Telegenetics: The experience of an Indian center (Centre for Human Genetics) during the COVID‐19 pandemic

Abstract

Because of the lockdowns and restrictions placed on non‐emergency medical services due to the COVID‐19 pandemic, we were prompted to set up telegenetic services for patients and families with genetic disorders. Genetic medicine poses special challenges because the unit of consultation and counseling is often the family and not just the individual. We describe here our experience over eight months in 2020 in evaluating 539 families with genetic disorders on a virtual platform. Patients from urban and rural districts of Karnataka and neighboring states received telegenetic consultation. Families were phoned by genetic counselors 14–28 days after the initial consultation to measure feedback. One member of each family was invited to complete a modified 9‐item Telehealth Satisfaction Scale (TeSS scale). Of 293 respondents, approximately 87.3% reported satisfaction with the visual and audio quality of online contact and 86.7% on saving travel time and expenses. A shorter waiting time for appointments as compared to in‐person appointments in the previous year was seen in approximately 90%. Nearly 87% reported satisfaction with online genetic consultation; however, 74% of these indicated a preference for a face‐to‐face appointment. The reasons for this included a cultural perception of confidence instilled by meeting medical specialists in person. Telegenetics presents unusual advantages in India because of the high usage of smartphones, unlimited Internet data as a feature of most Internet plans, free web‐based video applications, and digital payments. We suggest that telegenetics may be an alternative in providing a hybrid model of care in non‐emergency situations especially where resources are limited.