Evaluation of genetic counseling services offered in a Huntington disease clinic

Studies of outcomes associated with the provision of genetic counseling services began to emerge in the 1990’s. The goals of this outcome-based research are often focused on examining the effectiveness of the services offered and determining appropriate means for improvement of services. The outcomes measured vary depending on the specific goals of the study and beliefs concerning the nature of counseling. Research utilizing outcome measurements choose the most appropriate measurement based on the desired goal of the research. This study employed a client satisfaction measurement, specifically a Satisfaction with Genetic Counseling Scale (SGCS), a self-reporting measure provided to clients in the form of a survey who were seen at the Huntington Disease Specialty Clinic in Pittsburgh, Pennsylvania. The hypothesis for this study was that patients in the HD Clinic are generally satisfied with the genetic counseling services they have received. Descriptive statistics were used to measure the general satisfaction and test the hypothesis. Responses to open-ended questions were categorized into themes to gather more insight into patient perceptions of genetic counseling services. Thirty-three individuals completed the survey, and analysis of the results revealed that patients are generally satisfied with the genetic counseling. Results were broken down into subscales measuring general satisfaction of inherent characteristics of a genetic counselor and attributes specific to the counseling. Patients were overall generally satisfied with each subscale. This research is of particular significance to the field of public health because assessing the provision of genetic counseling services ensures that clients’ needs are being met as well identifies potential avenues for improvement of services. Research of this nature is becoming increasingly more important because genetic counselors, with their expertise in molecular diagnosis, are expected to play an essential role in providing personalized and preventative health care in the growing field of genome-guided medicine. This research may inform outcome research in other settings, providing additional insight to the genetic counseling field