ECHO Researchers Test a Short Questionnaire for Measuring Autism-Related Behaviors in Children

Author(s): Kristen Lyall and Craig Newschaffer

Who sponsored this study?

This research was supported by the Environmental influences on Child Health Outcomes (ECHO) program, Office of The Director, National Institutes of Health.

What were the study results?

The researchers found that the short questionnaire did a good job predicting autism diagnosis and measuring social communication behaviors. However, more research is needed to see how the short questionnaire compares in other ways to the long questionnaire.

Footnote: Results reported here are for a single study. Other or future studies may provide new information or different results. You should not make changes to your health without first consulting your healthcare professional.

What was the study's impact?

This study suggests that the shorter version of the questionnaire is quicker, easier for participants to complete, and produces the same quality of work as the longer version. This work is also important because it may be helpful for people who do not meet the definition of ASD, but still face challenges in social communication and could benefit from help.

Why was this study needed?

Autism spectrum disorder (ASD) is a condition defined by challenges in social communication. Social communication refers to how we use language or words in social interactions with others, including how we may change words we use in different situations and with different people. This study wanted to see if a shorter version of a social communication questionnaire could predict ASD and other challenges related to social communication as correctly as a longer version. Having a shorter survey would mean that it would take participants less time to complete it. This study could also help identify questionnaires that could be used to find different social communication challenges in people with and without ASD.

Who was involved?

More than 3,000 people completed questionnaires for this study, including almost 200 parents who had a child with ASD between the age of 2-18. Participants were from research studies from across the United States.

What happened during the study?

Researchers used questionnaires from 10 different research projects in the United States to compare how well information from the shorter version predicted ASD diagnosis and measured broader behaviors in people without ASD diagnosis.

What happens next?

We now know that the shorter version of the questionnaire is comparable to the longer version, in terms of measuring these behaviors and predicting ASD diagnosis. However, more work is needed to confirm that the short questionnaire performs in all the same ways that the longer one does, since the study addressed only a few of these questions.

Note: This study is part of a project examining how different versions of this questionnaire measure ASD and broader, related social communication traits.

Where can I learn more?

More information on the questionnaire used in this study can be found through the publisher website and additional information on the shortened questionnaire can be found on PubMed .

Access the full journal article , titled “Distributional Properties and Criterion Validity of a Shortened Version of the Social Responsiveness Scale: Results from the ECHO Program and Implications for Social Communication Research.”

The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.

Published: September 17, 2020

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ECHO Researchers Test a Short Questionnaire for Measuring Autism-Related Behaviors in Children

The ACT NOW Clinical Practice Survey: Gaps in the Care of Infants With Neonatal Opioid Withdrawal Syndrome

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The ACT NOW Clinical Practice Survey: Gaps in the Care of Infants With Neonatal Opioid Withdrawal Syndrome

Author(s): Jessica Snowden, Akshatha, Robert Annett, et al

What was done?

In the fall of 2017, 54 sites within two research networks were surveyed. The sites were asked about the protocols and practices they used to treat NOWS infants. They were also asked how NOWS infants were diagnosed, what drugs they were given, what non-drug methods were used, and what areas of the hospital cared for NOWS infants.

What was found?

Sites could be divided into those that were NICUs (neonatal intensive care units) and those that were not ICUs (non-ICUs). NICUs were more likely to have protocols for screening mothers and diagnosing NOWs. They were also more likely to have protocols for how to give drugs for NOWS symptoms and encouraging breastfeeding. NICUs were more likely to use non-drug methods to treat NOWS infants.

Non-drug methods included swaddling, cuddling, massage, and low-stimulation environments. Morphine was the first drug of choice for NOWS symptoms at a majority of sites, regardless of their type.

What do the results mean?

Non-ICU sites need targeted training and standardized care plans for NOWS infants. However, it is not clear which practices are the most beneficial. Some variations in care may be best for some NOWS infants. The long-term effects of drug therapy and non-drug methods in these infants are unknown. The variations seen in this study show the need for multisite clinical trials in infants with NOWS. These studies will help define the best policies and practices to use with NOWS infants.

Why was this study conducted?

