Vivian Gabor: Welcome, everyone, to our teleconference today. I am Vivian Gabor, moderator for this DataSpeak teleconference by the Maternal and Child Health Bureau’s MCH Information Resource Center. As you all know, this is a follow-up to our November 28 live broadcast on the 20052006 National Survey of Children with Special Health Care Needs. I want everyone to know that this is being recorded. All the questions and answers and the recording will be posted on the DataSpeak Web site, along with the archives of the Web broadcast on the 28th. Today, we have all the speakers from the broadcast on the line. Dr. Michael Kogan, who is Director of the Office of Data and Program Development at the Maternal Child Health Bureau as you know, during the live Webcast, Dr. Kogan provided background on the survey and he discussed key findings on the survey at the national level. Hello, Michael.

Michael Kogan: Hello, Vivian.

Vivian Gabor: I am glad to have you here today. We also have Dr. Stephen Blumberg from the Centers for Disease Control and Prevention’s National Center for Health Statistics. As you know, Dr. Blumberg talked about the methodology and changes in the survey design and questions from the prior 2001 survey. Welcome, Stephen.

Stephen Blumberg: Good afternoon.

Vivian Gabor: And we have Dr. Christina Bethel, the Director of the Child and Adolescent Health Measurement Initiative at the Oregon Health and Science University. Dr. Bethel provided excellent information about the Data Resource Center. Welcome, Christina, and thanks for joining us again today.

We this teleconference will go until approximately 2:30 Eastern Standard Time. We want to give each of you an opportunity to ask the questions that you have. I know that’s why you called today got on the line today. So the operator will be taking your questions one at a time.

Before we proceed to our listeners, operator, can you tell our listeners give them directions as to how they indicate they have a question and want to get into the line here?

Operator: Of course. And the question and answer session will be conducted electronically. If you would like to ask a question, please do so by pressing the star key followed by the digit 1 on your touchtone telephone. If you are using a speaker phone, please make sure your mute function is turned off to allow your signal to reach our equipment. And once again, please press star-1 on your touchtone telephone to ask a question. We’ll pause for a moment.

Vivian Gabor: While we’re waiting for people to queue up to ask a question, let me read one of the questions that we got by email. Now, the question is to Christie Bethel: Can one find prevalence broken down into disease groups or illness by state that is, the survey data from the survey data on the DRC?

Christina Bethel: On the Data Resource Center, you can find the proportion of children with special health care needs whose parents indicate that they had one of a number of conditions that we are asked about, if not all conditions. But you definitely can go in and find out, of the conditions asked about, what proportion of children with special health care needs have parents who said that they currently have that condition. So yes.

Vivian Gabor: And by state?

Christina Bethel: It’s by state, yes, nationally and by state. There are a couple of conditions where the numbers are so small, even at a national level, that the state breakdown was not possible, but that’s rare.

Vivian Gabor: Thank you, Christina.

Michael Kogan: Christie, could I add something to that?

Christina Bethel: Absolutely.

Michael Kogan: This is Michael, and I just want a second. When Christie said that if you are looking at the state level, quite quickly the numbers are going to get rather small for a number of the conditions, there are certain conditions like allergies; asthma; attention deficit disorder; or even depression, anxiety, or other emotional problems, where the prevalence of that condition among children with special health care needs is over 20 percent. And so it may be possible to look at those conditions at the state level.

Vivian Gabor: Thanks, Michael. Operator, do we have any questions queued up?

Operator: We do. We have two questions at the moment, and the first will come from Elizabeth Ostadov (sp).

Elizabeth O.: My question is that what you said on the teleconference is that 19.9 percent of all households have children with special health care needs. I’m assuming that means households with children. And if that’s the case, I guess I’m interested in knowing, for the overall purposes, how many households actually have children.

Michael Kogan: Stephen?

Stephen Blumberg: I don’t have those estimates in front of me, but you certainly can produce those estimates using the data or going to the Data Resource Center. The we do estimate the prevalence of households with children who have children at least one child with special health care needs that can be estimated at the state level. That can be estimated for various demographic groups, such as by household poverty status. And along with those estimates of prevalence, you can get estimates of frequency as well.

Elizabeth O.: Thank you. So I’m assuming that means about one in five of households with children have at least one child who has special needs.

Stephen Blumberg: That’s correct. That was the estimate, if I recall correctly, from 2001. But don’t

Christina Bethel: It’s sorry it’s 21.9?

