Prenatal genetic counselors' attitudes, beliefs, and practices with discussing postnatal Duchenne muscular dystrophy treatment options

Duchenne muscular dystrophy (DMD) is an X-linked genetic condition characterized by progressive muscle degeneration. Recently, several genotype-specific treatment options for DMD have become available. Prenatal genetic counselors may encounter at-risk patients for DMD, through a variety of indications. However, little is known about how prenatal genetic counselors approach conversations about these emerging treatment options. This study aims to explore prenatal genetic counselors' attitudes, beliefs, and practices in discussing postnatal DMD treatment options with their patients. Board-certified genetic counselors providing preconception or prenatal care in the United States were eligible to participate. Individuals were recruited via convenience sampling through two professional genetic counseling organization listservs. Purposive sampling was used to select 12 individuals with diverse experiences and perspectives, who participated in one-on-one, semistructured Zoom interviews. Topics included the practices of prenatal genetic counselors related to DMD using clinical vignettes; DMD treatment knowledge; and attitudes and beliefs about DMD treatments. Data were transcribed, coded, and analyzed using reflexive thematic analysis. Three themes, one with two subthemes, were produced: (1) discussing DMD treatments in the prenatal setting is highly tailored; (2) discussing DMD treatments with prenatal patients is critical to informed decision making, with subthemes (2a) information about DMD treatments should be balanced and accurate, and (2b) multidisciplinary teams, including prenatal genetic counselors, should support patients in navigating DMD treatment discussions; and (3) prenatal genetic counselors need concise and updated resources relating to DMD treatments. These findings indicate that prenatal genetic counselors play an important role in patients' health care teams when considering DMD treatments. They also emphasize the importance of prenatal genetic counselors staying updated with advancements in treatments and communicating information to patients accurately and in a balanced manner. Given the nuanced nature of these discussions, practice guidelines may be needed.