Project Description
No question too Small: Development of a Question Prompt List for Infants and their Families
Despite major advances in neonatal care, many infants in the
neonatal intensive care unit (NICU) die or survive with profound
neurodevelopmental disability. Data from parents show that good communication
with clinicians is critical as they consider how to make decisions for their
infants. Our overall goal is to improve communication between parents and
clinicians by adapting a tool that has been successful in other disciplines – a
Question Prompt List (QPL) – for use in the NICU. The QPL is an emerging communication
strategy that guides patients’ interactions with their healthcare team by
providing patients with suggested questions to ask their clinicians, which can
be reviewed by clinicians prior to high-stakes clinical encounters. QPLs
promote self-efficacy by validating patient concerns and providing prompts for
initiating and participating in difficult conversations. We will develop and
study a QPL tailored to the needs of families of infants at risk of brain
injury.
In specific aim 1, we will use qualitative analysis to
derive question content from two sources of existing data: 1) audio-recorded
NICU family meetings and 2) interviews with parents of infants with brain
injury. In specific aim 2, we will refine QPL content using parent focus
groups, clinician focus groups, and formative cognitive testing. In specific aim 3, we will pilot the QPL.
Families will be given the QPL in advance of a planned family conference. They
will be asked to identify high priority questions which will be shared with
their clinician in advance of the conference. Conferences will be
audio-recorded for analysis. The primary outcome of the pilot will be
feasibility; however, we will use this opportunity to examine exploratory
measures for future study planning. The results will directly inform the
implementation and study of the QPL for NICU families in a multicenter trial.
Bio
Monica Lemmon, MD is an Assistant Professor of Pediatrics at
Duke University Hospital within the division of child neurology. Dr. Lemmon
works as a fetal and neonatal neurologist and cares for infants with neurologic
disease. She is a past recipient of the American Academy of Neurology’s medical
education research training fellowship, and has worked to measure and improve
medical student training in communication skills. Her current research focuses
on understanding and improving how parents and clinicians work together to make
decisions for critically ill infants.
Email: monica.lemmon@duke.edu