Brighter Tomorrows: Transforming Existing Down Syndrome Professional Educational Tools for Broader Dissemination and Use

December 3, 2007

PI: Harold Kleinert, EdD, University of Kentucky

The overall goal of this project is to improve the capacity of practicing physicians and residents in pediatrics, and obstetrics/gynecology to provide accurate, well-balanced information and supportive counseling to families receiving the news of a diagnosis of Down syndrome in their child, either at birth or in utero. We will do this by: 1) re-formatting and streamlining our current Brighter Tomorrows Modules into a 60 minute web-based module, suitable for both physician training and Continuing Medical Education units, 2) developing a 10 minute "refresher" version that physicians could quickly review before delivering a diagnosis of Down syndrome to a family, 3) piloting those products with at least three Pediatric and three Obstetrics and Gynecology Residency Programs across the country, 4) developing a Family Version of Brighter Tomorrows directly linked to the major parent and advocacy organizations for Down syndrome, and 5) working with the American College of Obstetrics and Gynecology and the American Academy of Pediatrics to establish a mechanism for practicing physicians to receive Continuing Medical Education credit for completion of the web-based physician's tool.

To evaluate the effectiveness of the web-based tools with resident physicians, we will ask participants to complete pre and post tests in knowledge of Down syndrome and perceived levels of comfort in delivering a diagnosis to a family. We will also ask all participating physicians to complete a brief Usability Scale on the effectiveness of the web-based version of Brighter Tomorrows, and conduct a limited number of focused interviews with participant residents to obtain more in-depth perceptions of the effectiveness of the tool. We will then use the effectiveness and usability/satisfaction data to make any necessary revisions to the web-based tools for physicians. For the Family Version, we will ask both the National Down Syndrome Society and the National Down Syndrome Congress to review the Family website before its launch. We will also include a "Critical Incident" link to the Website for families to indicate what they most value in their own interactions with physicians and to convey what additional kinds of information they need at this important juncture in their lives. Again, we will use the feedback provided by both national Down syndrome advocacy organizations, and by individual families through the critical incident technique, to make any necessary revisions to the Family Version before the completion of the final Family Version. The Family version will be made available in both English and Spanish.