Neonatal opioid withdrawal syndrome (NOWS) often occurs when the mothers of unborn babies use opioids. The number of babies with NOWS has dramatically increased in the last 10 years due to the opioid crisis in the US. Doctors and hospitals have developed standard protocols on how best to care for these babies. The goal of this study was to collect information on how hospitals care for NOWS infants and to use this information for future clinical studies on the best methods to care for them.

Appreciation:

The authors especially thank the sites of the Institutional Development Award States Pediatric Clinical Trials Network and the Neonatal Research Network for contributing participating in the survey. The authors would also like to thank the Environmental Influences on Child Health Outcomes Program, the Eunice Kennedy Shriver National Institute of Child Health and Human Development, the National Center for Advancing Translational Sciences, and the National Institutes of Health for supporting this research.

You may learn more about this publication here: https://www.ncbi.nlm.nih.gov/pubmed/31324654

The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.

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The ACT NOW Clinical Practice Survey: Gaps in the Care of Infants With Neonatal Opioid Withdrawal Syndrome

ECHO Study Suggests Chronically Ill Children Can Still Have High Life Satisfaction

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ECHO Study Suggests Chronically Ill Children Can Still Have High Life Satisfaction

Author(s): Courtney K. Blackwell, Amy J. Elliott, Jody Ganiban, et al.

Who sponsored this study?

This research was supported by the Environmental influences on Child Health Outcomes (ECHO) program, Office of The Director, National Institutes of Health.

What were the study results?

Results suggested that children with at least one chronic illness had worse general health, but similar levels of life satisfaction as other children their age who do not have a chronic illness. Children (those with and without illness) who were less stressed and came from higher income families had higher life satisfaction. Overall, this study shows that chronic illnesses do not necessarily keep children from leading happy, satisfying lives.*

*Results reported here are for a single study. Other or future studies may provide new information or different results. You should not make changes to your health without first consulting your healthcare professional.

What was the study's impact?

This study is the first ECHO project to collect and combine new data from multiple cohorts to examine the topic of positive health. Findings highlight opportunities for healthcare professionals to broaden views of health from meaning the “absence of disease” to one where all children, regardless of illness, have well-being. This idea aligns with the Institute of Medicine’s definition of child health, and this study provides innovative measures to understand such outcomes. Results from this study may lead to future research on the relationship between certain chronic illnesses and child well-being. It may be particularly interesting for large research programs, such as ECHO, that have access to larger groups of children with different illnesses. Study findings also give researchers a way to address recent national initiatives, such as the Health Resources and Services Administration’s focus on creating programs that address children’s life satisfaction.

Why was this study needed?

The relationship between chronic illness and negative health outcomes is well-known. However, less is known about the relationship between chronic illness and positive health outcomes, such as life satisfaction, especially in children.

Who was involved?

Participants came from three ECHO Program cohorts. Participants were 1,113 caregivers who reported information for 1,253 children 5-9 years old.

Of these children:

About half were male (53%)
The majority were white (79%)
A tenth were Hispanic (10%)
A fifth had at least one chronic illness (20%)

What happened during the study?

Three ECHO cohorts surveyed caregivers on their children’s general health, life satisfaction, and stress between March 2017 and December 2017. Cohorts shared results from these surveys and data related to children’s medical conditions and family demographic information with the ECHO research team.

What happens next?

This study provides a start for more research on the relationship between certain chronic illnesses and children’s well-being as well as how chronic illness relates to the change in well-being over time.

Where can I learn more?

Access the full journal article, titled “General Health and Life Satisfaction in Children With Chronic Illness.”

For an overview of the research and findings, see the American Academy of Pediatrics press release.

The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.

Published: June 2019

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ECHO Study Suggests Chronically Ill Children Can Still Have High Life Satisfaction

ECHO Review Explores Statistical Approaches for Investigating Periods of Susceptibility in Children’s Environmental Health Research

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ECHO Review Explores Statistical Approaches for Investigating Periods of Susceptibility in Children's Environmental Health Research

Author(s): Jessie Buckley, Ghassan Hamra, and Joseph Braun

Who sponsored this study?

This research was supported by the Environmental influences on Child Health Outcomes (ECHO) program, Office of The Director, National Institutes of Health.

What were the study results?

We found that there are many different ways to study this topic. However, several new ways stand out as more advanced.*

*Results reported here are for a single study. Other or future studies may provide new information or different results. You should not make changes to your health without first consulting your healthcare professional.