Michael Kogan: It is a little bit higher for 2005/6.

Christina Bethel: Yeah. About 22. Yeah.

Michael Kogan: Around 20.9 or 21.9.

Elizabeth O.: Okay. Thank you.

Operator: Our next question will come from Andy Penziner.

Andy Penziner: Thanks. Hi, everybody. I’m with the Special Health Care Needs Program in Iowa. And my question has more to do with the implications and utility of the survey. With respect to the medical home concept, the survey and everybody knows, for years, there’s been I guess a good term is an inconsistency of the definition. And now, recently, the there has been a collaborative definition that’s been offered by some of the professional physician associations, the family physicians, internists, and the osteopaths. And so my question is, what do people think is down the road with respect to standardization? And is Christie’s organization I know you’d been working I thought you’d been working on something, and I am just kind of wondering what people thought the future holds for our utility of a more standardized definition, because it gets frustrating when you say, “Well, you know, there are several,” and I don’t know exactly which one to pick.

Vivian Gabor: I can begin, but I think Michael also should

Michael Kogan: Sure.

Vivian Gabor: Well, first of all, there was a lot of effort to align the way that “medical home” is measured at least in the two national surveys, and so that’s and that process involved a lot of thought and consideration. And you’re right: The CAHMI also has worked on how to measure medical home, for example, using the CAPS survey, the Children with Chronic Conditions Survey, and have published some ways to do that. There’s we’re also doing a medical home manual that will specifically compare the different ways so far that has been used to measure, with the hopes that that will further the alignment of those methodologies or legitimately identify different ways to do it, depending on the meaning and purpose that you have in mind for measuring medical home, but that given that you have a common purpose, there would be a common method. So the medical home manual will be done soon. And hopefully, we’ll, first of all, even put out there what are we doing and what are the different rationales for why we might do it differently depending on whether we’re looking at a systems level or a provider level. There are reasons to measure it slightly differently, but given that you have the same meaning, to do it the same way is highly valuable. But we’re going to poise to make that happen and to push for that standardization, I believe, and, with a little more concerted effort, could achieve that in measure of time, I believe.

Michael Kogan: Hi, Andy, it’s Michael.

Andy Penziner: Hi, Michael.

Michael Kogan: I just wanted to second what Christie said and maybe expand on one of the points. And that is, when we started doing the surveys, when we were starting putting them together conceptually in 1999/1998, “medical home” was an evolving definition. And quite soon after our first survey, we recognized that we needed to adjust some of the variables to get a better conception, a better measurement of “medical home,” but also recognizing that we also recognize that medical home was going to be not just in the Children with Special Health Care Needs Survey but also the National Survey of Children’s Health. And to have a consistent definition, we had to we did a lot of work to bring the surveys in mind. So one would be able to measure “medical home” in the same way from the National Survey of Children’s Health to the this way, this Children with Special Health Care Needs Survey. And so we recognize the need for the standardization of the definition.

Andy Penziner: Thank you. I think that encompassing the population different populations of interest, nonspecial needs populations as well as a wider age range, is going to probably prove to be valuable in spreading the concept. So thanks, that’s encouraging. I appreciate it.

Vivian Gabor: I did have one question that came in by email. I just wanted to ask. I think it’s of you, Stephen: Are the survey datasets available for linkages with other surveys or datasets?

Stephen Blumberg: At the state level, certainly anyone can use the datasets that we provide online and then link state-level data to those datasets. For people who may be interested in doing finer multilevel or contextual analyses, where they may have datasets that they want to link at the county or ZIP code level, that information is available. It is not publicly released due to confidentiality reasons, but the datasets that include county and ZIP code are available through the NCHS Research Data Center. Individuals who are interested can apply to the Research Data Center to come use those datasets to link their own data to them and do their analyses within the Research Data Center, which protects the confidentiality of our respondents. As for being able to link to other datasets at a person level, no, that information is not available.

Vivian Gabor: Thank you. Operator, do we have any other questions on the line?

Operator: Yes, we do. We have a follow-up question from Elizabeth Ostadov.

Elizabeth O.: What I wanted to know is if there’ll be an MCH journal devoted to articles written using this new dataset.

Michael Kogan: This is Michael. I have put in a request to for funding for a special issue. I will put out requests for proposals for papers on a number of listservs.

Elizabeth O.: Sounds good. Thank you.

