Development of a Theory-Informed Patient Decision Aid to Facilitate Consent to Genetic Testing in the Neonatal Intensive Care Unit

Abstract

Genetic testing is an essential diagnostic tool in the neonatal intensive care unit (NICU) that can shorten infants’ stays, improve accuracy and effectiveness of medical care, and overall improve quality of life. However, there are challenges involved in the process of recommending life-saving and care-changing genetic testing in the NICU, including parental concerns around issues of paternity, guardians’ decisional anxiety, low health literacy, limited understanding of genetic testing, and receiving conflicting information from different healthcare providers. These challenges are exacerbated by the urgency guardians face in the NICU; guardians’ first exposure to genetic testing often occurs immediately before they are asked to decline or consent to it while in an extremely emotional state and fraught environment, creating a sense of urgency that affects decision-making. Current patient-provider communication practices in the NICU could benefit from improved, streamlined communication tools to help guardians make thoughtful decisions about genetic testing for their hospitalized infants. One potential strategy to streamline communication about genetic testing in the NICU is incorporating self-determination theory into patient decision aids. A series of three iterative interview rounds with NICU guardians and new guardians of infants younger than three years old were conducted. Following each round of interviews, recordings were transcribed, and feedback from participants was used to revise a patient decision aid guided by self-determination theory. After completing all three rounds of interviews and revisions, thematic analysis was conducted on all transcribed interviews to identify salient themes to NICU genetic testing decision-making. The final version of the patient decision aid developed from this study will serve as a starting point for integrating this important tool into the NICU.