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[Music] so our next speaker is a link who she's a med peds nephrologist I've been working with her closely what she's going to talk about are the challenges of managing the young adult patient this is not necessarily talking about pediatrics that's not what I asked her to address it's really in the challenges that we have in that 18 to 25 year old and she's going to talk to you about what that's all about dr. goo thanks I want to think that for inviting me to speak today and this is going to be a interactive talk I don't have any scaring infections but I might have a scary population that is not your favorite and your clinic to talk about this work so adolescence and young adulthood how many of you remember your adolescence and what you were like yeah I thought I remember it pretty well I went home this weekend I asked my mom you know how was I as an adolescent I wasn't too bad right and she smirked and she rolled her eyes then she said honey you're lucky to be alive and asking this question I had a very different perception of my adolescence but probably for a very good reason oh sorry if you look at gray matter maturation it really happens over a life span as you're developing and what I really like about this figure is you can see that the blue represents gray matter it doesn't really put an arrow as to where you get to this maximally blue part which is when you you need all your reasoning and logical skills and so maturation really happens at a different pace for adolescents and young adults thought everyone is the same I think really to describe the scope the problem this is still remains one of the best papers that have looked at this issue and so this paper really wanted to look at what our graph outcome is looking like and lessons versus the rest of the transplant population that you might be taken care of it's a little bit of an odor paper from 2010 but looked at 170,000 kidney only transplants these are first-time transplants that occurred between 1987 2010 at corn gin OPTN the predictor here is age at transplantation the outcome was graft failure and there was a lot of graph failure and his cohort about 1/3 went into graph failure and 15% died to show you some basic characteristics of this cohort the mean aged cohort is actually 38 it's a racially and ethnically diverse population that's representative of our patients in United States about a third actually have private insurance what what I'm showing you here is on the x-axis is the age at transplant and on the y-axis is your risk of graft failure and everyone is being compared to an 18 year old so you can see that the highest risk for graph failure is actually in the 14 to 16 year old population that's where it is graph Peaks and while the living donor transplants actually do a little bit better than diseased donor transplants which is to be expected and private insurance does a little bit better than government based insurance adolescence is a high-risk period for transplantation then what I really like about this paper is they went on to look at 1 3 5 and 10-year follow-up so again on your x-axis you're looking at age at transplantation on a y-axis is graph survival you're again comparing everyone to an 18-year year old you at the time of transplantation you'll have to do a little bit of math but at 1 year the survival is again lowest in the 14 to 16 year old period at 3 years of follow-up graph survival is lowest again for that 14 to 16 year old period at 5 years you can see that it gets worse so a 5 years of follow-up we're talking about patients who are now between the ages of 19 and 21 if you do the math and in that 10 yrs follow-up you can see that grafters first survival for those who are transplanted between 14 and 16 years of age is actually dismal right it's not what we want to see in this population then I went on to add some racial differences and these are disease donor transplants but overall you can see that the trends are the same African American recipients do do worse in terms of grass survival again it's that 14 to 16 year old age group where patients are receiving their first transplantation that seems to have the highest risk of grass survival over time in terms of graph half-life's they went on to look at based on your age of transplantation what is the half-life of your grass survival you can see that it's a little bit better again for living compared to diseased donors but it's not very good for those people who were transplanted at a young age this is not what we want to see for someone who is between 14 and 16 years just time of ESRD onset and it's likely to go on to need one two if not three kidney transplants over their lifetime and problem with this age group and it's not a problem it's great they survive great they're not the typical 65 year old who might get one transplant and they won't need a second one these patients are going to pull on underneath multiple transplants during their lifetime and so graft survival should really be a priority well here's part of the problem so again on this is you know state I know that we're looking at on the x-axis you're looking at yours post transplant on the y-axis you're looking at losses to follow up and we have this figure has actually divided everyone by the age at transplantation and you can see that the greatest losses to follow up are those who are actually transplanted between 12 and 17 years of age compared to the blue line which is those who are transplanted between 0 to 5 years of age probably because those patients have very lovely human beings known as parents who make sure that their kids come to follow up and then the second highest risk is those who are over the age of 18 so who sees these young adult patients and that you know in Pediatrics we certainly see these patients we follow them until 18 or 21 years of age and then we end up transferring them so you can see that based on your age at transplant as you get older and older the portion of patients that are not being followed by the transplant center which is the blue is less and less and the proportion that are being followed by other provider community nephrologist for example the Green Party gets larger and larger so this