AMCHP 2006 ANNUAL CONFERENCE
EARLY CHILDHOOD: BUILDING THE FOUNDATION FOR LIFELONG HEALTH
March 4-8, 2006
DR. PAUL LIPKIN: Again, I'm Paul Lipkin. I'm here on behalf actually of the American Academy of Pediatrics. What I would like to talk about this morning is a collaboration between the AAP, and two federal agencies, the Center for Disease Control and the MCH Bureau.
The academy has traditionally been putting forth policy statements, does multiple statements per year, looking towards improving child health in general. And, um, what we have been trying to do over this past year is to take policy statements, in fact, to the next level through our collaboration with CDC and the MCHB. And particularly, in improving developmental surveillance and screening in the office setting.
First, let's start in 2001. At that point in time, the AAP's committee on children with disability put out its policy on developmental surveillance and screening. Which, in fact, was major step forward in its promotion of this process and related concepts.
Why was it a major step forward? Well, there were several different concepts that were put forth through that statement. One it recognized the concept of developmental surveillance. Two, it used the concept of periodically screening children for development over time. Three, strong recommendation was for the use of reliable and standardized screening instruments. Four, a strong case was made for referral for early intervention services. Five, a discussion began with determining a cause for children with developmental problems. And then finally, important emphasis was on maintaining community‑based links. So in and of itself, the policy statement in fact was really a major step forward in expanding the concept of surveillance and screening and putting forth some goals in this effort.
However, in fact, the goals for improving developmental screening were disappointingly not met, as revealed in the 2002 periodic survey of pediatric fellows. While promoting the principal developmental screening, it wasn't effective in addressing the process of screening.
Issues were highlighted in the survey that represented major areas that needed to be addressed. One was found that, that developmental screening surveillance was being delivered inconsistently across settings. Validated screening tools were, in fact, not being used. There was lack of confidence in advising patients what to do when developmental concerns arose. There was a lack of available resources for practices to implement these recommendations. And pediatricians in general felt inadequately trained in developmental screening and surveillance.
Only about 20 or 30 percent of children with disabilities were, in fact, being identified before school entrance. So there were major gaps that were being highlighted here. So despite the fact that there was a good policy statement being put in place, developmental screening was not being done. The survey was completed in 2002. And there was also published in 2005, in pediatrics, with the citation reference about here, and it's in your handouts.
There's an important point that need to be highlighted from that. First of all, seven out of 10 pediatricians were reported always identifying potential problems, but they were identified doing that through clinical assessment, without using any sort of screening instrument or checklist. 48 percent of the pediatricians indicated that they always or sometimes use a formal developmental screening instrument. So about only half were using a formal tool.
The majority were saying that they were using the Denver two for the developmental screening. And that has now been well‑proven to have very modest sensitivity and specificity, depending on how the results are interpreted.
And finally, most pediatricians were, in fact, relying upon clinical judgment, which is now known to correctly identify only about 30 percent of children with developmental disabilities. So there was a major gap here between the policy statement that was being put in place and, in fact, actual practice.
And so, to address these disappointing performances, the AAP formed a collaboration of two key partnerships to further promote developmental screening and surveillance. One with the National Center on Birth Defects and Developmental Disabilities at the Centers for Disease Control Prevention, and the other with the Maternal and Child Health Bureau.
There's been two major projects that have come forth for improving developmental screening and surveillance. One is the Medical Home Surveillance and Screening Program, which comes out of the funding from the CDC.
This is being run through the academy's, what's now known as the Council on Children with Disabilities, which is a merger of the Committee on Children with Disabilities in this section on Children with Disabilities. The council is now partnering in this project as project advisory committee.
Some important efforts have emerged from this effort. One is the to Learn the Signs, Act Early campaign. A second, which is not noted on here, is the Early ‑‑ EDHI, is the Early Hearing Detection Initiative. And then creation of a general public health strategy towards documenting developmental health has also been put forth.
The National Center of Medical Home Initiatives for children with special needs was created through a cooperative agreement through the Maternal Child Health Bureau. And from this there's been created a Medical Home Initiatives Advisory Committee, and a Medical Home Warning Collaborative. And then finally, an early intervention referral form.
