Ninth Annual Maternal and Child Health Epidemiology Conference / December 10-12, 2003
DR. JOHN REISS: Thanks. I was happy, in fact, to have the opportunity of participating or listening to the presentation as to what this audience is about, what MCH epidemiologists do. When Honey invited me to do this presentation and talk about epidemiological opportunities and challenges related to the transition of youth with chronic illnesses and disabilities from pediatric to adult systems of care, my question was, “Well, what are these folks going to be interested in hearing about?” I’m a counseling psychologist by training, and my primary focus is around program and policy issues, and I’ve always seen data and information as a way of identifying what we ought to do, sometimes defending what we’ve decided to do, and to move that agenda forward.
So it was exciting to hear that many of you are, in fact, interested in program issues and making use of the information, as opposed to my expectation when I hear “epidemiologist,” which is more sort of data in a dry fashion. So I’m going to talk some about the incidence rate and survival rates for children and youth with special healthcare needs, talk some about the social and cultural changes that have taken place over the years, talk a little bit with the children with special healthcare needs national goals. How many people are familiar with the goals that have been developed by the bureau and others, Maternal and Child Health Bureau and others, for children with special healthcare needs? Most of you? Some of you? A few of you. Okay, so for many of you, that will be new information. And then, from my perspective, talk about what I perceive as some of the epidemiological challenges and opportunities. And hopefully, we’ll encourage some of you who have the capacity of doing data better than I certainly do as a counseling psychologist to begin to adopt or adapt this population of young adults as a population of interest.
As we think about the incidence and survival rate of childhood onset conditions and disabilities, there’s no sort of formal definition of what this population is. So I provided you one, which is an onset before the age of 21. But also, I wanted to give you a flavor for what these conditions are about. These specific conditions, as you know, have a low incidence. They’re diverse causes, congenital anomalies sometimes related to prematurity, to the delivery process, or to the neonatal period, as we’ve heard from our earlier presentations in terms of problems that young kids have. But they’re also acquired in terms of illness or trauma. The manifestations are also heterogeneous, which is some of the conditions are progressive; some of them are static. Some of them are constantly present for the child; some are episodic. And sometimes, those episodes are unpredictable for a child, for example, with epilepsy, not knowing when he might have seizures. And another important dynamic I think is the visibility or invisibility of the child’s condition and the degree to which there is associated trauma. And there’s often co-morbidity; in other words, a number of systems are involved.
This fairly busy slide is one that outlines the incidence per thousand of a number of different childhood onset conditions and also provides information about the proportion of children with those conditions who survive to the age of 21. If anyone has corrections or additions to this information, I would appreciate it. I have done a search of the literature trying to identify the best as I could, and for some conditions, I couldn’t find any good information, for example autism is one that I couldn’t find. Kidney disease was another one where the data did not seem available. So even for the basic conditions, there are some that we don’t have a good idea about. Down Syndrome was one that CDC has done a significant amount of work on, and I think this data begins to give us a flavor for the complexity of the issues. For example, for children who have congenital heart disease, about 79 percent survive to the age of 30. Only half of the kids with Down’s and congenital heart disorders survive to 30.
But when you look at the Black/White difference, it is striking; that is, children who are White have--are now living to about age 50, and kids who have Down’s who are Black are only surviving to the age of 25. I couldn’t find any data for survival rates at 21, so I share with you what I could. But as you can see, most children with chronic conditions and disabilities, about 90 percent are surviving to adulthood. One of the question is are they not only surviving, but are they thriving? In terms of cultural and social changes that have taken place, certainly there’s been a vast change in the way in which children with disabilities and special healthcare needs are provided with education, and the Americans with Disabilities Act certainly has made a significant difference in terms of civil rights. Societal expectations have also changed as to what we expect of children who may have a disability or a special health condition. This is one of two existing pictures of FDR in a wheelchair. When Franklin Delano Roosevelt was President, it was not acceptable to our society to see our leader as someone who was a wheelchair user. For those of you who have visited the FDR Memorial in Washington D.C., you know that there is a statue of FDR at that memorial, but it was only because of significant advocacy on the part of disability rights folks that in fact that was included, trying to manifest that message that things have changed. And the next picture is of Chris Burke, who was a young man with Down Syndrome, who is the star of a TV show. So it certainly gives us a picture of the way in which things have changed. Also, societal expectations of what constitutes adulthood have changed. At 18, young people have significant legal rights and responsibilities. At 21, they have more rights and responsibilities.
