The majority of parents of children undergoing genetic testing report preference for earlier genetic counseling appointments

Abstract

AbstractIn the Indiana University Health (IUH) Medical Genetics clinic, certified genetic counselors disclose genetic test results to patients by telephone. The wait‐time between a result call‐out and a follow‐up appointment can vary from weeks to months depending on the medical geneticist's availability. Understanding the experiences that families face during these waiting periods can inform the field regarding what clinical improvements can be made to enhance patients' experiences. Our study explored three topics: the effects of wait‐times on parents or patients between a result disclosure and medical genetics follow‐up appointment, their anxiety levels during those wait‐times, and suggestions for improving parents' and patients' experiences with genetics clinics. Patients or parents who were over 18 years old, who received an initial result call‐out between May 2020 and September 2022 prior to a medical genetics follow‐up appointment, and who had a diagnostic or a variant of uncertain significance (VUS) genetic test result were recruited for study participation. Individuals were surveyed on their diagnosis, wait‐time following result disclosure, feelings during the wait‐time, and preferences for result disclosures. The results showed that length of wait‐time after a result call‐out was not associated with increased anxiety; however, a background in genetics and support group involvement were associated with increased anxiety. The majority of respondents reported that if a genetic counseling‐only appointment could occur closer to the time of results call‐out, they would prefer to have a genetic counseling‐only appointment with a second appointment for medical management with a geneticist later (58.1%). Based on these results, medical genetics clinics should consider implementing genetic counseling‐only appointments to reduce wait‐times for follow‐up appointments.