metabolic conditions. So, we want to think about individuals who have dietary issues, such as allergies or intolerances, one of which is PKU, which is an inability to break down phenylalanine. So, we want to be really cautious about aspartame or products that may contain aspartame in this population. So, there's a risk for things like the cross-contamination of medications. I can tell you I have a client who, I had a client who had a very severe lactose allergy, who we had to be really cautious about where we got her Lamictal from, because if she had any exposure to lactose as a result of where the factory, the factory that the medication was made in, it could be very severe. So, something to think about in this population, as many of them are more prone to allergies or certain dietary intolerances. For instance, there's a higher risk of celiac disease in individuals with Down syndrome. So, you just want to be cautious about where the medications come from, and if we're seeing people develop certain allergic reactions, being able to kind of tease that apart becomes important. We also want to consider nutritional deficits. So, some of our individuals on the autism spectrum have really severe sensory sensitivities when it comes to food. As a result, they may be limited in some of their nutrients, and that may present as things like major depression. And so, we want to, again, get a thorough history, do a really close diagnostic. If we're thinking about individuals with PICA or eating non-food items, particularly if you find someone eating dirt, you want to be really concerned about something like an iron-deficient anemia, because the body is trying to get some nutrients that it's missing. So, again, just being really thorough and considering the history that we're taking, trying to understand what behaviors are being driven by the co-occurring medical issues, being driven by the serious mental illness, or being driven by the intellectual or developmental disability. So, there's also a condition known as Hirschsprung's disease that is pretty common in Down syndrome as well as Wardenburg syndrome. And Hirschsprung's disease presents a slow GI motility. So, we want to think about things that have an anticholinergic effect, medications that are prone to constipating individuals. Individuals with Hirschsprung's are already prone to this. So, it's another consideration to think about when you see something like Down syndrome on someone's medical list, trying to understand if Hirschsprung's disease is part of the picture. We also want to think about things like just medication clearance. If they're having slow GI motility, it also means that medications are in the system for longer. So, we want to be more mindful when we're seeing side effects, kind of understanding the pathophysiology behind that. There's also a high prevalence of obesity in individuals who have certain conditions like Prader-Willi and Kline-Levin syndrome. And these are individuals we want to be really cautious about medications that are known to cause weight gain. So, things like second-generation antipsychotics, Depakote, some SSRIs. So, we want to be really cautious about, you know, doing our metabolic monitoring, doing good education, and thinking about behavioral interventions when it comes to individuals more prone to obesity. And then other medical conditions that are commonly co-occurring, we would want to consider hypothyroidism. Congenital hypothyroidism can cause intellectual disabilities. We often screen newborns for this condition. And so, you have someone who, let's say they present with both bipolar disorder and congenital hypothyroidism, you're going to want to be really cautious about using something like lithium first line, knowing that lithium can also cause thyroid issues. So, things to consider. There's also reproductive issues that are unique to some of the individuals in this population. Fragile X has an associated ovarian insufficiency. There's often reduced fertility in this population, particularly the fragile X population. We want to think about, again, things like medications with teratogenic effects, Depakote, some of the benzodiazepines, particularly if you have a transitional-age youth who might be choosing to engage in sexual behavior, or even a transitional-age youth who's at risk for sexual exploitation. We want to be really mindful about the education they have, their capacity for consent, thinking about the effects of birth control. If you have an individual who's on Depo-Provera or oral contraceptives, who you're using an antiepileptic, they need to understand, and their caregiver needs to understand the antiepileptic may decrease the efficacy of that birth control. And so, that's something we want to be really good about educating patients and families about. Other things to consider are elimination issues. So, some individuals with intellectual disabilities may have elimination disorders. We also want to consider, is the elimination disorder due to a medical issue? For instance, constipation with Hirschsprung, as I previously mentioned, is it a side effect of the medication? Is it a part of the serious mental illness? Is this disorganized behavior indication of a psychotic illness, or is it a feature of another consideration? So, again, just things to keep in mind. Lastly, just congenital malformations, particularly genitourinary ones. If there's individuals, like previously mentioned, who might have renal issues, you want to be cautious about lithium, stimulants, SNRIs. If you have individuals who have any urethral or reflux issues, you want to be cautious about medication clearance, looking at risk for urinary tract infections, the way that those can present with psychiatric symptoms as well. There