The New Face of Genetics: Education of the Medical Community to Improve Patient Satisfaction. A Comparison of 22q11.2 Deletion Syndrome and Turner Syndrome.

摘要

Research on patient satisfaction with genetic counseling is needed to ensure standards of care are attained in practice. This project aimed to determine if those who have genetic counseling for 22q11.2 deletion syndrome or Turner syndrome are satisfied with genetic counselors' abilities to meet their needs using the National Society of Genetic Counselors' Code of Ethics and definition of genetic counseling as standards of care. Results indicated both groups are generally pleased with their appointments; however 22Q deletion syndrome respondents were less satisfied than the Turner syndrome group. Although specific improvements exist, understanding patient needs had the biggest impact on appointment satisfaction.;Additionally, this project included the creation of educational videos on 22q11.2 deletion syndrome and Turner syndrome for The New Face of Genetics. The videos model language and attitudes that portray the beauty of each individual and will be used to teach genetic counseling and medical students characteristic features of the syndromes to assist in making a diagnosis. Using the videos as an educational tool, reduction of stigma associated with genetic conditions can begin with these audiences and create change in society.