is who's really taking care of these patients and who really needs to know how to take care of these patients today we can improve our graph survival outcomes so I think I've described a scope of the problem I want to share with you a little bit about what who who these young adults with kidney transplants actually look like and understanding who they are is really critically important to making that connection and making sure that you're able to provide appropriate care for your young adult patient so the best paper that I can find is actually unfortunately out of the United Kingdom now sure we do a little bit later why I chose this paper but this paper looks at psychosocial health and lifestyle behaviors in a young adult population who is receiving we know replacement therapy they surveyed patients you can see that the mean age of these patients sorry the median is 25 years spanning from 21 to 28 years they're from all over England about half of them are still actually being managed in adult transplant centers even though there are less than 20 years of age and about 64% of them actually have access to a transition clinic centre which I would say is higher than the proportion patients who have access to a transition clinic in the United States you can see that this is a duration since we know placement therapy start the median duration is 6 years this is really just show you survey responders ever had transplants and majority of patients who are responding to this survey are actually people who have had a transplant and not surprising a great proportion of this cohort actually had a failed transplant 27% so I really like about this paper to orient you is that they actually compare the responses of the young adults who have had been a replacement therapy either a transplant or dialysis compared to the general population and I'll share with you a couple of interesting things about this first of all the young adult population that had we that has had we know placement therapy is 15 times more likely to be unable to work and this arrow has moved a little bit if when they do work you're mostly in cells and customer service occupations and you can see that that's statistically significantly only half of them really working full-time and that's much less than a general yon adult population who is not receiving me no replacement therapy and then they asked him about their health and the health was actually rated as very good that fair bad versus very bad ending in Sita in the yellow I was receiving we know placement therapy 15% said that her health was very bad compared to 33% in the general population and that's a six-fold difference that you're actually looking at a number of the young adults were reporting that it work they were very likely to have to have reduced our usual activities in the last two weeks not surprisingly they have a higher prevalence of hypertension and diabetes but the proportion that are actually married and living with a partner is slightly lower in an adult population receiving renal replacement therapy but look at how many are actually still living with their parents or their legal guardian so this is really the young adult population and you're actually taken care of they queried a little bit about smoking alcohol and drugs and I don't know what they doing I keenum but they're doing a fairly good job it looks like if you look at the rates of self-reported smoking alcohol and drugs it's actually lower in a young adult population who is receiving renal replacement therapy compared to that in the general population and yet they are still experimenting they're trying marijuana they are trying alcohol they are trying smoking so they do explore these things but the sustained activity at least by self-report does not seem to be higher than that the general young adult population so I think part of really understanding how to take care of young adults is really understanding what their priorities are I really like this paper as we move as a research field more towards patient-centered outcomes I think more and more of these things are important to really understand so this is a survey that was given to children and young adults who actually have ESRD compared and and are comparing sort of outcomes that are actually important for the parents versus children so it's a very busy figure and I'll walk you through it but first I want to show you all the gray bubbles our priorities for children and adolescents so they really want to feel normal they want they fear invasive treatments they want to remain hopeful and if you look at the priorities these are from top to bottom from most important to less important survival is important the following survival it's sports that's really important to them and fatigue it's not the themes that you and I are necessarily concerned about in clinic these are their priorities and I think it's part of that idea that they really want to feel normal then if you look at what was really important to parents these are the white bubbles with your parents only it's protecting the health of their child very reasonable setting realistic expectations minimizing physical discomfort British child and then strengthening the resilience for daily challenges then if you look at the black bubbles they're sort of shared priorities we're concerns overwhelming family burden is one of them imminent threats to life seeking control over current health control is a huge issue for both parents and children or adolescents prognostic uncertainty and concern for limited opportunities lastly if we look at the top outcomes for parents or caregivers you can see it's the things that you and I as providers probably care a lot about Kenny function survival infections anaemia but these are not what the children and young adults and adolescents are really concerned about so now I want to shift gears a little bit and talk about some of the clinical management dilemmas that I see during a transition so now I'm going to have an interactive part to this I have some scenarios here so seventeen-year-old when in happier post transplant cracking is stable doing relatively well body surface area is one point seven on triple immunosuppression I'm pulled an audience and asked what