In their own words: Safety and quality perspectives from families of hospitalized children with medical complexity.

BACKGROUND: Children with medical complexity (CMC) experience adverse events due to multiorgan impairment, frequent hospitalizations, subspecialty care, and dependence on multiple medications/equipment. Their families are well-versed in care and can help identify safety/quality gaps to inform improvements. Although previous studies have shown families identify important safety/quality gaps in hospitals, studies of inpatient safety/quality experience of CMC and their families are limited. To address this gap and identify otherwise unrecognized, family-prioritized areas for improving safety/quality of CMC, we conducted a secondary qualitative analysis of safety reporting surveys among families of CMC. OBJECTIVE: Explore safety reports from families of hospitalized CMC to identify areas to improve safety/quality. DESIGNS, SETTINGS AND PARTICIPANTS: We analyzed free-text responses from predischarge safety reporting surveys administered to families of CMC at a quaternary children's hospital from April 2018 to November 2020. Using a qualitative descriptive approach, we categorized responses into standard clinical categories. Three team members inductively generated an initial codebook to apply iteratively to responses. Reviewers coded responses collaboratively, resolved discrepancies through consensus, and generated themes. MAIN OUTCOME AND MEASURES: Outcomes: family-reported areas of safety/quality improvement. MEASURES: pre-discharge family surveys. RESULTS: Two hundred and eight/two hundred and thirty-seven (88%) families completed surveys; 83 families offered 138 free-text safety responses about medications, feeds, cares, and other categories. Themes included unmet expectations of hospital care/environment, lack of consistency, provider-patient communication lapses, families' expertise about care, and the value of transparency. CONCLUSION: To improve care of CMC and their families, hospitals can manage expectations about hospital limitations, improve consistency of care/communication, acknowledge family expertise, and recognize that family-observed quality concerns can have safety implications. Soliciting family input can help hospitals improve care in meaningful, otherwise unrecognized ways.

Family Safety Reporting in Hospitalized Children With Medical Complexity.

BACKGROUND AND OBJECTIVES: Hospitalized children with medical complexity (CMC) are at high risk of medical errors. Their families are an underutilized source of hospital safety data. We evaluated safety concerns from families of hospitalized CMC and patient/parent characteristics associated with family safety concerns. METHODS: We conducted a 12-month prospective cohort study of English- and Spanish-speaking parents/staff of hospitalized CMC on 5 units caring for complex care patients at a tertiary care children's hospital. Parents completed safety and experience surveys predischarge. Staff completed surveys during meetings and shifts. Mixed-effects logistic regression with random intercepts controlling for clustering and other patient/parent factors evaluated associations between family safety concerns and patient/parent characteristics. RESULTS: A total of 155 parents and 214 staff completed surveys (>89% response rates). 43% (n = 66) had ≥1 hospital safety concerns, totaling 115 concerns (1-6 concerns each). On physician review, 69% of concerns were medical errors and 22% nonsafety-related quality issues. Most parents (68%) reported concerns to staff, particularly bedside nurses. Only 32% of parents recalled being told how to report safety concerns. Higher education (adjusted odds ratio 2.94, 95% confidence interval [1.21-7.14], P = .02) and longer length of stay (3.08 [1.29-7.38], P = .01) were associated with family safety concerns. CONCLUSIONS: Although parents of CMC were infrequently advised about how to report safety concerns, they frequently identified medical errors during hospitalization. Hospitals should provide clear mechanisms for families, particularly of CMC and those from disadvantaged backgrounds, to share safety concerns. Actively engaging patients/families in reporting will allow hospitals to develop a more comprehensive, patient-centered view of safety.

The role of pulmonary follow-up in reducing health care utilization in infants with bronchopulmonary dysplasia.

OBJECTIVE: To determine whether pulmonary follow-up affects rates of rehospitalization and visitations to emergency departments (EDs) in preterm infants with bronchopulmonary dysplasia (BPD). METHODS: In this retrospective cohort study, the authors identified all preterm infants born at ≤ 32 weeks' gestation with at least one outpatient visit to a pulmonary follow-up clinic at Children's Hospital Boston or a high-risk primary neurodevelopmental follow-up clinic for preterm infants. ED visits and rehospitalizations were identified through electronic medical records. RESULTS: Infants with pulmonary follow-up compared with infants without pulmonary follow-up were, respectively, younger (mean gestational age 26.3 ± 2.3 vs 28.3 ± 2.3 weeks, P < .0001), smaller at birth (birth weight <1200 g, 87.6% vs 57.2%, P < .0001), and needed more supplemental oxygen (55.7% vs 2.6%, P < .0001) and diuretics (65.8% vs 4.7%, P < .001) at the time of discharge from the neonatal intensive care unit. Although rates of rehospitalization were higher in infants with pulmonary follow-up, rates of visits to an ED for respiratory causes were not statistically significant. After controlling for baseline differences in both groups, the rates of rehospitalization or ED visits were the same for both groups. CONCLUSIONS: Despite differences in lung disease status in infants with and without pulmonary follow-up, the rates of health care utilization were the same in both groups. Pulmonary follow-up may decrease the expected higher rates of ED visits and hospitalizations in preterm infants with more severe lung disease.