AMCHP 2006 ANNUAL CONFERENCE
EARLY CHILDHOOD: BUILDING THE FOUNDATION FOR LIFELONG HEALTH
March 4-8, 2006
EDWARD SHORE: Thank you, Jeff. Well, I am truly honored to be asked to give this McQueen lecture, and to speak to all the people who taught me public health. This really does feel like home, and I’m pleased to be here. Kind of to head to the punch line of what I want to say comes out of also John McQueen’s history, and the history that the first person who gave the McQueen lecture I believe was Bob Haggerty, who I consider a friend in a mentor. John McQueen not only was very active in public health. He was actually president of the American Academy of Pediatrics in 1973, ’74. And what I really want to focus on at the end is that link between public health and other channel healthcare providers, because I think we share a real common mission.
As you all heard this morning and I’m going to reiterate a little bit, what happens during the early years of children’s lives is extraordinarily important for them and for us. Human development follows a trajectory that’s established very early in life. The architecture of the brain is established early, and it is influenced by risk factors that can diminish the ultimate outcomes for children, or protective factors that can increase it. And in a very simple way, all of our jobs are simply to reduce those risk factors and increase the protective factors that influence children.
Another economist, Jim Heckman, who is a Nobel laureate, has been an outstanding advocate for the value of contributing to and investing in children very early in life. And I think his message is critical and unfortunately not yet fully appreciated by the political process that distributes resources in this country. There’s been a number of studies that show the different kinds of investment in early childhood, in this case some data from Rand in California show a benefit to cost ratio of $1.95 to a dollar, which is the most conservative estimate, so almost a two for one outcome in investing in preschool programs. And if they use a less conservative measure it’s almost, it’s more than $4 to one dollar invested in terms of the ultimate outcomes for children. Studies of home visiting have shown similar things. And one of the messages from the home visiting research and similar research has been that the highest risk families are where the highest payoffs are. So, although I believe in universal approaches, we’re going to get, from a financial point of view, the most benefit from investing in those families that are as people now call the high opportunity families. And they are high opportunities because we can get the most outcomes for our investments from them.
This is a quote from the Academy of Pediatrics publication on a task force on the family, the point of which is that, and maybe some of you heard me say this previously, Hilary Clinton had this book out previously that said it takes a village to raise a family. I think that’s incorrect. I think really only families can raise children. But it takes a village to raise the family, not a village to raise children. And so our focus really has to be increasingly and continuously on the families and helping them do the job that they need to do to improve the outcomes for kids. There’s lots of evidence that when parents are able to do a better job, the outcomes for children are better. This is just some in terms of school readiness. Looking at parents educational, actually mothers’ educational degrees. And you can see that mothers with high school, with college degrees, their children are much better prepared, at least in terms of some of the academic skills, when they enter school. So, you know, you don’t have to have a college degree to read to your children and increase their school readiness. But families are really critical and we have to be increasingly putting our efforts on them.
Now, as important as families are, there’s really disturbing data, or for those of us who have been working with families a long time, I guess just reinforcing data that shows that just because you can procreate a child, doesn’t mean you’re ready to be a parent. And this is a national survey of parents of young children and this data is worth, I think, I won’t read most of my slides to you, but this one is worth reading. Sixty-two percent of parents of young children believe that babies don’t take in or react to the world around them until they’re two months of age. We know that’s incorrect. Fifty-five percent say a baby must be at least three months to sense their parents’ mood. Absolutely wrong. Almost 40% of parents of young children believe a 12-month-old’s behavior can be based on revenge. That’s the making of child abuse. And 51% expect a 15-month-old to share. My 15-year-old hasn’t figured that one out.
There’s some really fascinating information from some longitudinal studies in England, that show that it’s not just the social outcomes of kids that are affected by families, but even their physical health outcomes. And I hope you can see this data from the back. This compares, going down the pink side there, breaking children’s childhood experiences into three categories: those people who report that they had a normal, happy childhood; those who were restricted and unhappy in children; and those who reported they were neglected or abused. This is data asking 43-year-old adults to reflect back on their childhood experiences, and then looking at the odds ratios of them having a chronic health problem at 43 or older.