But it really isn’t now until age 26 where 80 percent of children no longer are financially dependent on their family of origin. So that concept of what constitutes adulthood, how many of you are under 26 and still are, you know? I have a 20-year-old daughter who I’m sort of--how many--right. How many of your kids are still--a lot. And it used to be that that concept was kind of at age 21, you were out on your own. I mean there have been many articles in the literature now saying that adulthood really doesn’t begin until 24 or 25 or 26. So one of the implications or one of the things I challenge you to think about as MCH epidemiologists is potentially to extend that focus of what MCH is about, to potentially see children as those individuals who are still connected with their family of origin, and potentially think about children maybe up to the age of 26 as a population of interest for the MCH population. I don’t think anyone else is going to adopt them, and I hope that you folks will. This talks a little bit about the conceptualization of the population of children with special healthcare needs. It originated, as I think many of you know, as crippled children, and where the primary focus or the scope was on children with orthopedic impairments.
In the ‘70s and ‘80s, the concept was handicapped children, and it began to embrace those with developmental disabilities and other physical conditions. And it was in the ‘90s in part because of family advocacy where we began to take away those more pejorative terms about crippled children or handicap and really talk about a--use person first language, and to talk in more descriptive terms in terms of children with special healthcare needs, which encompass not only those listed above but also those with emotional and behavioral disorders. Also, the way in which care was provided to children changed. It wasn’t until, what, ’98 that the definition of children--a formal definition of “children with special healthcare needs” was published and broadly accepted, and it includes those children who have or at risk for chronic physical, developmental, behavioral, or emotional conditions and who require health and related services of a type and amount beyond that required by children generally. So again, it’s a broad population, and as we will see, it certainly goes beyond children with disabilities. Also, the paradigm of care has changed from one where it was primarily institutional-based and physician or professional driven to one now where we hear the concept of family-centered, community-based care where care is a partnership between families through professionals and families.
In terms of trying to have a better understanding of the measurement or are we doing a good job, the bureau developed six core outcome measures for children with special healthcare needs that starts with family and trying to assure that families are decision makers and they’re satisfied with services: that kids have a medical home; that kids have adequate public or private insurance; that they’re screened continuously and early for special needs; that services are organized so that they can use them easily; and the last one, to help assure that youth with special healthcare needs receive the services that they need to make necessary transitions to life, both in terms of adult care and in terms of work and independence. And I mention those, one, because those are the measures we’re now using for our nation for children and youth with special healthcare needs, but also to acknowledge or to assert that these are good are appropriate outcome measures for young adults with childhood onset conditions and disabilities. As some of you have heard who have participated in the presentations--and I understand that there’s going to be another presentation tomorrow morning on the outcomes of the national survey for children with special healthcare needs--there is now data that focuses on how the nation is doing as it relates to those six core outcomes and other related variables. As part of that, and based on the definition of children with special healthcare needs, a screener was developed that included not only children with limitations in functions, those who we traditionally think about as having disabilities, but those who use ongoing prescription medication, use specialized therapies, and so forth.
So again, it’s a broader population and it also speaks to the fact that if medicine is doing a good job, healthcare services are doing a good job, in fact, these children will not have functional limitations. So as we think about that broader population of children with special healthcare needs, it includes both those who have disabilities, but it also includes chronic conditions where we’re doing a good job. So it includes those with more severe or complex conditions, such as CP and so forth, but it doesn’t include those kids who have asthma or attention deficit disorder or allergies that don’t really require an elevated level of services. This is data that Michael Kogan reported at a recent APHA conference, but it speaks to the prevalence. And I share this with you as we think about, again, youth and young adults with special health needs, and I would note that it’s only about eight percent of children between the ages of zero and five were identified as having a special condition, but that prevalence goes up.
