Medical Home Phone Conference November 27, 2007 "Transitioning Young Adults With Congenital Heart Defects" Dr. Angela Yetman, MD Dr Samson-Fang: Today we are joined by Dr. Yetman from Pediatric Cardiology who is going to talk with us about transition of the child who s turning into an adult, with congenital heart disease, to adult care in various settings. Angela would you like to go ahead? Dr. Yetman: Thank you Lisa, and thank you for allowing me the opportunity to speak at your teleconference meeting. I am the Director of the Adult Congenital Cardiology Clinic here at Primary Children s Medical Center. I am a pediatric cardiologist foremost but also have experience in adult medicine. Today I ve been asked to provide you with some information about the structure of our Adult Congenital Cardiology Clinic as well as the type of patients we see. This clinic came into formal existence in 2006. Prior to that I had been in Denver Colorado, where I founded the Adult Congenital Cardiology Clinic there. The impetus behind having such clinics is that there is a growing number of children with congenital heart defects who are now surviving into adulthood and, by current estimates, at least 85% of children born nowadays with congenital heart defects will survive into adulthood and this is very different from survival estimates from say two decades or so ago. This is a relatively new patient population with unique medical needs that have not needed to be addressed previously. These patients have cardiac defects that are well understood by the pediatric cardiologist but are pretty foreign and poorly understood by most adult cardiologists. Yet these patients, once they reach adulthood, have all the other medical problems that adults have and thus pediatric cardiologists are not entirely comfortable caring for these patients. So these patients find themselves in a bit of a void where there are a limited number of appropriate care providers for them to see. The majority of patients born with congenital heart defects will require ongoing cardiac follow up for the rest of their lives. And this comes as a surprise to many patients as well as physicians as the patients had previously been told that they had been cured by surgery early on in childhood. And they weren t misled, that was the thinking at that time. However, over time we ve realized that a number of residual lesions or recurrent lesions may develop and that a number of patients will require repeat surgical intervention as they enter into adulthood. The transitional process of moving from pediatric care to adult care is often a very difficult one for the patient and their family. They have been followed in a children s hospital for the first 18 years of their life and they are quite comfortable there. Parents often have a hard time letting go and letting the child be independent, or the now adult be independent, at the time of the physician visit. They are used to providing the history and acting as a parent and the patient is often used to falling into this role as well, and isn t used to being responsible and acting as an independent adult in this setting. So, one of the goals of our clinic is to help make this transitional process smoother. We actually have three clinic locations; we have our transitional clinic at Primary Children s, we also have a clinic at the University of Utah and a clinic at the new Intermountain Medical Center (IMC) facility. The original clinic is at Primary Children s. If the patient s primary cardiologist here in the pediatric cardiology group feels that the patient is having a number of adult related issues, they often send the patient our way. And that may be before the patient reaches age 18. If they are 15 years old and they are inquiring about contraception and things of that sort, oftentimes the pediatric cardiologist won t be comfortable counseling in that regard and really they haven t had to deal with those issues Page 1 of 6
and aren t up on the latest recommendations for current forms of contraception with regards to certain cardiac lesions. So we may see patients as young as early adolescents and then the other end of things we have patients who are over the age of 18 who really are entirely dependent on their parents, often because of significant developmental delays, and so those patients are at the other end of the spectrum and they may get transitioned a bit later on. But both groups of patients get transitioned to our transitional clinic. The other clinics at the U and IMC are where we see patients who have gone through the transitional clinic and now want to be seen in an adult type facility or adults that are referred to us who haven t previously been followed in this pediatric center. So the transitional clinic is located in Primary Children s but is located in a separate area reserved for the use of adult patients alone. We are right across the hall from pediatric cardiology but our clinic is equipped to see adults, the beds are the appropriate size for adults, we don t have pediatric decorations, it really has more of an emphasis on the adult patient. Patients who don t have significant developmental delays are first seen alone when they come for their clinic visit to the transitional clinic and the patient s parents wait in the waiting room. The patient is seen with the parent afterwards if they are still a minor of if they are over age 18 and want the parent to be brought in. The patients ask what their diagnosis is, what signs and symptoms they should be worried about, and what the medications and dosages are. We try to educate the patients in this regard, if they don t know the answers to these questions we explain to them why they need to know the answers, why it s important, and educate them with regards to the cardiac defect. We cover issues in addition to their underlying cardiac defect. We cover issues that may be important to them including employment issues, employment restrictions, birth control, sexual activity, pregnancy, things of that sort as well as the genetics of their particular heart defect and their chance of having a child with that particular heart defect. Those issues seem like the ones that should be covered by primary care physicians but often our patients either don t have a primary care physician or only see their primary care physician in times of acute illness and those visits are focused on the acute illness rather than health maintenance. We do spend time on