And what you see is, using normal/happy as the baseline, restricted unhappy children have about a 50% increase in the rate of having chronic health problems. And children who were neglected or abused during childhood have a two to 15 times increased rate of having chronic health problems as adults, because of their early childhood experience. So early childhood is extraordinarily important. Just because you can be a parent doesn’t mean you’re good one and we really need to be helping on that. Somehow I lost my next slide.
There it is. Now, if you ask parents about what it’s like being a parent, this study’s been repeated over and over. In this one, 87% of parents say that the job of being a parent is more difficult today than it used to be. If you asked my parents, probably 85% of their generation would have said it was more difficult than it used to be too. But perception is reality. And parents really feel overwhelmed, and that being a parent is a difficult thing to do. Eighty-seven percent also reported that they often feel uncertain about what is the right thing to do. And that’s really a plus. That’s an opening. So, the other stuff I showed you before about the misconception of parents is concerning, but parents recognize it’s a hard job, and they need help. So that’s the opening for us to intervene.
If you ask parents what their concerns are—and this is some data from parents of young children is--they’re concerned about their children’s behavior, their communication skills, their emotional well-being, their ability to get along with others, and their learning preschool skills. Most of those are social, emotional, developmental concerns. Okay. Parents are really concerned about that, and they want help. I think I may have skipped over a slide. If you ask parents what they want more information on, same kind of population of young parents, they want help on teaching their child how to learn, how to discipline. They want help with toilet training, helping with sleep, and knowing what to do when a child is crying. Pretty simple stuff at least conceptually, but these are things that ought to point us to what we should be focusing on in early childhood.
Some more good news. This is a study, now 26 years old, that Pat McCasean and his colleague in Arkansas did. This is one of the very few randomized control trials of good-quality well childcare. And what they found is when you give good quality well childcare, you can increase the sensitivity of a mother in terms of the mother-child interaction. You can increase the amount of appropriate play between the mother and the child; you can increase their overall appropriateness of their interactions. You can increase vocal contact. And we know that the more you talk to your children positively, the better their vocabulary is and the more ready they’re going to be for school. And that you can interact with your child, offering to interact, as opposed to just waiting for the child to call you out and ask for your interaction. So we know at least from this study and a few other things, that simple well childcare can make a difference.
We know that the Reach Out and Read Program, which is now in tens of thousands of pediatric practices across, tens of thousands of pediatricians and child physicians across the country are participating in Reach Out and Read. It serves over 2 million children a year. It’s been shown to change parents’ attitudes about reading. It improves children’s perceptive and expressive language, it reduces language delays. So once again, we have evidence that simple intervention in the context of preventive child healthcare can make a difference.
The Healthy Steps Program, there’s a workshop on it this morning. This is data from the first wave of evaluation, I think Cynthia’s starting to present some of the second wave data. And what I wanted to focus on was the parenting behaviors that good-quality well childcare affected. Parents in the intervention group hit their children less frequently, they tended to negotiate with their children more, and they ignored misbehaviors more. Good parenting processes that could be learned again in a context of good quality preventive child healthcare.
Now, there’s a lot of opportunity within the healthcare system to have those interactions with parents and improve early child development. The most common reason for children seeing a child healthcare provider is for preventive care. Take that away, and practices are going to lose 30% of their revenue. So it’s a very important part of preventive care. I have to say when I’ve talked to pediatricians about well childcare, they’re not thrilled with what they do. They kind of say, “Yeah, I’d do it, but it’s getting a little rote and I’m not sure it’s worthwhile. And I’m kind of bored by it, and I’m not sure that parents are enthusiastic about it either.” The amount of time that’s available in preventive care is substantial. The average visit is somewhere around 20 minutes. There’s also about 20 minutes of waiting room time for each of these visits that somebody could be doing something with. And I just wanted to point that out as an opportunity of things that we could do.
