Brighter Tomorrows: Supporting Families with Accurate Information About Down Syndrome

January 31, 2003

Principle Investigator: Harold Kleinert, EdD
Institution: University of Kentucky
Approximate Year 1 Funding: $101,727.00
RTOI #: 2003-01-13

The overall goal of this project is to improve the capacity of practicing physicians and residents in pediatrics, obstetrics/gynecology, and family practice 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. The project has four primary objectives:

  1. To develop two fully interactive Virtual Patient/Family Modules approved for continuing education units for pediatricians, obstetricians, and family practice physicians.
  2. To disseminate these modules via a hybrid CD ROM and web-based format to at least 100 physicians during Year II (and to at least 200 physicians per year thereafter), for the successful completion of continuing education credit.
  3. To embed these modules directly into the residency requirements for Pediatrics, Obstetrics, and Family Practice at the University of Kentucky (Year I) and to create similar requirements in at least two other medical schools (Year II).
  4. To evaluate the effectiveness of these modules in terms of performance data (decision points within modules), usability ratings, and changes in situational scale assessments.

In order to insure that family perspectives are incorporate through out the content of these modules, we will work with the Down Syndrome Association of Central Kentucky to identify five parent consultants to participate in the Core Development Team. The modules developed by this team will provide opportunities for the user to directly ask questions of the families in the virtual case studies and for the families to direct questions to the user. As a part of the formative evaluation of these modules, we will convene focus groups of practicing pediatricians, obstetricians, and family practitioners, residents in these three specialty areas, and family members to evaluate the usability and content of each module.

Summative evaluations will consist of user performance data (correctly responding to decision points within each module; accuracy of questions and responses to families; pre-post data on a situational scale to measure physician perceived comfort and competence level in informing families); and usability scale data on the effectiveness of the program interface.