Maternal and Child Health Research Program

Advancing Applied MCH Research

Improving Early Identification of Autism in Latino Children - September 18, 2012

Transcript

Robin Harwood, PhD – Health Scientist, Research Program, Maternal and Child Health Bureau
Welcome to the Maternal and Child Health Research Program Podcast series.  This series features the latest information and findings of investigator initiated research projects supported by the R40 MCH Research Program.  I’m Robin Harwood, a health scientist with the MCH Research Program which is administered by the Office of Epidemiology and Research in the Maternal and Child Health Bureau of the Health Resources and Services Administration.  The MCH Research Program has a long and rich history of supporting efforts to address disparities in the health of mothers and children from racial and ethnic minority communities.  Today we’ll be talking about improved early identification of autism in Latino children.  I’m very pleased to welcome Dr. Bruno Anthony.  He is a child clinical psychologist and Professor of Pediatrics and Psychiatry and Director of Research and Evaluation at the Center for Child and Human Development at Georgetown University.  He has authored numerous publications and presented widely regarding effective treatment for children with developmental challenges and their families.  Thank you so much for joining us today.

Bruno Anthony, PhD – Professor of Pediatrics and Psychiatry, Director of Research and Evaluation, Center for Child and Human Development at Georgetown University
Thanks very much Robin, I really appreciate you asking me. 

Robin Harwood, PhD – Health Scientist, Research Program, Maternal and Child Health Bureau 
I wanted to start out by asking you to tell us a little bit about what the project’s major goals are.

Bruno Anthony, PhD – Professor of Pediatrics and Psychiatry, Director of Research and Evaluation, Center for Child and Human Development at Georgetown University 
Sure.  The overall goal really was to develop and test methods to increase the number of Latino kids who are first of all screened at an early age, between 18 and 30 months, for autism and developmental delays, with an evidence-based measure in primary care.  And then, we also hoped to increase the number who are referred for evaluation, further evaluation, and treatment with reduced delay.  And finally we want to increase the number who also receive services when they’re needed. 

So to do this, we felt strongly that we needed a multipronged approach.  First we needed to increase the awareness of developmental milestones in Latino parents.  We wanted to do that through appropriate outreach activities that were compatible with the community.  We needed to figure out how to do this in an effective way and so what that required was to really learn from the community how best to get information to them and from who, and by what means.  That’s the first prong.  The second prong was we felt we needed an evidence-based screening program, but it had to be adapted specifically to the needs of Latino families.  The third prong was to develop and implement a screening process in primary care, and the key thing about this is that it needed to be feasible, acceptable and successful within the primary care organization.  And then the final thing, and one of the most important is, we felt we needed a really strong family navigation program to help families take the next step when it was needed.  If there was a positive screen, we needed to help them get to the right assessment and the right providers. 

Robin Harwood, PhD – Health Scientist, Research Program, Maternal and Child Health Bureau 
Great.  Can you tell us a little bit about what motivated you to do this study?

Bruno Anthony, PhD – Professor of Pediatrics and Psychiatry, Director of Research and Evaluation, Center for Child and Human Development at Georgetown University 
This was really motivated by our partners at Unity Healthcare, which is in the upper Cardozo area of DC, and it has 17,000 pediatric visits a year, which is quite a lot, and they provide primarily Latino families.  And what we found and heard from them was this real desire to set up a screening program, because essentially they were not doing any screening in pediatric primary care and they were not making any ASD identifications or diagnoses, and they felt this was a real lack.  And this fit in with the data that showed that there was strong evidence of disparities in the rates of diagnosis and delays in and use of services for Latino versus non-Latino kids.  And then we know that early diagnosis of ASD and developmental delays leads to better interventions and faster intervention.  So, the motivation first of all was try to address these difficulties.

And then the other motivation was that although there are evidence-based screening tools that have shown to facilitate, to increase the rates of ASD diagnoses, the fact is they’re not often used in primary care, for many reasons.  It could be time constraints or reimbursement or referral concerns.  Sometimes it’s unfamiliarity with the tool itself.  So we needed to get past that barrier somehow.  So those were really the motivations for doing this.  And I guess the final one is that we really felt strongly in the notion that really helping families required the input of other families who had gone through these kinds of processes before, that they had had a kid with these kinds of difficulties and have been successful in getting services when they needed it.  So, we wanted to pull those things together and I think that that’s what motivated our study.