At the AAP, these programs are administered through the Division of Children with Special Needs. And through that division, two new efforts have been put forth, which I'm going to be presenting for the remainder of this section of the session.
One is a policy revision committee, which has been specifically pulled together with the intent of revising that 2001 statement on developmental screening and surveillance. And then second is a policy implementation project, which is intended then to take this policy statement to the next level. To, in fact, go towards its implementation in community pediatric settings.
First, let me talk a bit about the 2006 policy statement. First of all, I'll mention that this statement will hopefully be in print in May or June of this year. So we're just about completed with our policy statement. And it has some specific goals in mind. One, and very importantly, the real goal here was not really to improve surveillance and screening. The real goal is to increase identification of children with developmental disorders by child health professionals. So, in fact, we have taken the concept a little step forward. Going from not a procedure, but a process that's going to have a specific goal for increased identification.
And how do we intend to get to that point? Through improving methods of surveillance and screening. And in particular, we've talked about a greater consideration of motor and communication disorders within it. And then very importantly, we've created an algorithm, which provides very concrete guidelines for pediatricians to follow. And with this algorithm, there's to be age‑targeted screening for pediatricians to implement in the health care setting. I keep say pediatricians. I should just say this is the whole realm of child health professionals. Family practitioners ‑‑ family practitioners, nurse practitioners and so on.
We also recognize that there are a lot of barriers, particularly, reimbursement, that have stood in the way of increasing this identification. So these are all things that are algorithm and our new policy statement are intended to address.
One other point that we are intending to address is to improve the medical assessment of children with developmental problems. So I personally have this cute picture of this adorable little girl up here. And this is just the kind of girl who we want our statement to identify. This little girl had some minor delays in motor development, had problems in talking. And in fact, this is a child with Williams Syndrome. Who, based upon previous guidelines, might be identified for early intervention, but he syndrome may never, in fact, be identified. So, in addition to looking towards getting children into an early intervention system and other developmental services, we're also looking for improving medical assessment by child health providers.
What we've done is taking what we think is an innovative approach to writing policy at the academy. And hopefully is going to be a model for future policy statements within the academy.
We've brought together several different groups in this supervising policy. So up until this point, this was strictly an effort of the Committee on Children with Disabilities. But the Committee on Children with Disabilities does not well represent people out in the community. And so, in fact, um, on several other parties within the academy have been put forth in this policy revision.
One, the Council on Children with Disabilities, that I've already described. Two, a section on developmental behavioral pediatrics, which represents people specially trained in governmental and behavioral pediatrics within the academy. Three, very importantly, the Bright Futures steering committee represented actually, in fact, by Paula Duncan and Joe Hagan, who are in the audience today. To try to coordinate what's ‑‑ what we are recommending with developmental screening and surveillance with the Bright Futures Initiative.
The Medical Home Initiative has been brought into this as well, because we need to promote the concept of medical home. And this surveillance and screening effort really best belongs in medical home. And then finally, had a medical informatician. And for those of you who don't know what that is, they call themselves our pediatric geeks. These are pediatricians who have special ‑‑ special knowledge about using computers, essentially.
What they've helped us do is to create an algorithm, a user friendly algorithm that people can implement in the office setting. And with the hope that, in fact, this can be tied into an electronic medical record as well. And then beyond me, there's a whole host of people from within the American Academy of Pediatric staff as well, which really helped make this all happen and pulled this all together.
Tom Tonniges, who was originally supposed to be our moderator, in fact, was a major mover in terms of bringing all these parties together, as well as other people from within the academy.
So, in fact, the new policy statement has a new title, to try to change the flavor of what we're trying to put forth here. And our new title is going to be Identifying Infants and Young Children with Developmental Disorders in the Medical Home, an Algorithm for Developmental Surveillance and Screening. So hopefully our title says it in and of itself that we are trying to take a policy statement into a new dimension.
The policy statement is going to have a series of new areas of content. Again, we're going to be emphasizing the identification of developmental disabilities. We are expanding the concept of Medical Home, and how to implement these screening initiatives in a Medical Home setting.
We've talked about the practice challenges that pediatricians and child health professionals have in putting this in place. And hopefully, we've created a system that will make these challenges ‑‑ that will decrease these challenges.
