title: Application of a Consumer Health Information Needs Taxonomy to Questions in Maternal-Fetal Care.
abstract: Pregnancy is a time when expectant mothers may have numerous questions about their unborn children, especially when congenital anomalies are diagnosed prenatally. We sought to characterize information needs of pregnant women seen in the Vanderbilt Children's Hospital Fetal Center. Participants recorded questions from diagnosis through delivery. Questions were categorized by two researchers using a hierarchical taxonomy describing consumer health information needs. Consensus category assignments were made, and inter-rater reliability was measured with Cohen's Kappa. Sixteen participants reported 398 questions in 39 subcategories, of which the most common topics were prognosis (53 questions; 13.3%) and indications for intervention (31 questions; 7.8%). Inter-rater reliability of assignments showed moderate (κ=0.57) to substantial (κ=0.75) agreement for subcategories and primary categories, respectively. Pregnant women with prenatal diagnoses have diverse unmet information needs; a taxonomy of consumer health information needs may improve the ability to meet such needs through content and system design.
authors.affiliation: Vanderbilt University Medical Center, Nashville, Tennessee.
authors.forename: Jared A
authors.initials: JA
authors.lastname: Shenson
authors.affiliation: Vanderbilt University Medical Center, Nashville, Tennessee.
authors.forename: Ebone
authors.initials: E
authors.lastname: Ingram
authors.affiliation: Vanderbilt University Medical Center, Nashville, Tennessee.
authors.forename: Nadja
authors.initials: N
authors.lastname: Colon
authors.affiliation: Vanderbilt University Medical Center, Nashville, Tennessee.
authors.forename: Gretchen Purcell
authors.initials: GP
authors.lastname: Jackson
mesh_terms: D000013:Congenital Abnormalities; D054626:Consumer Health Information; D005260:Female; D006301:Health Services Needs and Demand; D006801:Humans; D008427:Maternal Health Services; D011247:Pregnancy; D015203:Reproducibility of Results; D009626:Terminology as Topic