PRESERVING MULTIDISCIPLINARY CARE MODEL AND PATIENT SAFETY DURING RE-OPENING OF AMBULATORY CF CLINIC FOR NON-URGENT CARE - A HYBRID TELEHEALTH MODEL

Rationale: The CF Foundation and the CDC recommend genetic counseling (GC) for all parents of infants with a positive CF newborn screen (NBS) However, data show that many parents do not receive GC The goals of this quality improvement (QI) project were (1) increase the rate of GC for parents of NBS+ infants diagnosed with CF or CFTR-related metabolic syndrome (CRMS), (2) utilize an educational video about CF genetics to improve family understanding of the genetic implications of a +CF NBS test, and (3) assess the feasibility of telegenetics for parents who live far from our CF Center Methods: This QI project was conducted at the CF Center at Riley Hospital for Children, Indianapolis, IN We performed a fishbone analysis of barriers to GC in our CF clinic and then developed strategies and processes to overcome each of these barriers These included assigning GC for CF to a specific individual counselor and integrating GC into the clinical processes of the CF Center We obtained permission from University of Minnesota to adapt an educational video to be shown to families of infants with a +CF NBS coming for sweat testing We administered a brief knowledge test before and after the video to assess the impact of the video Finally, we piloted telegenetics with one of our affiliate CF programs that lacked access to GC Results: In the 3 years preceding our QI project, only 9 out of 46 families with an NBS+ infant with CF or CRMS (20%) received GC Since starting our project on 9/15/18 to 5/1/20, the GC rate has increased significantly to 76% (32 out of 42 families, P\u003c0 001) Of the 10 families that did not receive GC, 2 declined because they already had GC, 4 were not followed at Riley, and 4 were delayed because of COVID-19 Prior to viewing the educational video, 50% of families scored 100% on the knowledge test, and this increased significantly to 80% of families after the video (P=0 02) We have successfully conducted 9 telegenetics visits Conclusions: Assigning a specific genetic counselor to families of infants with CF and integrating that person into the clinical processes of the CF Center resulted in increasing GC to these families An educational video shown during the time of sweat testing can increase families\u0027 knowledge of CF genetics Telegenetics is a promising option for providing GC to families who cannot make in-person visits A multipronged QI approach can improve access to GC and knowledge about CF genetics for families of CF NBS+ infants