AMCHP 2006 ANNUAL CONFERENCE
EARLY CHILDHOOD: BUILDING THE FOUNDATION FOR LIFELONG HEALTH
March 4-8, 2006
LISA YOUNG: I work with the Pennsylvania Center for Autism Developmental Disabilities Research and Epidemiologist. We're based in the University of Pennsylvania School of Nursing. What we are is one of six centers ‑‑ let me move this up a little bit ‑‑ one of six centers who are funded by the Centers for Disease Control to conduct autism surveillance and research programs that address the number, incidence correlates and causes of autism and related developmental disabilities. We are currently working on a number of research projects which are all listed here. However, I'm only going to go into the screening projects for early detection and the First Signs Initiative a little bit later in the presentation.
Autism spectrum disorders refers to a wide spectrum of neuro-biological disorders that have three core features. Impairment in social interaction, impairment in verbal and nonverbal communication, and restrictive and repetitive impairment patterns of behavior. ASD's include autistic disorder, Asperger Syndrome, pervasive developmental delay not otherwise specified, Bretts disorder and childhood disintegrative disorder. One in six children is diagnosed with the developmental behavioral.
Autism is the third most common low incidence high severity developmental disability in early childhood. The average age of diagnosis for ASD is between ages three and six. Although parents typically notice problems earlier than age three.
Current prevalence studies indicate that one in every 166 children fall in the spectrum. Higher prevalence is found in males for every three to four males to every one female diagnosed with ASD and recurrence risk is 3 to 8% with families with a child already diagnosed for autism.
There are developmental red flags that may indicate an evaluation, further evaluation is necessary. Social red flags indicate, include a child who does not smile socially. One who has poor eye contact. A child who does not show interest in other children. Communication red flags include a child who does not respond to his or her name when called. A child who does not point to objects or wave bye‑bye, or one who used to have words and no longer does.
Behavior red flags include a child who is uncooperative or oppositional, one who gets fixated on doing things over and over or a child who is oversensitive to textures or sounds.
Early screening and diagnosis has led to positive outcomes. Early education and planning and treatment has been shown in the literature to lead to better outcomes for children with ASD.
Family support and training can be put into place earlier if these children are diagnosed at an early age. Early diagnosis reduces stress and shopping for medical providers, which leads to delivery of appropriate medical care.
All this leads us to the early identification research projects at the Pennsylvania cadre. I'm first going to go over some of the challenges encountered during our pilot project of the early screening program. And then review our current early screening program and pediatric primary care facility.
And then briefly review our first signs initiative. The specific aims of our early screening initiatives are to evaluate the short‑term effectiveness of training sessions by assessing knowledge gained to evaluate the long‑term effectiveness of the training sessions by assessing changes in general developmental and autism‑specific screening practices and to evaluate the efficacy of the training sessions by assessing the number of children referred for formal evaluation as a result of the screening. As a result of screening, and the number of children referred to early interventions services.
Now, our pilot project was conducted at a center in University City in Philadelphia. Some of the challenges that we encountered were education level for parent education level was low. Psychosocial stressors of the parents were high. Unfortunately, it's hard for parents to be concerned about development when their main concern is feeding and providing shelter for their child. And not getting shot. Yeah, go in the clinic and walking out the front door. That is a challenge for the parents.
It's also ‑‑ there's a 50% no‑show rate for parents coming to the clinic for the well child visit, and part of the problem was transportation issues and concerns with, as you pointed out, making it to clinic because of psychosocial problems and issues the parents were facing. It was also difficult explaining the HIPAA release form to the parents which led to difficulty in screening the children in a research setting.
There were also problems with scheduling the staff training because of large staff turnover in this particular practice.
Medical assistance at the practice for whatever reason, I'm not really sure, scored poorly on the pre and post tests of knowledge. And staff, the nurses and the doctors, were concerned about the time burden screening would pose on their already hectic schedules as well as their ability and comfort level to provide feedback to the parents.
Based on this information that we received from the pilot project, we used this information to refine our program and we took it to another program.
Now, we didn't just abandon the first program. Things are going well at the University City and they are providing screening there. I realized when I was going over my notes right before I started, before I came in here, that it looked like we just abandoned University City and moved on. We did not just abandon University City things are going well there. They have a screening program under way and things are going well. I just wanted to point out the challenges of getting things started, and that was our pilot project where we uncovered the challenges.
So in South Philadelphia, we took all those challenges, worked out the, not all of the challenges, we cannot work out transportation issues. So we still do have a 50% no‑show rate. It's actually around 47% in South Philadelphia. We do still have, you know, some of the parents do still worry about food and shelter for their children, so developmental concerns are not as high of a priority for them and things of those nature. And there are things that are beyond our control.
For the South Philadelphia project, we have another level of research that is based on this particular practice. They are currently using an electronic medical records, developmental milestone checklist, and they were interested in knowing the effectiveness of this developmental milestone checklist in comparison with a standardized tool. So as part of this project, we are also evaluating a general developmental tool in comparison to what their existing practice was.
So the goals of the South Philadelphia project are to assess the effectiveness of the current practice against a standardized tool and for this study we chose to use the parents' evaluation of developmental status. However we could have chose to use any of the developmental screening tools that are out there. This was just the one that we chose and we chose it because it's a parent‑based tool that parents can fill out while they are waiting to see the doctor, which will make for easier implementation when the pediatric care practices is on their own. We'll look at the level correlation between the tools and if the difference is less than 10%, then the developmental current checklist they're currently using will be considered sufficient.