So it’s about 16 percent of the population who are between the ages of 12 to 17. So again, why the data may not be good in terms of the prevalence of young adults with childhood onset conditions, it gives us a good idea that around 16 or 17 or 18 percent of that 18 to 26 population may very well have special needs. So again, this gives us an idea about the comparison in terms of the population. Kids with chronic conditions constitute about 30 percent. It’s 13 or 14 percent of kids with special health needs, and it’s only six percent of children with disabilities. And as many of you know, many of the surveys that focus on the older population focus on children--focus on individuals who manifest disabilities and doesn’t encompass those who have chronic conditions. This also speaks to the probability of having a child with special needs in families, and again, that odds ratio goes up for the 17 to 18 population. These are the goals, specifically in terms of outcomes, and I will zip through these rapidly and allow you to look at those in terms of your handout. But it speaks to the fact that, one, we’re doing a fairly good job in terms of providing care for children with special needs; and two, speaks to the challenges that we have in front of us.
It also provides you with some of the questions that were used in the Children with Special Healthcare Needs Survey to get an idea about how good a job we’re doing, and that survey may be something that you as epidemiologists may want to think about using as you look at this older population. So I’m going to move through these fairly rapidly and invite you to look at those in more detail later on. The sixth goal was all youth with special healthcare needs receive services needed to support the transition to adulthood. The two specific questions that were used to get an understanding of that were “Do teens receive guidance and support in the transition to adult care?” and also, “Do teens receive vocational and career training in preparation for an adult job?” And only six percent of families indicated--and it was a survey that was done with parents rather than teens themselves--only six percent of parents of young adults and adolescents with special healthcare needs indicate that their child, their teen received both of these. And Michael may be able to speak more to the data in terms of one or the other, but even if it was twice as many said one or the other, we can see that we’re not doing a particularly good job in terms of the preparation piece.
This idea of transition has been incorporated into the President’s initiative on delivering on the promise, and as you know, is one of the core outcome measures for Title V. So we’re not doing such a great job for adolescents in terms of preparing them to make the transition, and I would also assert that we’re doing even a worse job in terms of helping to assure that there is an adult healthcare system that is able and willing to accept young people as patients. But we don’t have good data that describes successful strategies and promising practices in terms of facilitating that process.
Again, this chart gives us an idea that the probability of having an unmet need increases for those young people as they are older, so they’re sort of 1.39 times more likely to have an unmet need if you’re between 12 and 17, as opposed to between the ages of zero and five. As I was preparing for this presentation, I was looking on the website and seeing what the public was saying about children with special needs and making the public aware of the fact that kids were living longer and longer, and this was something that was a story that was on one of the TV stations in St. Pete Florida. And it indicated that a child born in 1949--and I was born in 1949, so this resonated a little bit more with me--had a nine-year life expectancy. And in fact, their data was probably wrong, as demonstrated on this chart. And if you look at this chart, probably in 1949 the life expectancy was under a year. This chart also describes the steady increase in life expectancy for people with Down Syndrome between 1968 and 1996, when we have the last data reported. You can also see the degree to which we have not made progress in terms of expanding life expectancy for Black children and children of other races. So it speaks, again, to this issue of disparities.
A number of charts here to give you an idea about the changes in life expectancy, one for cystic fibrosis. Again, children born in 1950, or when I was born, didn’t survive out of their infancy. Today, about half of all individuals who have cystic fibrosis are in fact over the age of 21. So tremendous changes have taken place because of medical science. Sickle cell disease is the same. There have been drastic improvements in life expectancy, so, too, with children born with congenital heart disease. There are about a half a million adults with congenital heart disease who are over the age of 21 in this country today, about 10 percent of whom have complex medical conditions.
And it’s rare to find an adult-trained cardiologist who’s ever seen a child with congenital heart disease. Adult cardiologists know how to take care of heart attacks and hypertension, but they’re not familiar with the complications of congenital heart disease. So what are the epidemiological challenges? Well, there is no clear discharge time for youth from the pediatric system, and sort of when children should leave pediatric care varies from place to place and organization to organization. It isn’t as though checkout time is 21; in fact, that probably should change to checkout time being 26 or 27 or 28 from home.