We've talked about reimbursement issues. And that is something that our statement cannot overcome. But hopefully, in putting these issues out there, we will see some improvement in reimbursement for these services.
Very importantly, we've created new working definitions. The concepts of surveillance and screening have been thrown out, without them being really very well‑defined. And in fact, what we've created are specific definitions on these concepts. Where surveillance is a continuous process of developmental monitoring through a child's lifetime. And screening is a periodic evaluation that involves specific screening instruments.
Also importantly, we've created the ‑‑ we've defined the concept of developmental evaluation. And that is the next step beyond surveillance and screening, for that children you are identifying as having a potential developmental problem. The evaluation is intended to look at developmental diagnosis, other medical diagnoses and specific treatment modalities.
There has been continual mix‑up with concept of evaluation and assessment within the field as well, and we've stuck to the term evaluation. Although, a lot of the federal guidelines uses the word assessment. Just for those who feel some confusion around the use of those terms.
I've mentioned already how we're going to be talking about medical evaluation as being an important adjunct to developmental screening and surveillance. We have really spoken about what the role is beyond the general pediatrician. What is the role for sub-specialists? What are the linkages that one has to have to make this proceed in an appropriate direction for the child?
The Medical Home is a critical concept here. That the child health care provider then can work at making sure that the child gets linked to all the appropriate services. Whether it be pediatric sub-specialists, whether it be early intervention, also parent support services, educational services and important community services that are necessary for these children.
The algorithm is going to recommend that developmental surveillance be performed at every well‑child visit, that developmental screening be specifically used at select age intervals ‑‑ select age intervals, with standardized screening tools when a concern is expressed. And there are going to be three points in time when that is, in fact, going to be recommended in the early childhood years.
If there's screening results are felt to be concerning, a child is supposed to be referred for further developmental and medical evaluations, as well as early intervention services. And then as a part of this whole process, Medical Home process, there should be a follow‑up system in place when referrals are being made. So that a child health care provider can continually track a child's developmental status over time.
These recommendations are being put forth so we assure that people are starting to use standardized screening instruments that have good sensitivities and specificities, and we are including a table of different screening tools that are available and that meet these criteria and all of which leads to early identification and early intervention.
So the question is, we're going to have this policy statement, we're putting it out there. It's going to be available May, June, 2006, hopefully.
So what's the next step? Well, we said that an important process here is not just creating a policy statement, but in fact it's implementation. So through the continued collaboration with these federal agencies, we are looking towards implementing these guidelines in a practice setting.
And the guidelines that are, of course, intended to be systemic statements that will assist the physician is decision making through the development of good guidelines, it still goes not insure they're going to be used in practice. So these projects are intended to implement them through specific strategies being put in place.
We're looking for the policy to be used in its algorithmic form to guide the decision making by the professional, that a the specific screening tool be used, that a quality improvement approach be used to bring the surveillance and screening into the process of care. That office procedures be changed, as appropriate, to make sure that this can happen. And that billing processes be reorganized to insure appropriate CPT codes be used. We will be including a table as well dealing with coding issues.
Parent involvement is going to be critical for making this thing happen as well. So we're looking for the child health provider to work with parents in developing an effective office system, including, in larger office settings, a planning or advisory board perhaps and to establish a practice champion who will lead the efforts within any individual practice.
The implementation project is being of called simply Developmental Surveillance and Screening Policy Implementation Project. It's going to involve implementing this policy in 15 (inaudible) pediatric practices. Our (inaudible) is going to be coming out in the very near future, looking for these 15 practices which are intended to reflect the broad range of pediatric practice throughout the United States.
The goals are going to be to see if the policy statement can be implemented efficiently and effectively into a practice setting. We want to learn to recognize strategies for its implementation. So we have a strategy in place, but we don't quite know how well it's going to work. We're going to be using these pilot lights to help revise the strategies that might necessary for its implementation. And look for specific outcomes out of implementing the algorithm.
So I'm going stop at this point. What I've tried to highlight here is not only our Developmental Surveillance and Screening Initiative, but the collaboration that we have between the academy, the CDC, and the MCHB in improving developmental surveillance and screening.
There are additional resources which are in your hand‑out here on this slide, if you wanted to find out more information and follow the progress of this over the coming months. Thank you.