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APHA Scientific Session and Event Listing

Cary B. Kreutzer, MPH¹, David Helm, PhD², Dianne McBrien, MD, FAAP³, and Marion Taylor Baer, PhD¹. (1) Childrens Hospital Los Angeles, USC University Center For Excellence in Developmental Disabilities, 4650 Sunset Blvd., MS#53, Los Angeles, CA 90027, (323) 671-3830, ckreutzer@chla.usc.edu, (2) Children's Hospital Boston, Institiute for Community Inclusion, UCEDD, 300 Longwood Ave, Boston, MA 02115, (3) Children's Hospital of Iowa, Center for Disabilities and Development, UCEDD, 100 Hawkins Drive, Iowa City, IA 52242-1011

Objectives: To enhance the accessibility and quality of information provided to parents of children with Down syndrome at the time of diagnosis. Exceptional resources exist to meet the educational needs of families with a new diagnosis of Down syndrome; however, gap in accessing resources exist as the delivery of this information by physicians when counseling families is unsatisfactory. Methods: A formative evaluation of physicians, parents and state/national parent support organizations was conducted in three States (CA, IA, MA) to define resources, barriers and strategies for targeted health communication to effectively reach physicians with educational materials that can be shared with parents at the time of diagnosis. Results: 977 physicians (Pediatricians, Family Physicians) responded to a mailed survey, >90% prefer to be the health care professional delivering diagnostic news; however, < 6% report having adequate resources. The most useful resources requested include parent education materials, parent support organization contacts and clinical guidelines. Parents report that when physicians deliver information it is outdated and not delivered in a positive manner. Conclusion: The barriers physicians encounter in providing information to families includes lack of time, see very few patients with Down syndrome and difficulty accessing reliable, up-to-date, comprehensive materials. Over 80% of physicians rely on their own professional organizations when accessing resources and <10% look to national Down syndrome organizations. Educational materials should be quick to access, frequently updated, endorsed by professional organizations, at low or no cost, should be brief yet contain comprehensive information easy for parents to understand.

Learning Objectives:

• Participants will apply results of the formative evaluation of physician education practices to their own setting/program.
• Participants will identify strategies for developing training materials to educate primary care providers.
• Participants will evaluate the tools and strategies utilized in a health communications campaign targeting primary care providers.
• Participants will identify the steps required in developing a health communications/marketing initiative to assure optimum utilization of information when educating families about Down syndrome.

Keywords: Health Communications, Physicians

Related Web page: www.uscucedd.org

Presenting author's disclosure statement:

Not Answered

Handout (.pdf format, 153.2 kb)

Handout (.pdf format, 361.4 kb)