Improving communication between doctors and parents after newborn screening

Abstract

Background: Newborn screening (NBS) enables early treatment, and some consider it a natural vehicle for genetic screening. Bioethicists argue for caution since families of infants with carrier status can develop psychosocial complications. This paper describes the methods and feasibility of Wisconsin's statewide project for quality improvement of communication and psychosocial outcomes after NBS.

Methods: When NBS identifies carrier status for cystic fibrosis or sickle cell, we contact primary care providers (PCPs), answer questions, and invite them to rehearse informing the parents. Three months later, we telephone the parents, assess knowledge and psychosocial outcomes, provide counseling, and assist with self-referral to further resources. Afterward, evaluation surveys are provided to the parents, to be returned anonymously.

Results: Birthing facilities provided accurate PCP names for 73% of 817 infants meeting inclusion criteria; we identified PCPs for 21% more. We reached 47.3% of PCPs in time to invite a rehearsal; 60% of these accepted. We successfully called 50.2% of eligible parents; 61% recalled a PCP explanation, and 48.5% evaluated the explanation favorably. Evaluations by parents with limited health literacy were less favorable.

Conclusion: It is feasible to follow parents for psychosocial outcomes after NBS. Preliminary data about communication is mixed, but further data will describe psychosocial outcomes and investigate outcomes' associations with communication.

Figure 1

Usual practice (left) and Project methods (right) after newborn screening identifies carrier status for sickle cell hemoglobinopathy or likely carrier status for cystic fibrosis Abbreviations = NBS, newborn screening; SCH, sickle cell hemoglobinopathy; CF, cystic fibrosis; PCP, the infant’s primary care provider. * Not shown: for infants with the likely CF carrier result, the PCP orders a sweat chloride test to verify that CF is not present.

Figure 2

Accuracy of PCP information provided by the birthing facility for SCH (sickle cell hemoglobinopathy) and CF (cystic fibrosis) carrier infants.