Educating Providers About Down Syndrome Via an Integrated Marketing Module

January 31, 2003

Principle Investigator: Robert Jacobs, MD
Institution: Children's Hospital Los Angeles in collaboration with University of Massachusetts-Boston and University of Iowa
Project Directors: Cary Kreutzer, MPH, RD (Los Angeles), David Helm, PhD (Massachusetts), Dianne McBrien, MD (Iowa)
Approximate Year 1 Funding: $121,250.00
RTOI #: 2003-01-17

The goal of this project is to enhance the quality of information and services provided to children with Down syndrome and their families, and to develop a replicable marketing model for future training programs.

A large volume of exceptional training materials/resources on Down syndrome currently exists. However, the application of this research by medical providers when counseling parents is less than satisfactory. Current literature indicates that dissemination of information alone is not adequate to affect utilization by physicians. To effectively close the information gap, extensive primary research is needed to identify the specific needs and preferences of physicians and parents in terms of content, desired format, means of delivery, language, etc.

The model proposed herein relies heavily on user input, content experts, secondary research, and the continuous refinements of conceptual models. The resulting dissemination model will provide the tools to implement a nationwide launch of an ongoing, scalable training method for health care providers on relevant medical conditions. Project objectives and methodology include:

  1. Determine optimal information to provide to pediatricians and families. A national advisory committee (NAC), multi-organization, multi-discipline, will guide research and the module dissemination plan, and provide national support to maximize access to the targeted audience. Surveys, focus groups and discovery interviews conducted in three states (CA, MA, IA) will define training needs and delivery methodology.
  2. Develop and test training module. A panel of content experts will oversee content development for the training module, responding to provider and parent-defined needs.
  3. Create a mechanism for distribution in partnership with national organizations and CDC. Membership will develop the dissemination plan for the module and will by key to its wide distribution/dissemination.
  4. Evaluate the efficacy of the training module. Field testing of module will be performed in each of the three states.
  5. Develop recommended guidelines for replicating the model. Research methodology, national advisory committee and development of the product dissemination plan will be evaluated and lessons learned as well as recommendations for purposes of replicating the model will be submitted to CDC and AUCD.