A survey was developed to send to patients following their genetic counseling appointments to assess their perceptions of the genetic consultation process. Surveys were sent only to patients for whom the entire follow up procedure was completed within three months of their appointment.

This survey questioned the wait time to obtain an appointment, the referral process, billing procedures, counseling session with the geneticist and follow up procedures. Most respondents stated they understood the purpose of their referral and the necessity and significance of the extensive amount of information required prior to the consultation.

Survey comments included: the geneticist was reassuring to the family at a time when it was needed; the geneticist was very thorough and caring, and that several patients were glad they could visit with him at length about their concerns. The patient and family members stated that they felt respected, valued, and unrushed. Survey respondents also stated that they felt the genetic professional explained the condition in a way that they could understand, and allowed time for questions and further discussion about the impact of the genetic information to their healthcare. Although some families had to wait more than 30 minutes for their appointment, the geneticist apologized and explained that some appointments may take more than their allotted time.

Seventy-six percent of the survey respondents said they received a follow up letter in a timely manner and that the information was easy to understand. Appropriate referrals were made if needed, as well as information about helpful resources. Some parents expressed disappointment at not receiving follow up information in a more timely manner.

Although not all patients had received a bill before completing the questionnaire, those that had, stated that they felt the fee for the genetic consultation was appropriate and that their information was kept confidential.

Most responses to the question "What did you find most helpful about the genetic counseling appointment" pertained to the kindness, patience, empathy and reassurance offered by the clinical geneticist. Other comments included the thoroughness of the physical examinations and the ability to answer questions in very knowledgeable and understandable manner. The helpful information provided seemed to be the most popular response.

Although comments about what was least helpful about genetic counseling were few, they included, the delay in obtaining an appointment, the distance traveled to the appointment, or delay in follow up.

Suggestions of how to improve genetic services included, offer more clinics to shorten the wait for an appointment or have more geneticists/counselors available. Ninety percent of respondents would recommend genetic counseling to others for the following reasons: it helps to provide a diagnosis, recurrence risk, and connection to support services; it provides peace of mind and removes fear; and finally it puts the condition and follow up in proper perspective.

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