is the appropriate cell sub dose for this patient how many of you would say a gram twice knee okay 750 twice a day okay a few 500 twice to be a couple more all right anyone do more than one gram twice a day all right now tell you pediatric protocol 650 milligrams meter squared per day the bike you 12 comes out to about 1150 around it a little bit probably treat with 750 500 but for some adult practitioners when they transition it's not totally clear what you do with this patient had this patient been transplanted as a dope perhaps they would have started with a different dose the young adult population is really one of the most under study populations right pediatricians study children adult researchers study older adults but the 18 to 30 year old transition period is one where there is really no great evidence it's not entirely clear what you should be doing with yourself dosing course there's multiple risk factors to consider but based on protocol the protocols don't necessarily always align all right take another quick example over here I'm gonna ask 21 year old comes to your clinic kidney transplant patient been transplanted three years LDL fasting is 150 how many of you would start a statin it's been 150 for six months you've tried you know diet exercise low fat diet etc how many of you would start a statin a proportion of you how many of you would just dietary counseling okay and so how many of you would not check an LDL so you avoid a problem if you don't know it can't be a problem it's my entirely clear rate so key legal guidelines cured kidney transplant Mississippi I'm pretty outdated was last released in 2009 says a rare adult LDL is over a hundred you treat you reduce to audio to less than 100 um lipid guidelines released by PD go 2013 were updated no kidney transplant recipients everyone gets a statin citizen if you're a child less than 18 years of age they suggested that statins or satin combinations actually not be initiated look at pediatric guidelines pediatric guidelines and lipid management is very complicated so first you have to look at whether or not you're special risk condition or a high risk condition of which I would point out to you that post Reno transplant a high-risk condition once you figure out that you have a high-risk condition then there are all these algorithms as to whether or not you treat with a statin so first you would repeat you would do what's called a child's to diet which is a low-fat diet and try to do dietary modification and then if persistently over 190 you would initiate a statin 160 to 190 you look for at least one high level risk factor which this hypothetical patient I gave you would have or to moderate level risk factors you would start a statin 130 to 160 you need to high level risk factors which we don't have in kidney transplantation or you have one high level plus to moderate factors you initiated statin but a point being that I'm not sure that a patient is really that different between the age of 17 and 18 and what to do with these patients often is not clear I'm not sure that we know what statin therapy for the next forty years between eighteen and you know 55 or 60 really means for that patient next certainly there are conditions are specific to pediatric we know disease that may be a lot less familiar to adult providers that may actually make these patients more challenging to manage then we've leave a little bit of evidence and talk about some of the cultural challenges in a potion management of the adult patient I think there's a lot of cultural differences in how pediatricians and adult providers actually approach patients right miss clinic appointments my adult clinic might call ones to try to reschedule they might call twice but if they don't reschedule it's up to the patient to reschedule pediatric providers will often call so-called parent to try to find a kid make sure they're actually scheduled for follow-up so you can see easily why the losses of follow-up are much higher in the young adult population insurance difficulties oftentimes these young adults are not actually able to navigate through their insurance challenges and yet as an adult patient they may not have access to the same social worker and transplant team that they had as pediatric patients in addition time allocated for following my doubt clinic I have a transition clinic so I have 45 minutes per patient but that doesn't always happen so in regular adult clinic we have 15 to 20 minutes per patient that's really only sufficient time to deal with the medical issues that are most urgent to manage there isn't sufficient time to ask you know whether or not they're necessarily always a here engineer medications what their challenges are what their insurance status is all these things that you need to do in order to maintain good follow-up medication adherence adults are self responsible for medication parents again the beauty of children especially younger children is that the parents can often oversee adherence and ensure that the medications are taken I'm gonna ask you when you see your young adult patient come with a parent and you ask them how they're feeling what is the most common response that you get fine yeah I get five or I get how are you feeling Johnny and Johnny looks at mom and a mom says tell them how you're feeling then Johnny says how am I feeling this is a very common scenario I think often times you know we depend on pairings as pediatricians to really importance but that doesn't really will allow the adolescent a young adult to have the opportunity to really take control of their own care and surely mom does not know better than the patient as to how they're actually feeling but oftentimes during that transition young adult really isn't capable of voicing difficulties concerns things that they really should bring up during office visit and so that transition period becomes especially high risk and lastly it would point out to you that comorbidity management is very different expectations are very different in the pediatric world versus the adult world right adults you have type 2 diabetes your primary care commander you have hypertension your primary care to manage in a pediatric world most of time when you have these conditions