Feasibility of a Change in Service Delivery: The Case of Optional Newborn Screening for Duchenne Muscular Dystrophy

Abstract

Objective: To examine the feasibility of introducing a new procedure for delivering newborn screening for Duchenne muscular dystrophy (DMD) which made the optional nature of the test explicit. Method: A consecutive cohort of parents with newborn baby boys was offered screening for DMD. When the baby was bled by the midwife (day 6/7) for routine tests, if the parents wanted the test, an extra spot of blood was put on a separate newborn screening sample card. The families were asked to post the sample card to the laboratory themselves. Results: The overall uptake of screening was 78% with the majority of parents (569/601 94.7%) notifying their decision about DMD screening to the laboratory. Conclusions: The new procedure was shown to be feasible for midwives, laboratory staff and the majority of parents. There are, however, added burdens and added benefits to both service provider and service user which need to be taken into account.