those sorts of issues as well and also point out the role of the primary care provider and encourage them to have a primary care provider who is best able to play a role in this regard as well and coordinate care. Many of our patients have multiple care providers and oftentimes they realize that the cardiac issues are important but they neglect some of their other issues so we encourage them to seek follow up in that regard as well. The idea of having a transitional clinic is to maintain ongoing medical care. What we know from past experiences is that if the patient is referred to a different care provider at an adult institution once they turn age 18, they are very unlikely to make that appointment until they are having problems. So by having a transitional clinic in the same facility that the patient is used to being seen at, patients stay within the same medical system and are much more compliant with follow up. And then once the relationship is established the patient can then be referred to one of our other clinics where they will end up seeing the same care provider but just at a different geographical location. The reason we do this is because we have found that there is a significant impact to lapse of care and this is something we have looked at and published on, but basically the median duration from leaving a pediatric cardiac clinic to establishing care with a new care provider is 10 years and the length of time between establishing new care directly relates to an adverse prognosis and the need for urgent surgical intervention. Thus the preventative care really seems the way to go and hopefully it is something that our clinic structure will facilitate. As I mentioned we have three clinics and I can certainly provide you with the referrals numbers to those clinics if that is something you would like. Page 2 of 6
Dr. Samson-Fang: Does anybody have any questions or even some specific cases that are on their minds? I have a question, this is Cathy. What is the general length of time that they are in the transitional mode within your clinic? How long would they stay within the transitional clinic? Dr. Yetman: There is no rule. I see patients that are referred here of any age. I actually see patients who are in their sixties still at Primary Children s. It really becomes more a question of when the patient is comfortable being seen elsewhere. I do have a number of patients who start to ask if they can be seen at another institution. They kind of grow tired of the pediatric facility and that is the ideal time to see them elsewhere. But we don t have any rule that when you reach age 21 you must be seen somewhere else. It is really on a case by case basis. Dr. Samson-Fang: If you transfer them elsewhere it s to one of our clinics? Dr. Yetman: Absolutely. Yes. Dr. Samson-Fang: Not to the adult world cardiologist. Dr. Yetman: Yes. That is just because the disease spectrum is so different, and I m sure that there are other areas of specialty where that is also the case. Adult heart disease is extremely different from congenital heart disease it s a completely different specialty so it s not surprising that an adult cardiologist would be completely unfamiliar with congenital heart disease just like many pediatric cardiologists are completely unfamiliar with ischemic heart disease. This is Chuck Norlin. You had mentioned the younger adolescent who is having more mature related questions, for those patients you would collaborate with the medical home provider, primary care pediatrician? In what ways do you collaborate with the primary care providers for those patients? Dr. Yetman: Really just by encouraging the patient to have a relationship with the primary care provider and then sending our notes on and, if need be, speaking with the primary care provider directly with regards to issues. But we also direct people to certain gynecologists who are familiar with younger age patients. A number of our patients can t be on oral contraceptives and need IUDs placed, so there are a number of providers in the state who are more comfortable doing that, so we direct patients to the appropriate care providers in that respect as well. Chuck Norlin: One of the challenges that we as pediatricians find is locating adult primary care physicians for our complex patients. Have you been able to identify any? Dr. Yetman: No. I identified a fellow over at the University of Utah who is interested in setting up such a practice. I have been here a relatively short period of time, just a year now, so I really don t have any contacts. Page 3 of 6
Dr. Terashima: Is there any thing that we can do collectively to help with insurance issues that come up? Or is it beyond everyone s control? Dr. Yetman: Really it is at the governmental level and advocating at that level. These patients often have physical limitations and thus their choice of jobs is limited and their insurance coverage is limited. Probably the majority of our patients are on Medicaid. Many of our patients are not eligible for Medicaid, and now with the recent SCHIP issues, that affects our patients as well as our older adolescent patients. It is really a matter of advocating for these patients. Dr. Terashima: On an individual level it is really difficult. Dr. Yetman: It s extremely difficult. We need some kind of lobbying group. Dr. Terashima: One more question. The contact you have working with adult care providers, could you talk about the different culture of adult medicine? In your experience, do you find it really different than working with pediatricians? Dr. Yetman: In terms of adult cardiology, it is night and day. So my clinic over a full day, from 8:00am to 5:00pm, I can t see more than 10 or 11 patients. That is going without a lunch break. That is going from back to back. Each patient is so complex and there are so many things you need to cover, it is not a visit that can be wrapped up in twenty minutes. That is very different in the adult world. Before I became actively involved in the adult cardiology clinic that we are running at the University of Utah, they were seeing 8 patients in part of a morning. There is certainly a different culture in that regard, it s not an in and out, yes you re feeling fine, okay that s it, goodbye. We are really focusing on preventative medicine and trying to improve the patient s lifestyle and looking at the whole patient rather than just bits and pieces of a patient. I think the bits and pieces of a