What was the study's impact?

Learning about the ages that children are most likely to be affected by their environment is important. Knowing that information will help create programs, health practices, and policies that may help children better avoid things in their environment that can have a bad effect on them. This study finds recent improvements in ways of looking at which ages children are most affected. It also explains terms about this topic and why we need ways to study it.

Why was this study needed?

Many researchers are interested in studying the ages that children are most likely to be affected by environmental factors. There are many ways to study this topic, so we looked at several different ways to decide which ones were the best.

Who was involved?

There were no participants involved in this review. This is because we looked at different ways to use math to learn more information about a topic.

What happened during the study?

During this study, we reviewed different ways to study the age ranges that children are most likely to see effects from the environment around them. Environment is not just the outdoors, but other things about a child’s life, such as where they live, their family, what they eat, and more.

What happens next?

Our team will use this information to improve the design of future studies.

Where can I learn more?

Access the full journal article titled, “Statistical Approaches for Investigating Periods of Susceptibility in Children's Environmental Health Research.”

The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.

Published: March 2019

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ECHO Review Explores Statistical Approaches for Investigating Periods of Susceptibility in Children's Environmental Health Research

ECHO DISCOVERY

Co-Author Jessie Buckley presented Estimating effects of exposure mixtures on child health: Novel methods for solution-oriented ECHO research at a past ECHO Discovery webinar. You can view the presentation here.

MORE RESEARCH BY JESSIE BUCKLEY

Review of Prenatal Air Pollution Exposure and Brain Development

Author(s): Heather E. Volk, Frederica Perera, Joseph M. Braun, Samantha L. Kingsley, Kim Gray, Jessie Buckley, Jane E. Clougherty, Lisa A. Croen, Brenda Eskenazi, Megan Herting, Allan C. Just, Itai Kloog, Amy Margolis, Leslie A. McClure, Rachel Miller, Sarah Levine, Rosalind Wright

ECHO Review Finds No Strong Link Between Non-Persistent Chemical Exposures Found in Consumer Products and the Time It Takes Couples to Get Pregnant

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ECHO Review Finds No Strong Link Between Non-Persistent Chemical Exposures Found in Consumer Products and the Time It Takes Couples to Get Pregnant

Author(s): Alison E. Hipwell, Linda G. Kahn, Pam Factor-Litvak, et al

Who sponsored this study?

This research was supported by the Environmental influences on Child Health Outcomes (ECHO) program, Office of The Director, National Institutes of Health. This work was also supported by NIH grants P30 ES009089, R01ES013543, R01ES014393, R01ES08977, and T32ES023772.

What were the study results?

There were some signs that when either men, women, or both were exposed to certain chemicals, it took a longer for the couple to get pregnant. But more research needs to be done to truly understand those effects. There were also signs that certain chemicals did not have any effects.

*Results reported here are for a single review of specific studies during a 10-year period. Other or future studies may provide new information or different results. You should not make changes to your health without first consulting your healthcare professional.

What was the study's impact?

The papers we reviewed did not show a strong link between non-persistent chemicals and how long it takes to get pregnant. But, because there are not many studies like this, we concluded that more research is needed. While we wait for more research, it does not hurt to try to avoid certain chemicals in case they could affect the chances of becoming pregnant. We suggest common-sense lifestyle changes for men and women who would like to have a child. These include trying to avoid contact with certain non-persistent chemicals. Some ways to do this would be to use fewer plastic food containers and look at ingredient lists on personal care and cleaning products in order to avoid phthalates, parabens, TCS, benzophenones, and glycol ethers.

Why was this study needed?

Many products that people use contain non-persistent chemicals that can disrupt hormones. Non-persistent chemicals are chemicals that are broken down fairly quickly in the environment and in the human body. Therefore, non-persistent chemicals are often used in everyday household products. Some studies show these chemicals may affect people’s chance to get pregnant or may cause problems in pregnancy. These chemicals may also affect how long it takes for a couple to become pregnant, but not many studies have tried to answer this question. The goals of this study were to:

Review and summarize what is known about possible links between non-persistent chemicals and the time it takes to get pregnant.
To identify what information is missing in existing studies about this topic.
To present our results in a way that might change health policies and future research about chemicals in products that people use.