you're referred to sub specialists so oftentimes my young adults won't go to their primary care because they don't think that the primary care can actually manage their condition it's a very different sort of expectation in terms of who's going to manage and they end up coming to me and telling me that I have to manage to type 2 diabetes and I'm the worst person to manage your type 2 diabetes because that is no longer something that I focus on there are a lot of new medications that are out there that could be used all right now I'm gonna pull the audience again so you have a 21 year old scheduling clinic they have filled three successive clinic visits that were rescheduled for them what is the best way to reach this young widow how many of you gonna call Oh nobody's gonna call really very good what about email slash my chart okay a good proportion of you I'll text message really you're all going to use your personal cell phones to text message to young adult so yes the best way to connect to them is actually text message that has been our experience but it's especially challenging because then they end up text messaging me back hey I got braces you want to see no no not at midnight maybe to our morning but it is the best way to actually connect with them and so for young adults when they don't show up I'm using technology and leveraging it can actually really improve outcomes and to close I'm going to show you this one trial which i think is actually quite impressive this is to take at trial the ticket trial was initiated across eight centers in Canada and United States where they had an adherence intervention to try to get young adults bikini transplants to actually take their medications so everyone got pill box monitoring meaning that you could electronically tell when the pill box was actually open and you access your medications you can't actually tell they swallow the medication but at least they open it into hopes that they swallowed it afterwards and it's on the toilet or something the intervention arm actually got very intensive coaching they got text messages they got emails if that was their preference they got visual cues that they needed they got all these coach and support for about a period of nine months the control arm didn't get much they got the pill box monitoring and that was it and here I'll show you on the y-axis proportion patients with a hundred percent taking adherence and taking Hurons refers to they think that they took the medication there was also a outcome where they were looking at timing adherence where they were looking at whether or not the medication was taken at a correct time because they know what time the pill box is actually opened the black dots over here represent control arm and the red dots represent intervention or him and you can see that the odds of actually adhering to medications was statistically significantly higher and those who had gotten to intensive coaching plus electronic support text message support etc compared to those who didn't or not so in conclusion you know notes are really not the same as your older adults every individual really does mature at a different rate this is a very high-risk population formal transition process that is tailored to the priorities of the young adult is strongly recommended and I think that's where you'll have your most success I think attempting to normalize life is really important this is what the young adults want they don't want to be in your clinic every month they want to leave a normal life have a job have a family etc and you may want to delay transfer of care it's not really the chronological age sometimes the 30 year olds are still acting like 18 year olds that's okay you're maturing at a slow rate and thank you for your attention and happy to answer any questions so in late adolescence how do you deal with the issue of contraception especially you brought up the case about self cept is there an issue of concern in girls who are sexually active yes it's absolutely an issue of concern and it should be a significant priority in our transition clinic we work jointly with the ala lessen group but our priority is to get an IUD in and I have actually thought that maybe I should learn how to do it so I can make sure it's in but um you know in general that's what we recommend because oftentimes they'll tell you you're not sexually active but they really are and unintended pregnancies are one of the things that we really want to prevent we struggle with who's especially an adult you can be a lot harsher on are they socially balanced are they ready to go the older they are they can hang out kids get this big advantage to get transplanted early and for multiple reasons then things fail socially financially but what it's hard to say validated criteria but when we're trying to screen in a kid or a immature adult has anything predicted the real outcome we always we fear certain people won't do it and then there are others who were horrible on dialysis and miraculously become yeah it's a really good question I think prediction of outcomes in this group is really tough because there are multiple factors are going on sometimes social situations change the most compliant patient can become the worst nightmare very quickly and so I'm not sure that the literature is supportive of you know this has to be but in order for it for there to be you know better outcomes I think for our clinic we really do individualized assessments we have found that one-size-fit-all program does not actually work and so we required them to be able to answered either door my charm messages text messages emails when we send when and confirm that they've my main medication changes we require that they know what their baseline crowding is and what their program targets are and they lead their own labs and we go back to us prior to transplantation yeah prior to transplantation is even tougher you know again I think you want to make sure that they've demonstrated adherence and that has been shown to be somewhat predictive but again things actually change over time but I don't know in the literature that any study has shown you know this criteria is met you'll do fine at post transplant it's just a very high-risk period [Music]