The goals of this collaborative study are to: 1) assess expectations among genetic clients seeking genetic services in the Mid-Atlantic region; 2) determine the extent to which client's expectations are met; 3) determine if an association exists between levels of satisfaction and the extent to which expectations are met and 4) examine the degree of concordance between the providers perception of and the clients reported levels of satisfaction. Random selection of 6 prenatal and 6 pediatric/medical genetic centers was made in the Mid-Atlantic region. From these centers, 217 patients completed a pre- and post-appointment questionnaire containing 3 categories of questions (child impact issues, issues to discuss, life/relationship impact issues). Each subject's primary genetic provider completed a similar questionnaire asking the provider's opinion as to what extent each issue was discussed, their personal satisfaction with the visit and their perception of the client's level of satisfaction. . The five most important issues for the medical genetics clients were: 1) to discover availability of medical treatment / management; 2) to find out what is wrong; 3) to learn coping skills; 4) to discover the possibility of a cure, and 5) to find out the chance of the condition occurring in me or my child. In summary, initial data analysis suggests: 1) both pediatric and prenatal clients are generally satisfied; 2) satisfaction levels are higher for pediatric than for prenatal clients; 3) extraneous comments are generally positive with negative feedback reflecting frustration with waiting periods, and 4) relationship issues were seen as the least important issues to be discussed. A third and final questionnaire (N 49) was obtained from the pediatric cohort one year post evaluation to determine if level of satisfaction had changed after a follow-up visit, receipt of diagnostic test results and receipt of. Final analysis is in progress and final results will be submitted for publication.