Robin Harwood, PhD – Health Scientist, Research Program, Maternal and Child Health Bureau 
Can you tell me a little bit about what you’ve learned about the use of screening instruments in your study?

Bruno Anthony, PhD – Professor of Pediatrics and Psychiatry, Director of Research and Evaluation, Center for Child and Human Development at Georgetown University 
Yeah.  I think we’ve learned a lot.  So first of all, the screening instrument that we decided on was the M-CHAT and as you know, the M-CHAT is filled out by families.  And the first thing that was clear from our discussions with both families and with providers was that just wasn’t going to work with this community.  There are many people who had literacy issues, there were many people who really didn’t understand many of the questions asked.  So it was clear that the first thing we needed was oral administration and the only way we knew this was really to go out and talk with families about how they would feel comfortable in doing something like this screening.

So what we did was we really, and we think it is the key process for adapting screening for use with people from different linguistic cultural backgrounds is first of all, going out in the community where you want to use this, and finding out what is acceptable and what’s not acceptable.  What are useful ways to conduct screenings and what aren’t.  And I think what we did in this case was to find out that we needed oral administration, that they are most comfortable with face-to-face contact. And that we needed a follow up protocol right as we were doing the screen, to be able to ask follow up questions that may be needed to clarify some of their responses to the screen. 

And we had actually gone through a formal process called cognitive testing, which is where we asked families to complete the screen and then we asked them after each time, what their understanding of each of the questions was, so we could really get a good idea of how they viewed this screen.  And what we found was many consistent difficulties with questions on the M-CHAT.  And so we developed a specific protocol which we felt got a more valid response.  And I think that that is something that is not done regularly and something that the field really needs to take account of.

Robin Harwood, PhD – Health Scientist, Research Program, Maternal and Child Health Bureau 
Yeah, that seems really valuable.  Can you say more about what you think are some of the truly unique contributions of this project to autism research?

Bruno Anthony, PhD – Professor of Pediatrics and Psychiatry, Director of Research and Evaluation, Center for Child and Human Development at Georgetown University 
Yes.  I think that one of the things that we’ve paid a lot of attention to is the need to apply what are called common factors in the process of building this screening program, and to get adequate identification and treatment of ASD, particularly for families with different cultures.  And what I mean by common factors are effective engagement strategies, ways to increase partnerships and the like, which will increase the likelihood of families bringing up concerns, developmental concerns, to providers.  This is something that our partners at Unity have initiated really from the point where the family comes into the waiting room through initial check-in, through their visit, that the focus really is on trying to increase the sense of relationship and increase the sense of partnerships between families and providers.  And we felt in this way it aided the families in feeling comfortable in disclosing concerns.  So, I think that’s one of the first contributions, is the way that we’ve been able to infuse that and train both families and providers in how to come together to really understand developmental delays.

I’ll give you an example.  We ask the families about the barriers to talking about developmental delays with providers and they said, well, they didn’t feel like the providers were interested in asking those kinds of questions.  You ask providers the question and they said, they didn’t think families were interested in those questions either, developmental delay questions.  So, both people felt like they wanted to ask those questions, but they just weren’t connecting.  And so these kinds of common factors help folks connect on those kinds of really important issues.

Robin Harwood, PhD – Health Scientist, Research Program, Maternal and Child Health Bureau 
Wow. 

Bruno Anthony, PhD – Professor of Pediatrics and Psychiatry, Director of Research and Evaluation, Center for Child and Human Development at Georgetown University 
Other contributions which I think are important is how to implement a screening program in primary care, the process of doing that.  Because as you know, it’s not a common thing for these kinds of screening programs to be inaugurated for many reasons; time constraints, logistics.  We’ve been able, I think, to develop a pretty consistent way of approaching each of those barriers that might get in the way of the screening program and having proven that certain kinds of implementation strategies really work.  And I think the final contribution of this kind of research is the importance of family navigation in getting folks to the right place.  And we have bilingual and bicultural parents with lived experience who are doing this work for us.  They’re providing ongoing consultation with families and they’re a resource for all families.  They conduct some of the M-CHAT screenings, they follow up on critical questions, they support linkages.  This kind of service is something that really serves families and providers in an important way.

 

Robin Harwood, PhD – Health Scientist, Research Program, Maternal and Child Health Bureau 
Yeah, that does sound really important.  I’m wondering if you can say more about the implications of your research for the development of medical homes for families.

