A method for identifying the financial burden of hospitalized infants on families

Objectives: To describe a method for measuring the direct and indirect costs to families of infants hospitalized with respiratory syncytial virus (RSV). Methods: After pretesting and revising a questionnaire, a prospective survey was conducted in multiple tertiary-care hospitals with pediatric intensive care units. Eligible patients were infants less than 12 months old who had not received RSV prophylaxis and were hospitalized with a confirmed RSV infection. All English- and Spanish-speaking caregivers of eligible subjects were asked to participate in a face-to-face, structured interview on the day of hospital discharge regarding hospitalization-related direct and indirect costs. Thirty days later, caregivers were re-interviewed by telephone about their RSV-related costs during the elapsed month. The survey was initiated in February 2000 and continued through April 2001. Results: In addition to the infants' parents, numerous adults visited 55% of hospitalized infants. In 17% of cases, nonparents missed work to visit the child. Volunteers watched siblings of 26% of the infants. Relying only on closed-ended questions about parents' costs during the hospitalization would have missed important information about child-care volunteers and types of expenses. Follow-up interviews revealed that RSV-related out-of-pocket expenses and missed work continued during the month following discharge. Conclusions: Survey instruments should be pretested with potentially eligible subjects. Open-ended questions are needed, because all costs cannot be anticipated. Respondents should be probed for details. This method revealed certain time and financial burdens during and after hospitalization that had not been previously reported in the literature.