Cystic Fibrosis Carrier Screening Educational Materials

Magyari, Trish
MACRO International, Inc.
Silver Spring, Maryland
SBIRGrant # R43 DK44794 (Funded by NIDDK. Member of CFSC)
Project Period Phase I: 9/30/91 - 3/31/92
Project Period Phase II: 1/1/93 - 12/31/94
Grant amount: $227,405
Implication: Social SCY SED

The long term objectives of this project are to develop an integrated package of public and professional education materials that would meet the pre-screening needs for education and informed consent of the public, and for the professional offering the testing. The materials would utilize innovative technology such as interactive computers, and would be developed for the average reader. Specific Phase I aims are to

1. assess pertinent content and innovative modes of delivery,
2. develop a preliminary design for the integrated package of materials,
3. complete a prototype of prescreening material for use with the general public,
4. prepare a final design document for Phase II.

1. to develop an integrated package of education materials that provides a thorough discussion of CF carrier screening which will allow the public to decide whether the test is appropriate for them, a companion video, and a professional education manual;
2. to conduct formative and outcome evaluation activities, with particular emphasis on validity, reliability and acceptability to potential users; evaluation activities will take place at a variety of clinical sites to allow for differences in setting, target population and testing modalities; and
3. to identify appropriate distribution modalities.

CF Carrier Testing: The Choice is Yours. Silver Spring: Macro International, 1994. (Educational Video)

The implementation of population-based cystic fibrosis carrier screening in the near future is dependent on the development of app ropriate educational materials. Following a successful Phase I feasibility study, the objective of this Phase II application is to develop, test and validate an integrated package of public and professional education materials that would meet the pre-screening needs for education and informed consent of the public, and for the professional offering the test. The materials consist of a brochure, an interactive videodisc (IVD), a companion video, and a professional education manual. Materials will be developed for a multicultural population of adults of reproductive age, and developed at the low-to-average reading level. Aims include:

1. to develop the integrated package of materials;
2. to conduct a formative and outcome evaluation utilizing expert review, focus groups, and field testing at appropriate clinical sites;
3. to identify appropriate distribution modalities.