Well Child Lens and The Autism Project
Well Child Lens is a website for parents and doctors that offers original professional documentary video content on all aspects of early detection, diagnosis, and intervention therapy for toddler-age children at risk for or diagnosed with an Autism Spectrum Disorder (ASD). The site was created to be part of the solution to a healthcare crisis: the need for early detection of autism in children under three years of age so that they can be started on therapies at a time when they can have the greatest impact, allow for the best possible outcomes, and potentially change a child's life. The centerpiece of this strategy and WellChildLens.com is the interactive Modified Checklist for Autism in Toddlers (iM-CHAT), a video-enhanced version of a validated, parent-report screening tool designed to assess risk of ASD in children under three years old.
The American Academy of Pediatrics (AAP) has mandated that every child be screened for an autism spectrum disorder twice before the age of three—at the 18-month and 24 or 30-month well child visits. Despite the AAP mandate, less than 50% of doctors perform any developmental screening at all, let alone autism-specific screening, at well-child visits. Well Child Lens and the iM-CHAT are designed to increase the number of children who are screened by allowing for easier online screening, educating doctors about autism spectrum disorders, and empowering parents to educate themselves and become the first line of defense in watching and promoting their child’s social, emotional, and communicative development, gaining the skills needed to recognize when and if any delays or at-risk behaviors emerge and alert their pediatrician as soon as possible.
Well Child Lens was originally conceived in 2006, as part of the Autism Spectrum Disorder Risk Alert (ASDRA) project, which was funded as a Phase I Small Business Innovation Research (SBIR) grant by the National Institutes of Health. That project culminated in a prototype website with a library of short documentaries about many aspects of autism spectrum disorders and related therapies in children five and under. In 2009, GeneticaLens won a continuing grant from the NIH, which funded Phase II of the project, resulting in: doubling raw footage; more than doubling the number of experts (both on camera and behind the scenes); expanding the library of filmed subjects; creating hundreds more documentaries, including a feature length film and two additional continuing medical education courses; and developing the entire website, database system, and related applications.
Over the coming months and years, we plan to grow Well Child Lens, adding community features, constantly updating our information to keep up with the frontlines of autism research, and improving and adding to our video library on a regular basis.
THE S.E.E. SYSTEM
Developed in house, S.E.E (Surveillance, Education, Enrichment) is a unique framework that integrates a video database, related text-based content, clinical guidance, and assessments. It is the result of close collaboration between multi-media producers and leading health care experts. It enables the sharing of information by researchers, professionals and non-professionals (caregivers and families) involved in the diagnosis, treatment and education of individuals with these disorders.
Specifically the S.E.E system is an interactive and dynamic web platform accessible from any internet connected device and designed to deliver public health information, primarily as video content, throughout the world. The platform also supports clinical quality digital screening tool applications for both patients and providers. Built with robust development architecture to support the organization and streaming of hundreds of documentary videos, this platform can sustain hundreds of concurrent active users, all participating in a digital community.
At the heart of our technology is the power of video: video captures the subtleties of symptoms and displays these within the context of a child’s active life, which is especially significant in neurological and brain based disorders, when signs and symptoms can be subtle and elusive even to the individual and family. Video captures the sounds, the place, the relationships, and all of the other variables that surround a person and give their actions meaning.
In collaboration with our expert partners we extensively videotape patients of diverse backgrounds, ages, and levels of disease severity in various settings (clinic, home, school, and others). We edit these videos into multiple formats – from feature length documentaries to short observational clips, adding text descriptions and keywords. The videos are then integrated into the S.E.E digital environment to facilitate the creation of video-enhanced assessment tests, educational features for families, and continuing medical education courses in detection, diagnosis, and treatment for health care providers.
As of today, the only tools the doctor has to assess a toddler for risk of an autism spectrum disorder are: (1) observation (looking for often-subtle symptoms that indicate a child might be on the spectrum), (2) talking to parents, and (3) using a validated autism-specific screener, such as the Modified Checklist for Autism in Toddlers (M-CHAT). While both physician observation and an accurate parent report are essential to create an informed decision about a child’s risk level, there is a reason that the AAP recommends using a screener like the M-CHAT for all children at both the 18 and 24 or 30 month well child visits.