Bruno Anthony, PhD – Professor of Pediatrics and Psychiatry, Director of Research and Evaluation, Center for Child and Human Development at Georgetown University 
The idea about medical homes is that they really serve those kinds of kids with sort of complicated either developmental or medical issues in a way that prevents this feeling that their care is very fragmented.  And the hope is that the primary care site would be the place where all the different parts of the system that families with kids with different kinds of developmental delays can come together to really form a plan that makes sense for them.  And it think as this kind of idea develops, the notion of having family members who have gone through the system themselves successfully be part of this process will both I think help in the engagement of families, I think it will also take some of the load off providers, who feel very much burdened by these kinds of very complicated cases.  So, I think that as we move ahead, I think thinking about family navigators are the key part of the medical home is something that will be very valuable.

Robin Harwood, PhD – Health Scientist, Research Program, Maternal and Child Health Bureau 
It just seems like it speaks right to the issue of addressing disparities among minorities…

Bruno Anthony, PhD – Professor of Pediatrics and Psychiatry, Director of Research and Evaluation, Center for Child and Human Development at Georgetown University 
As well, yes, absolutely.

Robin Harwood, PhD – Health Scientist, Research Program, Maternal and Child Health Bureau 
And finally, what are your thoughts on how a program like this might be sustained over time, after the grant support period is over?

Bruno Anthony, PhD – Professor of Pediatrics and Psychiatry, Director of Research and Evaluation, Center for Child and Human Development at Georgetown University 
Well, we’ve been thinking a lot about this right from the beginning, and we have such good relationships with our partners at Unity Care.  And I think…the idea of how you move from supported screening, which is supported by the grant, to the same kind of process, but being independent of the grant.  So, we want to think about the different areas that we’ve been involved in.  So first of all, in outreach.  And so we’ve been trying as we’ve been moving along in the grant, to connect with ongoing programs that are residing in the primary care site, such as WIC, for instance.  Or their other community outreach and relations departments.  We’ve been helping them set up structures and logistics of events like developmental fairs and small groups called Charlas, where parents can come and talk about developmental issues.  Also calling on ongoing support from all the organizations who are in our community advisory board and other community groups, so that this outreach function, which we’ve been developing and coordinating, can actually be spread into those programs which were already operating. 

Training.  I think that we’ve been doing training with providers and I think that one of the things that we’re hoping to do is to continue linkages with academic and service providers to continue the kinds of training we’ve been doing, both for medical providers, but also for administrative staff, for nurses, for medical assistants.  We’re hoping that those kinds of things just will continue.  And for the screening, during the course of this project we’ve been slowly moving away from our staff doing many of the screenings, to the medical staff at Unity.  So, one thing we’ve been doing is overcoming the barrier which providers feel that this kind of screening process will take a lot of time and is overwhelming to them.  And we found in our training that if we can get them to just do some of these, it turns out that in fact, they feel oh, it isn’t so difficult and it can be done quickly.  And so the more that we can do that, into the gestalt of the place, of the organization, the more that we can turn over some of that screening to the medical staff themselves.

We’ve also been investigating some interesting kinds of tools.  Because we can’t just have families fill out these, “read the screen and fill them out,” we’ve been starting to develop some visual screening tools using videos and audio presentations, which will allow, we think, the families to do these kinds of screens by themselves, without so much support.  And finally, we’ve been doing a lot of cross-training with nurses, medical assistants, physicians and social workers, everybody, so that the burden of screening can go across different disciplines.  And finally the last is that we want to make connections between the primary care sites and the family organizations that are in the local area.  Both because they can provide resources for the primary care site and second, we’re trying to put in procedures to make easy connections between those local centers, which can again, take over some of that navigation role that we think is so critical.  So that’s how we’ve been hoping that we’ll develop that sort of sustained process over time.

Robin Harwood, PhD – Health Scientist, Research Program, Maternal and Child Health Bureau 
Well thank you so much Dr. Anthony.  This sounds like a wonderful contribution to the field and we hope to hear more about it once we start seeing your publications coming out of it.

Bruno Anthony, PhD – Professor of Pediatrics and Psychiatry, Director of Research and Evaluation, Center for Child and Human Development at Georgetown University 
That’s right.  Although our early results show an incredible increase in the number of screens and referrals in the first six months of the program. 

Robin Harwood, PhD – Health Scientist, Research Program, Maternal and Child Health Bureau 
That’s great.  Thank you so much for joining us today.

Bruno Anthony, PhD – Professor of Pediatrics and Psychiatry, Director of Research and Evaluation, Center for Child and Human Development at Georgetown University 
Thank you.

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