A Survey of Patient Goals and Outcomes in the Adult Genetic Counseling Session
Capstone Project Committee: Nancy Callanan, MS, CGC, Catherine Fine, MS, CGC, Kristy Lee, MS, CGC
The field of genetic counseling is expanding into broader areas of health care including specialty clinics and general health care. The majority of patients that stand to benefit from this expansion are adults. The purpose of this study was to determine what expectations patients had when attending an adult genetic counseling clinic. Of particular interest, were patients’ main goals for the session, whether or not these goals were met, and if any unanticipated topics were discussed and/or outcomes reached. This information was gathered via a qualitative telephone survey completed shortly after the participant’s genetic counseling session. A total of ten interviews were completed. Four main categories of patient goals were identified: (1) concern for the possible impact of a particular genetic condition on other family members, (2) making a new diagnosis, (3) clarifying a previously made diagnosis, and (4) receiving updated information about a diagnosis and its medical implications. A major finding of the study was that many patients were not well informed of the reason they were being referred to a genetics clinic or how best to prepare for the appointment. A genetic counseling information sheet has been developed. This educational tool should allow patients to be more prepared for their genetic counseling session and thus potentially increase the benefit to the patient. Despite this finding, the majority of participants stated that their goals for the appointment were met and all participants reported that they were satisfied with their genetic counseling session. One limitation of this study was the small sample size. It is recommended that future studies focus on the psychosocial needs of the adult genetic counseling population.
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