Also, when you ask parents about how helpful they find preventive child health care, particularly around child development issues, in this study, 64% of them found their child health care provider very helpful in discussing child health provide issues. Twenty-two percent found it somewhat helpful. That’s not bad. I mean, I would hope that it was 100%. But it means that there’s a receptiveness and there’s some possibility of doing good things with well childcare. The flip side of it is that in fact, if you start looking at measures of quality of well childcare in the United States, they’re not so good. Somewhere depending on the study, up to 79% of parents report not discussing an important child development topic with their pediatrician. Fifty-seven percent report not receiving any kind of developmental assessment. And we know that if you don’t identify these children early and intervene early, it’s an opportunity missed. And parents report that very often, their concerns are neither elicited, nor if they’re elicited, addressed. Now, one of the reasons for that is that what we expect from a preventive child healthcare visit is probably impossible to accomplish.
And I kind of highlighted the developmental services because those are things that I think are particularly important, at least from where I sit today. But there’s all these other things, screening tests and measuring and immunizations and doing a physical exam, which is most of the times worthless. And all these other things that you’re trying to do, and Bright Futures comes out with, you know, hundreds of pages of more recommendations. There’s no paucity of guidance in recommendations of how to fill those 20 minutes. The problem is how do you meet the parents’ needs and do what you feel like you need to do as well. When you look at the anticipatory guidance portion of well childcare visits, it’s not very much. Out of that 20 minutes, you get about three minutes for parent education for the very young children, and then it drops substantially as kids get older. It actually picks up a little. You get up to two minutes of education during an adolescent care visit. But everybody in this audience knows that’s not sufficient to convey important messages, let alone to answer the concerns of the parents or the child.
Now, if you ask pediatricians what they’re doing and how they’re doing—and this is for, I think this was for younger children, there’s a spectrum of things that are discussed, but the rate at which they’re consistently discussed is not what we’d wish. Forty-eight percent of pediatricians say they always counsel about car seats, meaning 52% are not always counseling about use of car seats. Thirty-four percent are asking about tobacco use in the house. Sixty-six percent are not. Pediatricians seem to be comfortable talking about nutrition, breastfeeding, bottle-feeding, diet, nutrition, and I think all the push on obesity is increasing that. There’s lots of other things that we’re not discussing as well, and one of the issues is how do you figure out what to focus on and what not to. Even where they’re doing some of the things, some of the kind of bread-and-butter things that you’d think ought to be happening, there is some discrepancies in things we’d like to see. This is looking at hearing screening at well child visits.
On the first side of the graph, you can see the group of kids who are considered untestable. Tend to be young kids, they weren’t paying attention, something else was going on. Three percent of the untestable kids were referred. Twenty-four percent were asked, “Well, why don’t you come back and we’ll do this again some other time, and maybe the child will be testable?” And 73% of the time no action was taken. If you look at the kids who failed the screen, so they were testable, but the screen, they failed it, 28% were referred. Thirteen percent, we said, “Well, yeah, you failed it, but maybe you’ve got some fluid in there. Why don’t you come back and we’ll retest it?” And 59% of the time when a child failed a hearing screen, nothing happened. So, it’s one thing to do the screening pieces, and as everybody in public health knows, there’s no point in doing the screening if you’re not going to follow up with the right referral, and follow up and coordinate that care.
So there’s some real problems in this kind of very bread and butter thing. If you look at just identifying developmental or behavioral problems, this is a study against kind of a gold standard. Pediatricians identified 8.7% of kids having a behavioral development problem, versus 13% were identified by a more detailed assessment. And the school-age ratio is worse than that. We’re missing about half of the kids with developmental behavioral problems in school age. So there’s a need to increase the sophistication consistency of the screening that we’re doing.
And this is kind of like the hearing thing. This is some data looking at children who had gotten into the early intervention program. These are children less than 31 months of age who had or were at least identified at risk for having developmental problems. Parents first had a concern about these children development at about seven months of age. A diagnosis was made; some label was put on by the health-care provider generally at nine months of age. The referral didn’t happen until they were almost 13 and a half months of age, and then took another couple months of AIFSP. So we’re talking about a nine-month delay between parents’ concerns and getting going on the intervention. And nine months out of 16 months age, if you look at this top, I mean, that’s more than half of a child’s life. We’ve lost the opportunity to intervene effectively. So we have some problems not just with picking up problems, but moving the kids into the services that they need, making sure those happen appropriately. So, we have some system of problems. If you talk to the physicians, why they’re not doing these things, they have some very legitimate reasons, besides that circle I showed you of all the things they’re trying to cover, which includes they don’t feel like they have sufficient time to do all they would like to do. They don’t feel they’re being adequately reimbursed for a lot of these services. They don’t feel there’s diagnostic and treatment services available in their community. They don’t feel they’re well trained to do this. They don’t feel the resources for referral are present. And frankly I think there’s kind of an inertia and a difficulty changing what you’ve always done.