patient is much more common in the adult world. Dr. Terashima: Thank you, so it really is important that they get this kind of care. Dr. Yetman: Absolutely. Dr. Samson-Fang: More questions? I have two questions. You mentioned the 10-year lag when you don t have a transitional clinic between seeing a pediatric cardiologist and then deciding to see an adult cardiologist. As a primary care physician, now I have kids that have GI issues or pulmonary issues. I wouldn t doubt there is a similar kind of lag problem. Without a transitional clinic existing, any idea how we can try to prevent that lag from happening? Dr. Yetman: That is a very good question and it s actually a very complex question because there are a number of issues. One is patient education so the patient has to know that they need ongoing care and that has historically been a problem. They then need to know how to seek ongoing care. It s one thing to know that you need to follow up, but if you ve called the pediatric GI clinic and they only see patients to age 18, as an example, you have to know where to go from that point. There are a lot of things left up to the patient and we can certainly help facilitate in that regard and that s what we are doing with cardiology. But there are issues at the other end as well and certainly I don t know what the state of things are in the other specialties. This is a whole new area of medicine in every regard and it applies to Page 4 of 6
outpatient medicine as well as in-patient medicine. We have a lot of patients coming forth for surgery who are adults and the question is: where should they have their surgery? Should it be done at Primary Children s where there is the surgical expertise or should it be done elsewhere? Right now it is being done at Primary Children s but that is less than ideal. What we would like is to have a separate transitional center, an area devoted to the care of these patients that could include patients such as sickle cell patients who are getting older who need hospitalization. It would be best that care providers have experience in both adult and pediatrics medicine. It really is a growing population that hasn t been there previously so there isn t anybody really with the expertise to care for these patients. The need for such care has been recognized at least amongst cardiologists and hopefully that is going on in other areas as well, but I don t know that. Dr. Samson-Fang: In your clinic, in terms of transitioning a patient s thinking like an adult. You have in part supported that by changing the environment. In a pediatric primary care clinic, most of us are working in a setting where the environment doesn t change, unless some people and I d like it if there is somebody out there, have a practice where you have certain rooms that are very adult focused and others that are more junior focused so it s more of a gradual I m going to treat you like an adult now kind of thing without that background changing. I m wondering, from your experience, what you found in terms of how that helped or doesn t help to have that environmental change around you. Dr. Yetman: I think it s important in terms of fostering independence. I don t know that, but I do believe it s very important. We struggled with the structure of that here when it looked like we weren t going to have a separate space and we talked about maybe having afternoon/evening clinics for the young adults which might be more conducive to their schedule in terms of having a job. That may be some way of getting around it. It does require some imagination. I don t know that it s important, but if I m a nineteen year old woman I wouldn t want to be still seeing the pediatrician with mobiles on the ceiling. That would make me somewhat uncomfortable and probably doesn t do much in terms of fostering independence. And you are probably not going to be comfortable providing history of your sexual activity in such an environment it would be bit awkward to me. Dr. Samson-Fang: Are there any offices out there, I m talking to the Medical Homes, that have specific rooms that they are more likely to put an older child in to foster that that sense that I am an adult and I m not a little kid, and there is not a Dr Seuss book in the room? Not me. Dr. Samson-Fang: I guess not. I think the other thing we can learn from you, from your setting up two clinics, is that you ve learned from your experience what really helps a patient to transition their thinking and what hinders that. Any other things you see as fostering that change or are being a barrier to that change as a single physician tries to move a child that they have followed along into thinking more as a young adult? Dr. Yetman: I think the fact that they change care provides is actually a good thing. I don t see children with heart defects until they transition into the adulthood. I think patients are probably more comfortable with a different care provider. They have followed with that other person through childhood, so I think the fact that they see a different physician might be a good thing, but that is speculation on my part. There are really two groups of patients. There are those patients who don t want to transition. They want to stay in the pediatric setting; that Page 5 of 6
is where they are comfortable. And then there are probably just 50 percent of patients who really want to be out of the pediatric institution and be treated like an adult. Dr. Samson-Fang: Any other questions? Barbara Ward: Could we get those referral numbers? Dr. Yetman: Absolutely. Again we have three clinics. The number to the Transitional Clinic here at Primary Children s is just the General Pediatric Cardiology number and that is 801 662-5400. The number to our IMC Clinic is 801 507-4688, which is more convenient for our patients in Utah County and the southern part of the state. University of Utah Adult Congenital Cardiology Clinic number is 801 585-7676. Dr. Samson-Fang: Thank you. In December we don t have a conference call and in January we will be joined by Susan Lewin who is a geneticist who is going to talk with us about services and supports for children with Fetal Alcohol Syndrome. Is there anything else? Barbara? Barbara Ward: The date of the January meeting is January 22 nd. Dr. Samson-Fang: Thank you everybody. In attendance: Dr. Lisa Samson-Fang, Dr. Yetman, Barbara Ward, Al Romeo, Bob Terashima, Cathy Hall, Bear Care, Clinic 6 U of U, IHC Sandy, Montezuma Creek Page 6 of 6