are individuals who have physical malformations associated with their intellectual disability, so things like hypertonia, spasticity, mobility issues. You want to be cautious about things like pain control. So, for individuals who are prone to pain, they may be using a lot of NSAIDs. If they're also taking an SSRI, you want to make sure you're mindful about blood clotting issues. Individuals who are on more sedating pain medications who are also taking medicines for anxiety, again, you want to be really cautious about drug-drug interactions. Same is true for sleep medication. So, all things to consider in prescribing for this population, the ways in which the medical issues may interact with some of the things we would choose to do in the treatment for the mental illness. So, let's talk a little bit about the research that's available in this population, as well as some of the clinical practice guidelines that can help us in terms of approaching care. So, first, looking at Cochrane Review. I went through the Cochrane Review to just look for different articles that may help guide our treatment pathways, the first, all of which are linked here. The first is a review looking at the use of clozapine for individuals with intellectual disabilities and psychosis. As you see, there is no compelling evidence found in this review, and the takeaway was that more research is needed. The second, looking at the use of risperidone and amphetamine for ADHD in people with intellectual disabilities, same conclusion, not enough evidence, more research is needed. There is another review looking at the use of certain psychopharmacology interventions for self-injurious behavior. What this took away from the review is there's limited research. There might be some support for the use of clomipramine or naltrexone, but again, more research is needed. Looking at SMI Advisor, there are two great resources, one of which is the Emerging Best Practices for People with Intellectual and Developmental Disabilities. The recommendations from this webinar were to utilize an interdisciplinary approach, including the biopsychosocial model. This webinar is predominantly or was predominantly focused on the psychotherapeutic aspect and really encourages us that these individuals can benefit from traditional psychotherapy and that psychotherapists should maintain their principles but just adapt the approaches by which they apply their psychotherapeutic interventions. The second SMI Advisor I would encourage you to take a look at if you're interested in this population is some guidelines for the inappropriate use of antipsychotics, particularly for individuals with intellectual and developmental disabilities in the community. Again, this goes back to the controversy around using second-generation antipsychotics. We should be using them to treat a co-occurring serious mental illness, not using them for chemical restraint. Things to consider. All in all, more research is needed for care guidelines in this population. Here are the links to a couple of great resources, one of which is the Journal of Mental Health Research in Intellectual Disabilities, the National Institute for Child Health and Development, the NIMH, APA, and the SMI Advisor website. That is all I have for you today. Thank you so much for spending the time with me and I look forward to hearing your questions.
Video Summary
In this video, Rebecca McCloskey, a board-certified nurse practitioner in psychiatry and mental health, discusses treatment considerations for transitional age youth with intellectual and developmental disabilities (IDD) and comorbid serious mental illness (SMI). She defines transitional age youth as individuals from 16 to 24-26 years old, accounting for about 30 million Americans. McCloskey emphasizes that this is a unique time in individuals' lives as they experience changes in legal status, housing, education, and healthcare. She mentions a Department of Health and Human Services report that highlights the need for a coordinated and comprehensive approach to support transitional age youth with IDD and SMI. McCloskey discusses the prevalence of SMI and IDD, as well as their overlap, estimating that 30-70% of children with IDD may also have comorbid SMI. She emphasizes the importance of screening and assessments to accurately diagnose and treat individuals in this population. McCloskey discusses medical legal considerations, such as guardianship and consent, and emphasizes the need for a supportive network and coordinated care. She also highlights the role of adjunctive therapies and the considerations for psychopharmacology in this population. McCloskey explains the common comorbid medical conditions, such as sensory conditions, neurologic conditions, movement disorders, cardiopulmonary conditions, metabolic conditions, reproductive issues, elimination disorders, and congenital malformations. She stresses the importance of considering these conditions in treatment planning and medication management. Lastly, McCloskey mentions the limited research available in this population and provides resources for further information, including the Journal of Mental Health Research in Intellectual Disabilities, the National Institute for Child Health and Development, APA, NIMH, and the SMI Advisor website.
Keywords
transitional age youth
intellectual and developmental disabilities
serious mental illness
comorbid conditions
medical legal considerations
adjunctive therapies
psychopharmacology
Funding for SMI Adviser was made possible by Grant No. SM080818 from SAMHSA of the U.S. Department of Health and Human Services (HHS). The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement by, SAMHSA/HHS or the U.S. Government.
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