BACKGROUND: Racial and ethnic disparities in outcomes for Black and Hispanic children with acute leukemia have been well documented, however little is known about the determinants of diagnostic delays in pediatric leukemia in the United States. The primary objective of this study is to identify factors contributing to delays preceding a pediatric leukemia diagnosis.

METHODS: This qualitative study utilized in-depth semi-structured interviews. Parents and/or patients within two years of receiving a new acute leukemia diagnosis were asked to reflect upon their family's experiences preceding the patient's diagnosis. Subjects were purposively sampled for maximum variation in race, ethnicity, income, and language. Interviews were analyzed using inductive theory-building and the constant comparative method to understand the process of diagnosis. Chart review was conducted to complement qualitative data.

RESULTS: Thirty-two interviews were conducted with a diverse population of English and Spanish speaking participants from two tertiary care pediatric cancer centers. Parents reported feeling frustrated when their intuition conflicted with providers' management decisions. Many felt laboratory testing was not performed soon enough. Additional contributors to delays included misattribution of vague symptoms to more common diagnoses, difficulties in obtaining appointments, and financial disincentives to seek urgent or emergent care. Reports of difficulty obtaining timely appointments and financial concerns were disproportionately raised among low-income Black and Hispanic participants. Comparatively, parents with prior healthcare experiences felt better able to navigate the system and advocate for additional testing at symptom onset.

CONCLUSIONS: While there are disease-related factors contributing to delays in diagnosis, it is important to recognize there are multiple non-disease-related factors that also contribute to delays. Evidence-based approaches to reduce outcome disparities in pediatric cancer likely need to start in the primary care setting where timeliness of diagnosis can be addressed.

<p><strong>OBJECTIVE: </strong>To develop and test of a measure of patient-centered care (PCC) culture in hospital-based perinatal care.</p>

<p><strong>DATA SOURCES: </strong>US perinatal hospitals; 1 provided survey development data and 14 contributed data for survey testing.</p>

<p><strong>STUDY DESIGN: </strong>We used qualitative and quantitative methods to develop the Mother-Infant Centered Care (MICC) culture survey. Qualitative methods included observation, focus group, interviews, and expert consultations to adapt items from other settings and create new items capturing dimensions of PCC articulated by The Commonwealth Fund. We quantitatively assessed survey psychometric properties using reliability (Cronbach's α and Pearson correlation coefficients) and validity (exploratory and confirmatory factor analysis [CFA]) statistics, and refined the survey. After confirming aggregation suitability (ICCs), we calculated "MICC culture scores" at the individual-, unit-, and hospital-level and assessed associations between scores and survey-collected, staff-reported outcomes to evaluate concurrent validity.</p>

<p><strong>DATA COLLECTION: </strong>Survey development included 12 site-visit observations, one semi-structured focus group (five participants), two semi-structured interviews, five cognitive interviews, and three expert consultations. Survey testing used online surveys administered to obstetric and neonatal unit staff (N=316).</p>

<p><strong>PRINCIPAL FINDINGS: </strong>Using responses from 10 hospitals with ≥4 responses from both units (n=240), the 20-item MICC culture survey demonstrated reliability (Cronbach's α=0.95) while capturing all PCC dimensions (subscale Cronbach's α=0.72-0.87). CFA showed validity through goodness-of-fit (overall chi-square=214 [p-value=0.012], SRMR=0.056, RMSEA=0.041, CFI=0.97, and TLI=0.96). Aggregation statistics (ICCs&lt;0.05) justify unit- and hospital-level aggregation. Demonstrating preliminary validity, individual-, unit-, and hospital-level MICC culture scores were associated with all outcomes (satisfaction with care provided, within-unit team effectiveness, and relational coordination [RC] between units) (p-values&lt;0.05), except for neonatal unit scores and RC (p-value=0.11).</p>

<p><strong>CONCLUSIONS: </strong>The MICC culture survey is a psychometrically sound measure of PCC culture for hospital-based perinatal care. Survey scores are associated with staff-reported outcomes. Future studies with patient outcomes will aid identification of improvement opportunities in perinatal care.</p>

<p>We explored medication use by children born preterm at 5-8&nbsp;years of age. Compared with children born at full term, children born preterm had higher medication use that included most therapeutic classifications. Although asthma and chronic lung disease influenced use, prematurity remained an independent risk factor.</p>