Who was involved?

This review looked at existing studies of healthy men and women who were in the age range to get pregnant. The studies were done in several different countries and ranged in size from 137 to 10,512 participants.

What happened during the study?

We used several sets of data to do a large search of research papers published from 2007 to 2017. We searched for articles about both common non-persistent chemicals and time to get pregnant. Our search found 3,456 articles. Two authors reviewed each of the articles we found to make sure they included information we needed. We found that 15 papers from 12 different studies, and then we pulled information from those for our review.

What happens next?

We are doing another review that will study whether there is a connection between chemicals that stay in the body for a long time and the time it takes to become pregnant.

Where can I learn more?

Access the full journal article titled, “Exposure to non-persistent chemicals in consumer products and fecundability: a systematic review” in Human Reproduction Update.

The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.

Published: January 1, 2019

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ECHO Review Finds No Strong Link Between Non-Persistent Chemical Exposures Found in Consumer Products and the Time It Takes Couples to Get Pregnant

Training as an Intervention to Decrease Medical Record Abstraction Errors Multicenter Studies

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Training as an Intervention to Decrease Medical Record Abstraction Errors Multicenter Studies

Author(s): Meredith Zozus, Leslie Young, Alan Simon, et al

What was done?

MRA training was delivered at the beginning of the study. The training consisted of a teaching session using an example case abstraction, followed by each trainee independently abstracting two test cases. Sixty-nine abstractors from 30 sites received the MRA training. The goal for each abstractor was to achieve an error rate no greater than 4.93%.

What was found?

Only 23% of the abstractors met their error rate goal during the training.

What do the results mean?

Study-specific MRA training can improve the quality of study data. This project had several problems. Creating the training test cases took a lot of time and effort. When the training test cases were created, they contained errors that were not discovered before training began. These errors were distracting and confusing to the abstractors. Lastly, there are many different EMR systems and it is impossible to train abstractors on all of them.

Why was this study conducted?

Searching medical records to find data for another use is called medical record abstraction (MRA). The process is prone to errors, and many people question the quality of the data. This project trained abstractors for a study that used MRA as the main source of data.

Appreciation:

The authors would like to thank the Eunice Kennedy Shriver National Institute of Child Health and Human Development and the National Institutes of Health for their support of this research.

You may learn more about this publication here: https://www.ncbi.nlm.nih.gov/pubmed/30741251

The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.

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Training as an Intervention to Decrease Medical Record Abstraction Errors Multicenter Studies

ECHO Study Suggests Exposure to Opioids During Pregnancy May Have Subtle Effects on Child Health Outcomes

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ECHO Study Suggests Exposure to Opioids During Pregnancy May Have Subtle Effects on Child Health Outcomes

Author(s): Elisabeth Conradt, Sheila Crowell and Barry Lester

Who sponsored this study?

This research was supported by the Environmental influences on Child Health Outcomes (ECHO) program, Office of The Director, National Institutes of Health.

What were the study results?

We were not able to learn what the short and long-term results of prenatal opioid exposure were because of the limitations with the existing information. Our best working hypothesis is that the effects of prenatal opioid exposure at birth and in infancy are small and subtle, but that the effects may grow as children age and have more demands on their attention at home and at school.

What was the study's impact?

We are still trying hard to learn about the short and long-term developmental effects of prenatal opioid exposure. We think that the effects of prenatal opioid exposure at birth and in infancy are subtle, and that they could be also be caused by the effects of other things such as poverty and early life stress. The effects in childhood may be stronger, but they could also be due to long-term stress exposure. More high-quality research is needed to answer the question, “how does prenatal opioid exposure affect the child?”

Why was this study needed?

We have very little information about how a mother’s use of opioids during pregnancy (prenatal opioid exposure) can affect child development. The information we have thus far is limited by not having many people to study and not being able to study other factors that may have an effect on child development, such as poverty. For this study, we reviewed what information we know so far and also made suggestions for how to improve knowledge of prenatal opioid exposure.

Who was involved?

This publication was a review of information that had already been published. After review, we came together as a group and decided what should be done next to answer the question, “how does prenatal opioid exposure affect the child?”

What happened during the study?