And there has not been a lot of leadership in this country to really take a look at what’s going on in terms of preventive care and trying to change those for the better. This slide’s really important. This is data on a national sample of families, looking at the utilization of well childcare. And what you can see is the green line are the number of well child visits recommended by the American Academy of Pediatrics at any age. And the red line are the number of well child visits that actually occur. And what you can see is that children are getting about half the recommended well child visits. Parents are saying, this isn’t valuable enough in our minds to make and keep these appointments. Now clearly families have barriers, they make it difficult to get the care and follow through on the care. But whatever the reason, they’re not buying what’s being sold. It’s not of sufficient value in their own minds to follow these recommendations. Or maybe the recommendations are wrong. But in any case, families are voting with their feet. So, of all those things we’d like to cover and teach parents and screen kids for in health, we’re missing half of the opportunities because the parents are not valuing sufficiently what we’re giving them.
Now, there’s some interesting data that I pulled out of maps, looking at, the blue is uninsured kids, the red is insured kids, looking at the receipt of any well childcare in the past year. What you can see is about the same number of proportion of children, insured or uninsured, 70% of them are getting a well child visit in the last year. And that’s, I’ll come back to that. When the kids get older, the numbers drop substantially, and they drop even more for kids who are uninsured, and then when you get even older, you start adding in the school-age and adolescent kids, the numbers drop, dramatically.
A couple lessons here. One is, I did this analysis not for looking at this actually. I was wondering, “What happens when you have high deductible health plans? So, you are in essence uninsured for your first thousand dollars, which is your preventive care. Will parents stop getting preventive care, and so we could use being uninsured as a proxy for having $1,000 deductible. And as you can see, it makes a difference, particularly when you get past the age when kids are getting immunizations. So parents have gotten the message that these first couple years the visits are important because they want to get their shots. But as soon as you start giving immunizations, again, the value of well childcare in the mind of the parents seems to be dropping. This is an older study, looking at the number of kids who are complying with the recommendations for immunizations versus well childcare. And you can see somehow, perhaps through public health clinics, they’re managing to get their shots. But they weren’t keeping up with their well child visits.
So we have a real problem in this country in terms of how the system, if you will, of well childcare. I think we need to rethink the whole thing. I think we need to start with a blank sheet of paper and rethink how we’re doing well childcare and preventive child health services in this country. I think the parents are saying that to us, I think the doctors when you interview them, are saying they’re not really happy with it. We really need to start fresh and give it some new thought. One of the first things we need to do is to find what it is we’re trying to accomplish. You can search high and low and you’re going to have trouble finding a list that says, this is what we’re trying to accomplish through well childcare. You’ll find lots of lists. This is what we’re supposed to do, but not what we’re supposed to achieve. So we need to do that. I think we need to re-look at that schedule and the content of care at each visit. That schedule was made up in the mid-1960s by a bunch of thoughtful, well-meaning clinicians. They based it on the immunization schedule and what they were doing in their practices. I think it’s time to take a new look and say, “Okay, when do we really need to see these kids? Maybe it’s not when a shot is due. Maybe it’s when there’s an important transition in children’s lives. Maybe some of the business we have aren’t necessary, but others are.”
And actually, the new edition of Bright Futures I think is going to be addressing this to some extent. We need to have standards of care. The quality is all over the map. And part of it is nobody’s ever articulated, what’s the standard of care? What’s good quality? We need to individualize the content of care. I mean, everybody knows that parents will learn best what it is they want to learn. So you have to ask them, “What are you concerned about?” And that should guide the visits. Okay, doesn’t mean you can’t give some other things too. But we need to be individualizing much more. No more of this cookie cutter kind of stuff.