Michael Kogan: Sure.

Vivian Gabor: And another follow-up question from Andy Penziner.

Andy Penziner: Hi, everybody. Yeah, not exactly a follow-up, but as long as boy, it feels like my personal time with you, S oh, and Elizabeth and others who are being quiet. But with respect to national performance measure, I think it’s #5, the one about services being organized so that families can use them easily. Has was the survey question changed? Because I remember there was kind of only one element for that one, and it was sort of a reiteration of that question specifically. Do the new care coordination questions fall into that particular performance measure, or do they fall back into the medical home one? W in other words, was that measure would assessing a value for that measure change in the methodology for this round?

Stephen Blumberg: I can go ahead and answer that. This is Stephen. The question that assesses that outcome was changed for 2005/2006. You may remember in 2001 that the question asked parents to evaluate the organization of community-based services for their child. Now, we found through talking with interviewers that many parents really didn’t understand, first, in some cases, what we meant by community-based systems of services, but others didn’t understand what we meant by the organization of those services. So for 2005/6, the question was simplified to ask whether or not parents had experienced any difficulties trying to use community-based services. Again, it is a single question assessing that outcome, and we have already had some discussions there may be interest in the next round of the survey to try to expand that somewhat to get a better measurement for that outcome. If anyone has suggestions or ideas about how to do that, would be welcome to hear from you. As for care coordination, we did do some extensive changes to the care coordination sections and the transition services sections of the 2005/6 questionnaires, but care coordination itself is still part of the medical home outcome and not the service use outcome.

Andy Penziner: Okay. Thank you so much. That helps. Thanks.

Christina Bethel: Vivian, I was thinking to add to Stephen’s comments, while others are thinking of questions, that there are various places where people can go to learn more about the comparison between 2001 and 2005, as well as how the indicators of outcomes are constructed. I mentioned in my talk that, you know, you could on the DRC, you can click on any evidence of the indicators that are in the search tool, and a box will pop up telling you the basics of how it was measured. There’s also other documents on the homepage you can click on to explicitly compare, and a couple of levels of detail in that. And then, of course, the SLAITS Web site has details as well. So just want to let people to know that there are materials that they can access that try to make it as easy as possible to actually what changed and also what’s in the measures and how those were constructed.

Stephen Blumberg: I will follow that with an announcement of the reports that highlights the state-level prevalence of success with each of the outcomes and each of the components within the outcomes will be posted on the SLAITS Web site sometime this week. And that document also includes a table describing the changes from 2001 to 2005/6. That document also includes the FAST program that was used to calculate each of the estimates. So, for those analysts, who may be interested in trying to compute a medical home measure or measure of a core outcome or of care coordination, they’ll be able to look at that program and see how we went about doing that.

Vivian Gabor: When you say “outcomes,” these are the MCH core outcomes?

Michael Kogan: That’s correct, the national performance measures.

Vivian Gabor: Operator, do we have any more questions?

Operator: We do. Andy Penziner, please go ahead.

Andy Penziner: Thanks. Given the changes in the questions for assessing some of the outcomes between the 2001 and 2006 survey, do you recommend that we can confidently make those overtime comparisons descriptively, or do we how much caution do we need to include in our presentations with respect to changing the question or the wording of the question?

Stephen Blumberg: In some cases, the changes were either nonexistent or were so minor that comparisons are reliable. In other cases, the changes were substantial enough that caution should be exercised in making comparisons from 2001 to 2005/6. Some suggestions for which are comparable and which are not are available in documents on the Data Resource Center, but to some extent, those are discussions that you may need to have with your own analysts and with others who are good at interpreting data to understand whether a large change, for instance, could be solely due to the questionnaire or may reflect changes within the state.

Vivian Gabor: Yeah, and just to add to that, we have on the Data Resource Center a state profile you can compare to where we already allow you compare 2001 and 2005 at your state level. And there, in our patients as Stephen noted above, the comparability, which was a lot of discussion. So, at the outcome level, maybe it’s not com several of them are not comparable, but if you start to unbundle it and look at some sort of specific items, some of the specific items are the same. And it really requires you to look at it carefully, because if you, for example, improved or did not improve, but the item changed, it may mean very different, once you look at what changed and how the questions were asked your interpretation of that shift in your score.

Andy Penziner: Okey-dokey. Thank you.

Operator: Okay. And at this time, there are no questions in the queue.