TABLE 1

Description of Data Elements Used in the Study, Including Social Disadvantage Factors, Caregiver-Reported Barriers-To-Care Measures, and Hospital Outcomes

MeasureConstruct and DescriptionData Source
Social disadvantage factors
 US census question followed by preferred language for care60Interpreter need: 2-item, sequential approach with excellent sensitivity and specificity for identifying individuals who are likely to benefit from interpretation during medical careHospital administrative data and admission survey
 Caregiver report of highest educational attainmentLow education: defined as caregiver with a high school degree or lessAdmission survey
 Caregiver report of annual family incomeLow income: annual household income <$30 000Admission survey
 Primary payer for current hospital stayPublic insurance: Medicaid and Medicare; no insurance and charity care were also classified with public insuranceHospital administrative data
 US census questions regarding race and ethnicityMinority race and/or ethnicity: caregiver report of child’s race and/or ethnicity as anything other than non-Hispanic whiteHospital administrative data
Barriers-to-care measures
 Barriers to Care Questionnaire: System48System as a barrier: 1 item measuring the caregiver’s perception of how well the health care system has worked for their child in the past 3 mo (score range 0–100)Admission survey
 Barriers to Care Questionnaire: Skills48Skills barriers: 8 items measuring the perceived mismatch between the caregiver’s skills and what the health care system requires of them; items include the degree to which caregivers have enough information about how the system works, the degree to which they understand doctor’s orders, their ability to get referrals to specialists, and their ability to get enough help with paperwork (score range 0–100)Admission survey
 Cultural Distance Scale47Cultural distance: 4 items measuring how similar or different the caregiver feels they are compared with the child’s doctors, with questions about how they speak, how they reason about problems, communication styles, and general values in life (score range 0–100)Admission survey
 Barriers to Care Questionnaire: Marginalization48Marginalization barriers: 11 items measuring feelings of marginalization and disrespect within the health care system; items include not being listened to, impatient or intimidating doctors, not being treated with respect, and being judged on your appearance, ancestry, or accent (score range 0–100)Admission survey
 Health Care System Distrust scale61System distrust: 5 items measuring trust in the health care system; items capture the degree to which the caregiver agrees, for example, that the system lies to make money, covers up its mistakes, and discriminates on the basis of race and ethnicity (score range 5–25)Admission survey
 Barriers to Care Questionnaire: Expectations48Expectation barriers: 7 items measuring ways in which the health care system might fail to meet expectations for acceptable care; items include lack of coordination between the child’s doctors and other parts of the health care system, medical errors, and doctors treating symptoms without finding the cause of an illness (score range 0–100)Admission survey
 Barriers to Care Questionnaire: Knowledge and Beliefs48Knowledge barriers: 4 items measuring perceived discordance between the caregiver’s and providers’ beliefs and recommendations for treatment and health; items include disagreeing with doctors’ orders and doctors and nurses having different ideas about health than the caregiver does (score range 0–100)Admission survey
 Perceived Efficacy in Patient-Physician Interactions62,63Health care self-efficacy: 10-item tool measuring the caregiver’s confidence in interacting with health care professionals and organizations; items include confidence in knowing what questions to ask, getting a doctor to do something about their main health concern for their child, and understanding what the doctor said (score range 10–50)Admission survey
 Wake Forest Physician Trust Scale64Distrust of providers: 10-item tool measuring trust in the specific physician(s) providing care to the child; items include the degree to which the caregiver believes that the doctors only care about what is best for the child, that the doctors are thorough and careful, and that they will do whatever it takes to get the child needed care (score range 10–50)Follow-up survey
 Partnership-building subscale of Parents' Perceptions of Physicians' Communicative Behavior65Lack of partnership: 3 items assessing provider-caregiver partnership; items include the degree to which the doctor encouraged the caregiver to express worries and concerns and the degree to which they asked for the caregiver’s opinions on what to do for the child’s medical condition (score 3–18)Follow-up survey
Hospital outcomes
 PedsQL Generic Core or Infant Scales27,66HRQL: 23–45 items (depending on child age) assessing physical and psychosocial functioning collected at admission and follow-up. The change score is calculated as the difference between the follow-up and admission survey scores (each scaled 0–100). For analyses, caregiver report was used for patients <13 y old. For teenagers, self-report was used when available; otherwise, caregiver report was used.Admission and follow-up surveys
 Hospital LOSMeasured as a continuous variable to the one-tenth of a dayHospital administrative data
 Unplanned 30-d readmissions3230-d unplanned readmissions: readmissions to inpatient or observation status within 30 d of discharge after excluding readmissions with procedure codes that are likely to be related to a planned procedureHospital administrative data