We reviewed over 50 studies to try to come up with some answers about how being exposed to opioids during pregnancy affects a child over short and long periods of time. We then discussed the limitations of the study and developed a list of what can be done in the future to fix these limitations. We concluded by describing how ECHO can help provide more information about this research topic.

What happens next?

We will use the ECHO data that are already collected to test how prenatal opioid exposure affects knowledge/understanding, behavior, and attention span in middle childhood. We will consider other possible factors such as poverty. We will also look at whether newborns who have Neonatal Abstinence Syndrome/Neonatal Opioid Withdrawal Syndrome (NAS/NOWS) have worse effects compared to newborns exposed to opioids who do not have NAS/NOWS.

Where can I learn more?

Access the full journal article, titled "Early life stress and environmental influences on the neurodevelopment of children with prenatal opioid exposure," published in Neurobiology of Stress.

Visit NIDA’s website to learn more about opioid use and prenatal opioid exposure: https://www.drugabuse.gov/drugs-abuse/opioids

Access the Harvard Center on the Developing Child website to understand how to reduce the negative effects of early life stress exposure: https://developingchild.harvard.edu/

The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.

Published: August 15, 2018

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ECHO Study Suggests Exposure to Opioids During Pregnancy May Have Subtle Effects on Child Health Outcomes

ECHO Study Suggests Specific Form of Vitamin E Prevents, Treats Bronchopulmonary Dysplasia

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ECHO Study Suggests Specific Form of Vitamin E Prevents, Treats Bronchopulmonary Dysplasia

Author(s): Cosby Stone, Cynthia McEvoy, Judy Aschner, et al

Who sponsored this research?

This research was supported by the Environmental influences on Child Health Outcomes (ECHO) program, Office of The Director, National Institutes of Health.

What were the study results?

The researchers learned:

There was not enough information in existing studies to recommend using vitamin E to prevent BPD.
A specific type of vitamin E called α-tocopherol isoform may be helpful in preventing or treating BPD.

*Results reported here are for a single research review. Other or future reviews or studies may provide new information or different results. You should not make changes to your health without first consulting your healthcare professional.

What was the study's impact?

The researchers think that studying the vitamin E α-tocopherol isoform would help provide more information on the benefits and risks of using it to prevent and treat BPD. This type of vitamin E is already associated with better health outcomes for conditions such as asthma, allergic airway swelling, and improved lung growth than other forms of vitamin E. However, without further studies, there is not enough information to recommend it now.

Why was this study needed?

Bronchopulmonary dysplasia (BPD) is a chronic lung disease that mostly affects newborns and infants. It occurs when a newborn or infants’ lungs are damaged from being on a ventilator (a machine that provides oxygen). We already know that there is a connection between low levels of vitamin E and the risk of BPD. Some doctors use vitamin E to help prevent BPD in newborns and infants. However, the last time researchers studied how vitamin E may affect BPD was 1991. Since then, we have learned more about how to reduce the risk of oxygen and ventilator-related lung injuries in newborns. We also know more about how vitamin E affects overall lung health. People only get vitamin E through their diet or supplements, like vitamins, so it’s important to understand if people need more of it.

What was the purpose of the study?

To update our knowledge and understanding of vitamin E and BPD.

Who was involved?

No study participants were involved in this research. The researchers involved are experts in neonatology (the study of newborns), epidemiology (understanding health in certain populations of people), pulmonary medicine (medicine related to the lungs) and environmental interventions (how changing something in a person’s environment affects health.

What happened during the study?

Researchers gathered and analyzed existing research on vitamin E. From this analysis, they suggest ideas for future research that could help us learn more about vitamin E and its role in preventing or treating BPD.

What happens next?

Researchers are interested in studying individual types of vitamin E as dietary supplements to improve lung health and as a potential way to treat or prevent BPD. We will need more and better data from research studies to understand if taking certain vitamin E isoforms can help reduce the risk of:

BPD for newborns when taken by a pregnant women at risk of preterm birth.
BPD for premature newborn when given to the newborn right after birth.
Having long-term lung problems that may continue later into life.

Where can I learn more?

Access the full journal article titled, “Update on Vitamin E and Its Potential Role in Preventing or Treating Bronchopulmonary Dysplasia.”

The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.

ePublished: March 7, 2018

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ECHO Study Suggests Specific Form of Vitamin E Prevents, Treats Bronchopulmonary Dysplasia