Assessing Non-Genetic Providers' Perceived Value of Genetic Testing in Cases of Perinatal Loss

Perinatal loss is often considered a traumatic life event. Genetic testing is available to patients upon provider initiation to investigate the etiology, which can aid in the grieving process. While genetic testing is trending towards increased utilization by non-genetic providers, it remains unclear the perceived value in the perinatal setting, specifically in cases of spontaneous miscarriage, stillbirth, and loss due to life-limiting congenital anomalies. Historically, genetic testing is perceived as having lower priority and lower utility in palliative care, with barriers to pursuing genetic testing such as provider confidence in discussing topics of genetic investigation and familiarity with the role of genetic counselors. A Qualtrics survey distributed to three interprofessional networks invited non-genetic providers who cared for pregnant or post-birth patients within the last five years to share their individual perspectives. Fifty-nine individuals represented registered nurses (22), MDs (MFM (6), OBGYN (3), neonatology (1), pediatrician (1)), social worker (10), perinatal loss coordinator or specialist (5), licensed counselor or therapist (3), certified midwives (2), peer counselor or advocate (2), art therapist (1), doula (1), nurse practitioner (1), and psychologist (1). Analysis demonstrates that non-genetic providers tend to perceive genetic testing as extremely important in cases of life limiting congenital anomalies (57.6%, n=34/59), followed by stillbirth (39.0%, n=23/59), and spontaneous miscarriage (10.1%, n=6/59). This pattern is repeated when non-genetic providers report the frequency in which they discuss genetic testing with patients, with the most non-genetic providers reporting to “always” discuss genetic testing in cases of life limiting congenital anomalies (42.4%, n=25/59), followed by stillbirth (36.2%, n=21/58), and spontaneous miscarriage (19%, n=11/59). Forty-four percent (n=26/59) of non-genetic providers reported to “often” or “always” suggest a patient experiencing perinatal loss meet with a genetics provider. Respondents perceive genetic testing as very important or extremely important, practice discussing genetic testing with patients, and practice suggesting a patient meet with a genetics provider in cases of perinatal loss. Results also demonstrate that non-genetic providers are aware of the roles of genetic providers and availability for consultation regarding the genetic testing process and genetic testing results. This suggests that interprofessional collaboration is occurring in the event of perinatal loss, potentially enhancing patient care and improving health equity, as outlined in the Quintuple Aim. Further investigation is needed to explore structures and processes in healthcare systems that may promote interprofessional collaboration related to perinatal loss.