But we do know that about 600,000 children with special healthcare needs turn 18 every year, and one of the challenges that I think we have before us is to have a better understanding of what healthcare services do young adults with special healthcare needs receive from whom? And I don’t think we really know. I haven’t been able to find any data, for example, that describes or give us an idea about the number of young adults with spina bifida, for example, who receive adult-oriented care, that is, care from an adult-trained internist or a family physician who, in fact, is providing adult-oriented care; or even from a pediatrician who, again, is working with that young person as an individual, as the primary patient, as opposed to working with that patient primarily through the parents. There’s a rough rule of thumb as it relates to children with special healthcare needs in terms of healthcare expenditures that about 15 percent of the kids--that is those with special health needs--utilize about 85 percent of the healthcare resources. But when it comes to young adults with special needs, we really have no idea. I’m making a guess that about 20 percent of young adults have a disability or a childhood onset chronic condition, but in fact.
And again, if anyone has the data, I’d love to see it or the information to correct me; but I don’t think we have any idea about what the utilization of healthcare resources are. So the question is for you guys, “Are these young people thriving, or are they just surviving?” What impact does graduating from pediatric or child-centered care have on access to care, the accessibility, the accommodations, and so forth; health status and well being; healthcare utilization; satisfaction with care; adverse health outcomes? Part of what we heard from some research that we were doing, in fact, was from young people with sickle cell disease who as young adults would seek care from adult ERs. And what they related was that if you were Black and you knew the type of medications you needed to control your pain, you were seen as drug-seeking when you went to an adult ER, as opposed to when they were receiving care from the pediatric system where they were trained and encouraged to take more responsibility and to be informed for their care. Other kids spoke about in fact having bad experiences with the adult system and dropping out of healthcare.
So, too, pediatric providers shared individual stories as to sort of things that didn’t go well as they discharged kids to the adult system and sort of swore, “I’ll never do that again, and I’ll continue to take care.” But we have no idea about sort of the breath and the extent or the impact of those problems. Developmental tasks of young adults are separating from parents, developing healthy style, participating in community life, being happy. Again, sort of what do we know about young adults with chronic illnesses and abilities compared to their other cohorts? We did a survey looking at the barriers to transition, talking to the directors of state Title V Children with Special Healthcare Needs programs. We got responses of about 37 states, a total of 104 responses, and 24 of those responses spoke to the capacity, or the lack of capacity, of adult providers to take on responsibility of young people. But again, there’s no clear data related to the capacity, the willingness, or the barriers that the adult system perceives in terms of not taking on responsibilities. Here’s some more data, or information, as it relates to what Title V programs felt adult providers were not doing. And one of the observations that you’ve made, Debbie, and others have made is that there’s no Title V program that’s comparable to Children with Special Healthcare Needs for young adults that serves as the glue, that serves as the mechanism to bring together the system and assure that there is a capacity.
A number of slides here outline the health risks of transfer, which I think are, again, important to take into consideration as we may want to carry out studies that looks on what happens to these young folks. A significant one is a reduction in the amount, duration, and scope of healthcare services and supports, particularly as it relates to the change in eligibility for Medicaid and other programs. Another is the issue related to provider, parent, and consumer participation in medical decision-making. And part of what we’ve heard is that adult providers have a much harder time to accept the knowledge and skills that young people have in managing their own care. When they go to adult providers, they hear that “This is kind of the way we do it here and this is the regimen that we use; and if you don’t like the way I provide your care then you can look someplace else,” as opposed to the pediatric system potentially being more collaborative.
So the culture of adult children’s hospitals and pediatric healthcare seems to be an issue that as we think about how children’s care is provided--it’s multidisciplinary in nature, and you folks have certainly talked about that in terms of the approach to perinatal care and so forth; it’s developmentally-oriented; family focused; it’s more informal and relaxed--and as we look at the culture of the adult healthcare system, this is the image, at least, that some families have. And there may be an emerging multidisciplinary model, but it certainly isn’t the primary focus. It’s more patient as opposed to family focused, it’s more diagnosis as opposed to person focused, and it certainly requires the patient to be autonomous or able to take on responsibilities. And adult providers are much less accepting of having a young person bring a parent or an assistant with them to serve as an advocate or serve as a partner in decision making.
