This project was submitted to OHSR November, 1995 and determined to be exempt from IRB review. Speculation exists as to what impact the changing US Health care system will have on the provision of genetic services. To date, little out-come based research has been conducted on the value, impact and quality of genetic services. Such data is critical in order to provide the provision of quality, patient centered, community based genetic services. With the anticipated expansion of genetic knowledge arising from the Human Genome Project and genome-related research, this data becomes even more essential as the number of individuals needing genetic services grows exponentially. To ensure quality, community based genetic services in a health care system under increasing economic stresses, a clear understanding of consumer expectations and satisfaction with existing genetic service models is essential. A collaborative project in the Mid-Atlantic region was undertaken to assess genetic expectations and satisfaction with genetic services. We hypothesize that the level of patient satisfaction correlates with client expectation. To investigate this relationship, if any, between fulfillment of patient expectations and patient satisfaction, patients are currently being recruited at 11 participating genetic centers providing general (5) or prenatal (6) genetic services. Professional and consumer focus groups provided critical input for survey tool development and projects design. A series of survey instruments (pre-, post- and follow-up) were developed and validated in terms of their reliability (.831) at both a prenatal and general genetics center. Expected enrollment is 360 subjects; 120 seen for general genetic services and 240 for prenatal genetic services. At the prenatal site, the value of an educational pamphlet detailing a description of prenatal services will be assessed in respect to consumer expectation and satisfaction level. The study design calls for completion of a survey instrument immediately and directly after their genetic service appointment. Longitudinal follow-up through the use of a mail-out/mail back survey instrument will occur 3-6 months post visit. Data collection will take place from Fall, 1996 through Spring, 1997. Statistical analysis of data is planned for Spring, 1997.
