Exploring the lived experience of patients and families who speak language other than English (LOE) for healthcare: developing a qualitative study.

BACKGROUND: Patients who use Languages other than English (LOE) for healthcare communication in an English-dominant region are at increased risk for experiencing adverse events and worse health outcomes in healthcare settings, including in pediatric hospitals. Despite the knowledge that individuals who speak LOE have worse health outcomes, they are often excluded from research studies on the basis of language and there is a paucity of data on ways to address these known disparities. Our work aims to address this gap by generating knowledge to improve health outcomes for children with illness and their families with LEP. BODY: We describe an approach to developing a study with individuals marginalized due to using LOE for healthcare communication, specifically using semi-structured qualitative interviews. The premise of this study is participatory research-our overall goal with this systematic inquiry is to, in collaboration with patients and families with LOE, set an agenda for creating actionable change to address the health information disparities these patients and families experience. In this paper we describe our overarching study design principles, a collaboration framework in working with different stakeholders and note important considerations for study design and execution. CONCLUSIONS: We have a significant opportunity to improve our engagement with marginalized populations. We also need to develop approaches to including patients and families with LOE in our research given the health disparities they experience. Further, understanding lived experience is critical to advancing efforts to address these well-known health disparities. Our process to develop a qualitative study protocol can serve as an example for engaging this patient population and can serve as a starting point for other groups who wish to develop similar research in this area. Providing high-quality care that meets the needs of marginalized and vulnerable populations is important to achieving an equitable, high-quality health care system. Children and families who use a Language other than English (LOE) in English dominant regions for healthcare have worse health outcomes including a significantly increased risk of experiencing adverse events, longer lengths of stay in hospital settings, and receiving more unnecessary tests and investigations. Despite this, these individuals are often excluded from research studies and the field of participatory research has yet to meaningfully involve them. This paper aims to describe an approach to conducting research with a marginalized population of children and families due to using a LOE. We detail protocol development for a qualitative study exploring the lived experiences of patients and families who use a LOE during hospitalization. We aim to share considerations when conducting research within this population of families with LOE. We highlight learning applied from the field of patient-partner and child and family-centred research and note specific considerations for those with LOE. Developing strong partnerships and adopting a common set of research principles and collaborative framework underlies our approach and initial learnings, which we hope spark additional work in this area.

Cost-effectiveness of Intermittent vs Continuous Pulse Oximetry Monitoring in Infants Hospitalized With Stabilized Bronchiolitis.

Importance: Pulse oximetry is a noninvasive technology that is integral to the supportive care of hospitalized infants with bronchiolitis. A multicenter, randomized trial comparing the effectiveness of intermittent vs continuous pulse oximetry found similar length of hospital stay and safety outcomes, and greater nursing satisfaction, with intermittent monitoring. Objectives: To evaluate the cost-effectiveness of intermittent vs continuous pulse oximetry in hospitalized infants with stabilized bronchiolitis. Design, Setting, and Participants: An economic evaluation concurrent with a randomized trial in community and tertiary children's hospitals in Ontario, Canada, was conducted using a probabilistic analysis. Patients were enrolled from November 1, 2016, to May 31, 2019. Data included infants aged 4 weeks to 24 months hospitalized with bronchiolitis, with or without supplemental oxygen, after stabilization. The cost-effectiveness analysis adopted a societal and health care system perspective and a time horizon from hospitalization to 15 days post-discharge. Patient level direct health care costs and indirect costs were included. Health resource use, costs, and clinical outcomes were obtained from trial data. Publicly available pricing resources were used to supplement costs. Ranges for sensitivity analysis were based on 95% confidence intervals of the trial data. All costs were reported in 2021 Canadian dollars. Interventions: Intermittent (every 4 hours) vs continuous pulse oximetry using an oxygen saturation target of 90% or higher. Main Outcomes and Measures: Costs and incremental costs. Results: Trial data from 229 infants (median [IQR] age, 4.0 [2.2-8.5] months; 136 boys [59.4%], 93 girls [40.6%]) were included. Mean societal costs per patient were $6879 (95% CI, $3393 to $12 317) in the intermittent and $7428 (95% CI, $1743 to $25 011) in the continuous group with a mean incremental cost of -$548 (95% CI, -$18 486 to $8105). Mean health care system costs per patient were $4195 (95% CI, $1191 to $9461) in the intermittent and $4716 (95% CI, $335 to $22 093) in the continuous group (incremental cost, -$520; 95% CI, -$18 286 to $7358). The mean effect measure of length of stay was similar between the 2 groups: 37.4 hours (95% CI, 1.0 to 137.7 hours) in the intermittent group and 38.5 hours (95% CI, 0 to 237.1 hours) in the continuous group. One-way sensitivity analyses on all variables revealed that the findings were robust and the incremental costs were not sensitive to the uncertainty within the defined ranges. Conclusions and Relevance: In this prospective economic evaluation study, we found that costs were similar for intermittent and continuous pulse oximetry considering societal and health care perspectives. Given that clinical outcomes between monitoring strategies are comparable and that other practice considerations favor intermittent monitoring, these findings provide additional information that support the use of intermittent monitoring in hospitalized infants with stabilized bronchiolitis.