The other piece of the adult healthcare system, I think, is the focus on resources, that unless you have insurance, you’re much less likely to access care, whereas within the pediatric system, one, there is a broader range of services and supports. Title V often serves as a safety net. And so, too, pediatric hospitals often have more flexible resources in terms of endowment to provide care. So medical status is really important, and it’s unfortunate that in fact when you turn 18 or 19 or 21, you’re less likely to qualify for public insurance, and the amount, duration, and scope of services provided to you through Medicaid, for example, are less. You don’t have the EPSTT protections. And often, private insurance, for example, ends when you’re 23, even if you’re going to college. So you’ll lose that support. Here, we see data on the proportion of people who don’t have insurance, and you can see that that jumps up radically when you hit the age of 18 to 24. And here’s some data that in fact was conducted by some of the staff at CDC that looked at the NHIS Disability Supplement. And you can see that the proportion of kids who are not covered who were identified as having a disability was comparable to that population of whole of young people.
And it was in fact 26 percent didn’t have health insurance, and these were kids who had identified disabilities. It also speaks to the fact that those who do have insurance were more likely to have continuity of care and a provider that they could relate to and go to. Here’s some additional detailed data on that relationship between access to care. So why is this so important and why is it so challenging to implement healthcare transition programs? Well, I think it’s a multi-factorial problem. It involves healthcare systems issues; financing issues; patient and family preferences, that is, there are many cases where families want to continue with the provider that they have confidence in. It has to do with physician knowledge; experience in terms of, one, adult providers willing to take those on, and, two, pediatric providers doing a better job preparing young people and their families to make that transition and encouraging the development of autonomy in terms of decision making. I think it has to do with the lack of data around the importance of this issue. We really don’t have a clear idea about how many kids there really are, what the financial impact is, or what the implication is for secondary conditions. And also, there’s a lack of models, evidence, or a mandate to effectively carry this out. So in terms of making a difference, I think we need to make transition a key measure of success, and we also need to transfer the knowledge we have into impact to make a difference in terms of identifying what, in fact, are promising practices to promulgate information about that success. Opportunities, we can think about a variety of studies both cross-sectional and longitudinal. We have no idea about how that transition from pediatric to adult care in fact changes the life trajectory of young people.
We heard from a number of providers that young people are tuned up by their pediatric providers. They come in and they get a new wheelchair if they have spina bifida; or if they have cystic fibrosis, they bring them into the hospital more often to get them into a state of sort of maximal, optimal health. My expectation, in fact, is that that sort of trajectory lasts for a period of time--maybe a year, maybe two--in terms of having less than positive healthcare. It’s a couple of years--it’s two or three or four years--after they leave the pediatric system and are in the adult system that in fact we will begin to see the manifestations of secondary conditions or more adverse effects. But again, we really don’t know what those are. And also, there are no studies of the few transitional programs that do exist, the state of Washington having a long-term program. So we have opportunities and the issues that have been talked about in terms of racial disparities, in terms of the incidence of adverse events and the emergence of secondary conditions, sort of what happens to these kids as they leave their family.
Do they go from rural areas to the cities? We really don’t know what happens there. What are their educational attainments? What are their living conditions? Are they living in congregate settings and community-based settings, or are they living on their own? What is their access to preventive primary and specialty care? What is their access to reproductive healthcare? These are all things that we really don’t know about that 18 to 24 or 18 to 26 population. There have been a number of initiatives that have tried to sort of focus on this issue of transition. Back in 1989, Surgeon General Koop brought together a conference called “Growing Up and Getting Medical Care: Youth with Special Healthcare Needs.” My organization, the Institute, held a follow-up conference 10 years later in 1999, and we found that that conference had great recommendations and identified issues that still persisted, and not a whole lot had changed in terms of, one, what we knew, or, two, what we were doing.
Here are some other resources as you may be interested in this issue, particularly the last one being a policy statement that has been endorsed by the American Academy of Pediatrics, the American Academy of Family Physicians, and the Organization of Internal Medicine, that I can never remember what the acronym is. Anyway, they bought into it, too. They haven’t necessarily promulgated it, but those national organizations have bought into it. And last is a website that we’ve developed with support from the National Institutes on Disability and Rehabilitation Research that, again, provide you with some resources. So I hope I’ve challenged you and encouraged you to think about this issue more and will take on and embrace this population. And next, we’re going to hear from Nora Wells, who will speak from the family perspective on what transition means and what opportunities there are.