And the second goal is to implement a routine standardized two‑tiered autism‑specific screening and the two tiers will be a general developmental tool, followed by use of the MCHAT.
And this is the activities that are going on in South Philadelphia right now. The first stop was to conduct a medical chart review, a baseline chart review was conducted to assess screening and referral patterns for the year prior to the training. This chart review was completed on 475 children who attended a total of 664 well visits. 51% of the sample were male. 45% of the children were African American. 28% were caution occasion. 6% were Asian, 3% Hispanic and 8% were other.
Most of the children who were other are biracial and for one reason or another I think they're listed as other because there isn't a biracial category on the form. Children were screened with a developmental milestones checklist for 99% of the well visits. So this is a practice that is pretty interested in developmental screening as it is already. Prior to our even conducting the training session.
Parents voiced developmental concerns during 15% of the well visits and pediatricians indicated developmental issues during 6% of the well visits. With an additional 2% having ambiguous results. Ambiguous results were they indicated that the child was developmentally appropriate except for language delay. Developmentally ‑‑ pediatricians do not want to come out and say that the way their checklist is set up, the child is appropriate or inappropriate. A pediatrician does not want to say that a child is developmentally inappropriate if they're 18 months old and they have three words. So there's a slight language delay. They don't want to come out and say oh this child is developmentally inappropriate for a language delay. So they're writing down things like developmentally appropriate except for language delay, because they're ambiguous on wanting to come out and say there's a problem, as far as in this particular office.
The second chart review was conducted. For three‑month period we went into the office and a research assistant conducted, met with the parents and had the parent complete the parents' evaluation and developmental status. Then a second chart review was conducted after the training session was conducted with the staff at the pediatric care center. And a comparison was made between what was found in the charts that the pediatrician's evaluation of the child and what was found on the parents evaluation of developmental status.
The second chart review was done to compare the results of the peds to the EMR developmental checklist, and both tools were completed on 83 children between the ages of 15 and 30 months. 55% were male. 47% African American. 34% Caucasian. I'm sure you can read the rest of the demographics.
Children at this point were screened with developmental milestone checklist, 100%. That's only up 1% from '99. 14% of parents voiced developmental concerns. And 6% of the visits pediatricians indicated ambiguous developmental issues again, developmentally appropriate except for language delay. Some of them were developmentally appropriate except for motor delay and for a 15 month old child who wasn't walking. And things of that nature.
Interestingly, parents for the peds, 30% scored on path A or path B. Now, path A was 3.6% of the parents. That indicates two or more predictive concerns for those who are not familiar with the peds. So that's possibly a 20 month old child who is no yet, does not yet have expressive language. And things of that nature. So after conducting the second chart review, we met with the doctors.
And there was not a, what was decided was that while we were implementing the second phase, which was bringing in the MCHAT into the research protocol we would continue using the peds and then to increase our number of peds to compare to the MCHAT. There wasn't a 10% discordance between the two tools, but there were some concerns considering the pediatricians were writing things like developmentally appropriate except for.
So what we're doing is we're going to continue with the peds and the developmental milestone checklist and then do the comparison again, see if, you know, what comes out in the wash and it's possible that we're going to use a different general developmental screener and check that to see if that's a more adequate tool compared to developmental milestone checklist or it's possible that some changes will be made to the developmental milestone checklist in order to make that a more adequate tool for the physicians to use, which isn't a possible situation.
Phase two of the screening protocol continued with the developmental screener along with the peds along side the developmental milestone checklist and the MCHAT was also completed. We have data for 150 children, however we just finished this part of the study and we have not analyzed any of that data just yet.
So the next steps are we're going to meet with, after we analyze the data, we will meet with the physicians in order to map out the office work flow so that the physicians and the nurses in the practice can take on the screening on their own.
We have both of the tools that the peds and the MCHAT, more importantly MCHAT are in the electronic medical database so they'll be electronically be able to complete these tools and for the two weeks we'll be available in office to work out any kind of logistic concerns and after that we'll be available for troubleshooting. After that we will continue to assess the program by evaluating screening and referrals at six‑month time intervals for a two‑year period.
As another part of our research programs for early identification, we are working in conjunction with the First Signs program which was founded by Nancy Wiseman, a parent of a child who was diagnosed with autism at I believe it was age two. The other collaborators are Susan Levy, Children's Hospital, Philadelphia and Francis Glasgow, Department of Pediatrics, Vanderbilt University. The learning objectives are to know the signs and diagnostic criteria for ASD, to recognize social emotional and communicational milestones, describe seven steps in developmental screening and to be able to recommend development and autism screening tools and describe how early intervention works in PA.
We have completed five sessions and there's another session scheduled for Harrisburg, and overall there's been an increase in knowledge for those who have attended. And 39% of respondents say they will change their screening practices and 29% say they will share information with colleagues, help to increase parent awareness of the early signs of autism and make resources for diagnosis and therapy available to family. Overall feedback on the training program has been positive.
Take home message is taking advantage of opportunities where children are seen regularly will maximize the number of children's screened, use of standardized methods will improve efficacy and it doesn't really matter where screening is done, it just matters that it is done.
I do not have hand outs, but if you have any questions or would like the presentation sent to you, this is my telephone number and e‑mail address.
Any questions?