Importance: Health care in the US is often expensive for families; however, there is little transparency in the cost of medical services. The extent to which parents want cost transparency in their children's care is not well characterized.
Objective: To explore the preferences and experiences of parents of hospitalized children regarding the discussion and consideration of health care costs in the inpatient care of their children.
Design, setting, and participants: This cross-sectional multicenter survey study included 6 geographically diverse university-affiliated US children's hospitals from November 3, 2017, to November 8, 2018. Participants included a convenience sample of English- and Spanish-speaking parents of hospitalized children nearing hospital discharge. Data were analyzed from January 1, 2020, to June 25, 2021.
Main outcomes and measures: Parents' preferences and experiences regarding transparency of their child's health care costs. Multivariable linear regression examined associations between clinical and sociodemographic variables with parents' preferences for knowing, discussing, and considering costs in the clinical setting. Factors included family financial difficulties, child's level of chronic disease, insurance payer, deductible, family poverty level, race, ethnicity, parental educational level, and study site.
Results: Of 644 invited participants, 526 (82%) were enrolled (290 [55%] male), of whom 362 (69%) were White individuals, 400 (76%) were non-Hispanic/Latino individuals, and 274 (52%) had children with private insurance. Overall, 397 families (75%) wanted to discuss their child's medical costs, but only 36 (7%) reported having a cost conversation. If cost discussions were to occur, 294 families (56%) would prefer to speak to a financial counselor. Ninety-eight families (19%) worried discussing costs would hurt the quality of their child's care. Families with a medical financial burden unrelated to their hospitalized child had higher mean agreement that their child's physician should consider the family's costs in medical decision-making than families without a medical financial burden (effect size, 0.55 [95% CI, 0.18-0.92]). No variables were consistently associated with cost transparency preferences.
Conclusions and relevance: Most parents want to discuss their child's costs during an acute hospitalization. Discussions of health care costs may be an important, relatively unexplored component of family-centered care. However, these discussions rarely occur, indicating a tremendous opportunity to engage and support families in this issue.