Research has shown that it can be difficult for a pediatrician to judge autism risk in toddlers as at-risk behaviors may or may not manifest themselves within the average 20-minute check up. Additionally, the doctor has a limited amount of time to perform a physical assessment, record data and interview the parent, while a parent may not think to ask or mention certain behavioral problems, delays, or questions without a specific prompt for information. A validated screener helps to minimize the uncontrollable elements of an appointment by asking a specific group of questions that have been compiled by autism specialists to assess risk, and have been rigorously tested with thousands of patients. While a screener is very accurate in assessing risk for autism, it is important to mention that a developmental screener is not a diagnostic instrument. The assessment identifies children that are at risk for autism and require an evaluation by a developmental specialist, not all of whom will be diagnosed with a disorder.
The M-CHAT is a research validated screener for assessing autism risk in toddlers age 16 months to 36 months, and has been tested with over 15,000 parents and counting. It is also the most widely used and clinically accepted assessment tool for autism, nationally and internationally, and is recommended as part of the American Academy of Pediatrics Bright Futures toolkit. The most recent clinically validated version, the M-CHAT-Revised, is a parent questionnaire that consists of 20 "yes or no" questions and includes items such as: "If you point at a toy across the room, will your child look at it?" and "Does your child make unusual finger movements near his / her face?"
The Interactive Modified Checklist for Autism in Toddlers (iM-CHAT) is a special feature of Well Child Lens created only for the site in collaboration with creators of the original M-CHAT-R. The differences between the M-CHAT-R and iM-CHAT are various:
- The iM-CHAT is a digital version and provides instant results whereas the M-CHAT is paper-based and must be scored by hand.
- The iM-CHAT also includes within it a digital automated version of the M-CHAT Follow Up Interview, an optional add on to the M-CHAT conducted as an interview over the phone to help increase the accuracy of the assessment. The iM-CHAT turns that interview into a multiple-choice questionnaire that can be completed immediately following the initial set of questions (only given based on specific results of the initial questions).
- The iM-CHAT is based on a newer and more accurate 20-question version of the questionnaire, only just now being rolled out on paper as the M-CHAT-Revised.
However, the biggest difference between the iM-CHAT and all other versions of the M-CHAT that currently exist, digital or otherwise, is our video. Well Child Lens holds the license for the only video enhanced version of the M-CHAT assessment. Each of the 20 questions has an accompanying set of documentary video examples (each painstakingly examined and approved by the M-CHAT creators) to help assessment-takers understand the behaviors better, and therefore more accurately complete the questionnaire, allowing for improved results. With instant results, and an easily printable format ready to be taken directly to a child’s pediatrician, the iM-CHAT is the definitive version of the questionnaire and only available at Well Child Lens.
GeneticaLens is already involved in several collaborations regarding autism:
- The National Center on Birth Defects and Developmental Disabilities at the Centers for Disease Control (CDC) uses video clips, from the original ASDRA prototype, as part of their teaching tool for healthcare providers, Autism Case Training (ACT) Web-based Continuing Education.
- The American Academy of Pediatrics (AAP), after previewing the beta version of the website, wrote us in letters of support that Well Child Lens "showed promise for health care providers and for improved identification of autism spectrum disorder" and would consider collaborating in distribution once Well Child Lens is fully reviewed by the AAP.
- Autism Speaks, the foremost US nonprofit organization dedicated to investing in biomedical research and treatments for ASD, and educating and raising awareness on the effects of ASD on individuals, families and society, has stated in a letter of support that, after seeing a preview of the website, "We believe, after seeing your toolkit, that your addition of audio and video is an excellent way to reach families worldwide."
- GeneticaLens is conducting several pilot studies at pediatric practices. Pediatric health care providers are using the iM-CHAT for screening and surveillance. We have received positive feedback from both doctors and parents about the usability of the assessment tool - these results will help us better serve providers and parents.
- GeneticaLens has applied for an SBIR Phase IIB Grant that will fund clinical trials of the iM-CHAT as well as the testing all the digital tools. The result will be clinical validation of the iM-CHAT as well as the creation of a new product, Well Child Lens Autism – Clinical Version, a complete healthcare IT solution to screening and surveillance that fully integrates into electronic medical records.