Prevalence, Cost, and Variation in Cost of Pediatric Hospitalizations in Ontario, Canada.

Importance: Identifying conditions that could be prioritized for research based on health care system burden is important for developing a research agenda for the care of hospitalized children. However, existing prioritization studies are decades old or do not include data from both pediatric and general hospitals. Objective: To assess the prevalence, cost, and variation in cost of pediatric hospitalizations at all general and pediatric hospitals in Ontario, Canada, with the aim of identifying conditions that could be prioritized for future research. Design, Setting, and Participants: This population-based cross-sectional study used health administrative data from 165 general and pediatric hospitals in Ontario, Canada. Children younger than 18 years with an inpatient hospital encounter between April 1, 2014, and March 31, 2019, were included. Main Outcomes and Measures: Condition-specific prevalence, cost of pediatric hospitalizations, and condition-specific variation in cost per inpatient encounter across hospitals. Variation in cost was evaluated using (1) intraclass correlation coefficient (ICC) and (2) number of outlier hospitals. Costs were adjusted for inflation to 2018 US dollars. Results: Overall, 627 314 inpatient hospital encounters (44.8% among children younger than 30 days and 53.0% among boys) at 165 hospitals (157 general and 8 pediatric) costing $3.3 billion were identified. A total of 408 003 hospitalizations (65.0%) and $1.4 billion (43.8%) in total costs occurred at general hospitals. Among the 50 most prevalent and 50 most costly conditions (of 68 total conditions), the top 10 highest-cost conditions accounted for 55.5% of all costs and 48.6% of all encounters. The conditions with highest prevalence and cost included low birth weight (86.2 per 1000 encounters; $676.3 million), preterm newborn (38.0 per 1000 encounters; $137.4 million), major depressive disorder (20.7 per 1000 encounters; $78.3 million), pneumonia (27.3 per 1000 encounters; $71.6 million), other perinatal conditions (68.0 per 1000 encounters; $65.8 million), bronchiolitis (25.4 per 1000 encounters; $54.6 million), and neonatal hyperbilirubinemia (47.9 per 1000 encounters; $46.7 million). The highest variation in cost per encounter among the most costly medical conditions was observed for 2 mental health conditions (other mental health disorders [ICC, 0.28] and anxiety disorders [ICC, 0.19]) and 3 newborn conditions (intrauterine hypoxia and birth asphyxia [ICC, 0.27], other perinatal conditions [ICC, 0.17], and surfactant deficiency disorder [ICC, 0.17]). Conclusions and Relevance: This population-based cross-sectional study of hospitalized children identified several newborn and mental health conditions as having the highest prevalence, cost, and variation in cost across hospitals. Findings of this study can be used to develop a research agenda for the care of hospitalized children that includes general hospitals and to ultimately build a more substantial evidence base and improve patient outcomes.

Severe illness getting noticed sooner - SIGNS-for-Kids: developing an illness recognition tool to connect home and hospital.

Background: Delays to definitive treatment for time-sensitive acute paediatric illnesses continue to be a cause of death and disability in the Canadian healthcare system. Our aim was to develop the SIGNS-for-Kids illness recognition tool to empower parents and other community caregivers to recognise the signs and symptoms of severe illness in infants and children. The goal of the tool is improved detection and reduced time to treatment of acute conditions that require emergent medical attention. Methods: A single-day consensus workshop consisting of a 17-member panel of parents and multidisciplinary healthcare experts with content expertise and/or experience managing children with severe acute illnesses was held. An a priori agreement of ≥85% was planned for the final iteration SIGNS-for-Kids tool elements by the end of the workshop. Results: One hundred percent consensus was achieved on a five-item tool distilled from 20 initial items at the beginning of the consensus workshop. The final items included four child-based items consisting of: (1) behaviour, (2) breathing, (3) skin, and (4) fluids, and one context-based item and (5) response to rescue treatments. Conclusions: Specific cues of urgent child illness were identified as part of this initial development phase. These cues were integrated into a comprehensive tool designed for parents and other lay caregivers to recognise the signs of serious acute illness and initiate medical attention in an undifferentiated population of infants and children. Future validation and optimisation of the tool are planned.