Offices are really inefficient. I can still remember going to my pediatrician when I was a young child, and the process that you go through, you walk into the office and you go up to the front desk and give them your insurance card and you sit down and somebody calls you back, and then you get weighed and measured, and, you know, you’ve all been through the routine. It hasn’t changed in 50 years. Maybe we could do things differently that would be better and more efficient and make better use of that 20 minutes of contact time, let alone the 20 minutes of time that you’re sitting there reading the magazines. I think we need to start thinking about making, improving the quality of, or at least thinking about the quality, something that is just a routine part of our everyday lives, whether we’re public-health people or whether we’re clinicians seeing families. We need to think about improving what we’re doing, ‘cause it’s not good enough. We need to improve education of preventive care. I shutter to tell you how I learned preventive care when I was in training. I learned how to do vision screening by watching the nurse in the hallway. Okay? And if I hadn’t watched, I probably wouldn’t know how to do it, and I hope I’m doing it right.
But that was one of the few models I had. For some of the rest of the stuff, I never saw anybody do it. Somebody handed me a book and said, “Here, go in and talk to this family.” So we could do a whole lot better with training. And then finally, we really need to think about how we pay for this. One of the crazy things about EPSDT is that there’s a long list. Most of you have seen it. This is what you’re supposed to do with this visit. And if you don’t do every single one, you don’t get paid for the visit. So what happens is everybody checks off every single one. But it doesn’t really happen, and if it happens, it’s very cursory, because you can’t do every single one in a 20-minute visit. So we really need to rethink our payment process too.
And one of the difficulties of changing things—and this is where you guys really have a potential role—there are about 40-some thousand pediatricians in this country who are out there in community practice. Probably an equal number of family physicians who are seeing kids. Those pediatricians are in something between nine and 10,000 practices. Nobody actually has these numbers. I did some extrapolation back at the envelope stuff. So, maybe 2,000 practices per state, but I’m sure it doesn’t average out in that way. There’s lots of variation. Most of these practices then have about 21 people working in the practices. Their turnover rate is substantial. The actual physicians, clinician turnover is 27% every four years. Staff turnover, support staff is almost 40% every two years. So when you finally learn how to do it you move on.
We’ve got a couple ways that we can expect practices to improve. One that we can just expect, they’ll be motivated by themselves. They want to do a good job, and they’ll do that. But frankly, most practitioners are so busy; they don’t start their day thinking, “Well, how can I do a better job today?” They just want to get from one side of this maze to the other and go home. We can provide some incentives. We could threaten, but that’s never shown to do any good at all. We could give them a partner, somebody from the outside who can say, “Well, how are you doing this and why are you doing it that way and can you think of some other ways to do it?” And I think that partnership actually is going to work best if we don’t just try to play within the same system but we actually try to work out how to change that system. Now, partnership, the bureau has done a wonderful job of modeling partnership in its relationships with the American Academy of Pediatrics. Those two national presence have mission statements that are remarkably similar. And there’s been a lot of resources that have gone from MCHB to the Academy, and we’ve had some stellar programs, like Bright Futures, Healthy Childcare America, and others that really emulate how partnership ought to be done.
What’s been missing is that we haven’t had the same kind of partnership at the local level. We haven’t had an active partnership consistently between MCH on a state level or a local level, and practices. Now, you all know this one, I don’t have to go through this pyramid, which I think, you know, when I started in public health I think is when Peter and MCHB came out with this. And it took me a while to get it, but I think it really makes a lot of sense. But I want to point out that taking that pyramid and taking a look at the performing, performance measures that you’re supposed to report every year, of the 18 national performance measures, eight of them depend on the primary healthcare system for you to accomplish them. You can’t accomplish any of these eight unless the clinicians are there doing their job right. So, if you want it to look good, you’ve got to help them look good.
This is how I think it fits together. Okay. Pediatrics does mostly direct healthcare. A little bit of enabling service, less population service, and hardly any infrastructure building. But you do the opposite. This looks like a match made in heaven to me. Okay. And I think this kind of model could be very helpful, if for example we’re concerned about the direct healthcare services. Okay. How can your infrastructure building improve the quality of direct healthcare services? If, you know, you’ve heard some, I think today, and you all know, and I’ve just talked about the difficulty of making referrals and assuring that that kind of care coordination service happens. Okay. It’s a small part of pediactrics, but it’s a big part of what you do, and you could help them do it well.
So, I think it’ll be an interesting exercise, and we could spend the rest of the afternoon thinking about how each of the layers of the child public health pyramid could contribute to each of the layers of what the direct care child healthcare providers do. And I think by thinking this through, we could find ways of being partners that would really move us forward. Now, when I was at Iowa, some of our young staff did a little project, where they surveyed family physician, any child healthcare practice that was taking care of children basically. And their purpose was not the data I’m going to show you, but this came out of it. But they asked in the course of things, do you have a formal relationship, do you, a clinical provider in the community; have a formal relationship with your local child health public health people? Four percent had a formal relationship, 58% had an informal relationship. I don’t know exactly what that means. Maybe it means they would call when they had a dog bite, or needed information on what the latest lead screening recommendations were. And 38%, they had no relationship at all. 90% of those practices rarely or never made a referral to public health.
Frankly, I think if you went and talked to people in those practices, those 10,000 practices I showed you around the country, who by the way never talked to one another, I mean, those are 10,000 independent small businesses, whose partners often don’t talk to one another, let alone across the practices. So that is not a system in any sense of the word. If you ask them, who’s their local public-health person, if they had a name to it, very few would be able to name those people. So, they’re not going to reach out to you. If you want that partnership, and I think we need that partnership to do a better job for young children and families, you’re going to have to reach out to them. You’re going to have to figure out ways, taking your pyramid in their pyramid, okay, and figuring out how to work together. But you’re going to have to make the initiative. You know how to do that. This is basic bread and butter MCH work. You form relationships locally with people. You know, we in public health know how to convene meetings, we know how to form partnerships. It’s just basic bread and butter stuff for you. Talk to them about what the issues are, their concerns are, so you have a shared agenda. Figure out what it is you’re trying to accomplish. Figure out what you can offer to them, what they might be able to offer to you. And it’s going to take time, which I was talking at the table today, if there’s one thing in public health people are, is patient. You know, we look for the glass being half full because people are always trying to drain it.
So, you know, I think this is just in our heart and soul. And this is an opportunity to form some partnerships that I think that need to be formed, the quality is poor, the outcomes for children are dependent on us doing a good job in well childcare, in childcare, in home visiting, and all the other services we do. This one I think has been neglected. I think it’s an opportunity for all of us to improve and do a better job. So, good luck with that. I think the future of children is really in your hands in this regard. Thank you.
JEFF: Thank you, Ed. We probably have time for one or two questions of Ed if people want to. Ed, I have a question then. You know, I know you’ve done a lot of work around ABCD2 and some of that system building. Where do you see the AAP, MCHB, and others are really doing a lot around the medical home initiative and chronic disease and trying to really change systems and continuous quality improvement? Where do you see all of this fitting? Or how do we get there?
DR. EDWARD SHORE: Well, I really think it’s a, medical home is a natural. Because if you look at the, like the index of medical home and what you weigh yourself on, it’s all this same kind of things. But, you know, we look at care coordination, we look at family center care, we look at making sure that the screening and identification of these kids is done in an appropriate way. So, a successful medical home requires the same kind of things that we’ve just been talking about. But the docs need help. And I think building on Bright Futures is the way to go.
One of the things I’ve been starting to encourage people to think about, and I alluded to it earlier, is not doing the same thing for every body, but somehow individualizing care. I’ve been thinking of calling it tiered care, so that there are low risk families who, you know, like me and you, and, you know, we don’t need a lot of well childcare visits and we don’t need a lot of advice, but we need some. There are other families who need a whole lot. But, you know, we all get the same 15 minutes or 20-minute visits and we all get the same content. And that doesn’t make any sense of all. So, medical home is really in part a movement toward individualizing and increasing the quality of what’s done. And I think it all fits together in this way. We’re certainly moving there. You know, I think AMCHP is on the same page, and as is the Academy. But again, I think we need this partnership to figure out, how can we each contribute to this? Neither side can do it alone, we need one another. And as I said, public health’s going to have to do the reaching out.
JEFF: Okay, well, we’ve got 15 minutes till our next session. And so I thank you all and I again thank Ed Shore for being here, and congratulations.