Household income and health-related quality of life in children receiving treatment for acute myeloid leukemia: Potential impact of selection bias in health equity research.

OBJECTIVE: Examine the influence of household income on health-related quality of life (HRQOL) among children with newly diagnosed acute myeloid leukemia (AML). DESIGN: Secondary analysis of data prospectively collected from pediatric patients receiving treatment for AML at 14 hospitals across the United States. EXPOSURE: Household income was self-reported on a demographic survey. The examined mediators included the acuity of presentation and treatment toxicity. OUTCOME: Caregiver proxy reported assessment of patient HRQOL from the Peds QL 4.0 survey. RESULT: Children with AML (n = 131) and caregivers were prospectively enrolled to complete PedsQL assessments. HRQOL scores were better for patients in the lowest versus highest income category (mean ± SD: 76.0 ± 14 household income <$25,000 vs. 59.9 ± 17 income ≥$75,000; adjusted mean difference: 11.2, 95% CI: 2.2-20.2). Seven percent of enrolled patients presented with high acuity (ICU-level care in the first 72 h), and 16% had high toxicity (any ICU-level care); there were no identifiable differences by income, refuting mediating roles in the association between income and HRQOL. Enrolled patients were less likely to be Black/African American (9.9% vs. 22.2%), more likely to be privately insured (50.4% vs. 40.7%), and more likely to have been treated on a clinical trial (26.7% vs. 18.5%) compared to eligible unenrolled patients not enrolled. Evaluations of potential selection bias on the association between income and HRQOL suggested differences in HRQOL may be smaller than observed or even in the opposing direction. CONCLUSIONS: While primary analyses suggested lower household income was associated with superior HRQOL, differential participation may have biased these results. Future studies should partner with patients/families to identify strategies for equitable participation in clinical research.

Impacto económico de la falla cardíaca en el cuidador informal / Economic impact of heart failure in the informal caregiver

Resumen Introducción: La insuficiencia cardíaca (IC) es una patología estructural o funcional del corazón que deteriora la capacidad de llenado, generando síntomas que afectan la calidad de vida y la funcionalidad. Es conocido el impacto de esta enfermedad sobre los sujetos que la padecen, pero ha sido poco explorado su impacto económico sobre los cuidadores. Objetivo: Estimar el impacto económico de la IC desde la perspectiva de los cuidadores informales. Resultados: Estudio cuantitativo, tipo evaluación económica parcial. Fueron incluidos 54 sujetos diagnosticados con IC y un cuidador informal por sujeto. La edad promedio de los sujetos con IC fue 70.61 años, la mayoría hombres (64.8%), con un tiempo de diagnóstico de 84 meses y un puntaje de Barthel de 81.94, que representa una dependencia leve. Respecto a los cuidadores, el 48.1% reportaban un vínculo laboral activo; el ingreso mediano fue de $1260.000 COP/mes. El número de horas de cuidado fue de 4.93 h/día. El impacto económico se reflejó en los ingresos mensuales, causando una pérdida de $644,017.50 por actividades de cuidado y en el tiempo laboral una reducción del 30%. El 29% de los ingresos fueron destinados a labores del cuidado; por lo tanto, generaron gastos que redujeron el 71% de los ingresos. De acuerdo con lo anterior, por cada 10 horas de trabajo se destinan 7 horas al cuidado. Conclusiones: La IC impacta de manera negativa la economía de los cuidadores informales de sujetos con esta patología.

Abstract Introduction: Heart failure (HF) is a structural or functional pathology of the heart that impairs filling capacity of this organ, generating symptoms that affect quality of life and functionality in subjects who suffer this disease. This impact on economic life in caregivers of patients with HF has been poorly studied, therefore, there is a lack of information about this topic. Objective: To estimate the economic impact of HF from the perspective of informal caregivers. Type of study: quantitative study, partial economic evaluation type. Population and sample: 54 subjects diagnosed with HF and one informal caregiver per subject were included. Results: The average age of the subjects with HF is 70.61 years, most of them men (64.8%), with a diagnosis time of 84 months and a Barthel score of 81.94 points, which represents a mild dependency. Regarding caregivers, 48.1% reported an active employment relationship, the median income was $1,260,000 COP/month. The number of hours of care is 4.93 hours/day. The economic impact was reflected in monthly income, causing a loss of $644,017.50 due to care activities and a 30% reduction in working time. 29% of income was allocated to care work, therefore, they generated expenses that reduced 71% of income. According to the above, for every 10 hours of work, 7 hours are spent on care. Conclusions: HF negatively impacts the economy of the informal caregiver of subjects with this pathology.

Financial impact of post-transplant complications among children undergoing allogeneic hematopoietic cell transplantation.

Complications following allogeneic hematopoietic cell transplantation (alloHCT) continue to be a significant challenge that often result in significant morbidity/mortality and increased healthcare utilization and cost. In this study, we analyzed the impact of post-alloHCT complications on healthcare utilization and cost during first year post-transplant. We analyzed data on 240 pediatric patients. Complications analyzed included kidney injury, liver injury, lung injury, viral infections, bacterial infections, fungal infections, and acute graft-versus-host disease (GVHD). Patients were divided into three groups based on the number of complications (0-1, 2-3, and >3). Cost was estimated from charges recorded in the Pediatric Health Information System database and hospital accounting records. Patients with >3 complications had higher healthcare utilization and cost, primarily driven by inpatient hospitalization and intensive care unit admissions. Multivariable analysis of risk factors identified bacteremia ($90,166, SE = 26,636, p < 0.001), lung injury ($108,529, SE = 28,196, p < 0.001), liver injury ($90,805, SE = 28,660, p = 0.002), and grade II-IV aGVHD ($137,866, SE = 28,472, p < 0.001) as associated with significantly increased cost. Our study highlights the significant impact complications have on the overall cost of alloHCT. The identification that complications associated with high morbidity (aGVHD, pulmonary disease) are also associated with the highest financial burden emphasizes the need for future research in these areas to expand management options and improve outcomes for our patients.

Whole-Genome and Whole-Exome Sequencing in Pediatric Oncology: An Assessment of Parent and Young Adult Patient Knowledge, Attitudes, and Expectations.

PURPOSE: The complexity of results generated from whole-genome sequencing (WGS) and whole-exome sequencing (WES) adds challenges to obtaining informed consent in pediatric oncology. Little is known about knowledge of WGS and WES in this population, and no validated tools exist in pediatric oncology. METHODS: We developed and psychometrically evaluated a novel WGS and WES knowledge questionnaire, the Precision in Pediatric Sequencing Knowledge Questionnaire (PIPseqKQ), to identify levels of understanding among parents and young adult cancer survivors (≥ 18 years old), off therapy for at least 1 year from a single-institution pediatric oncology outpatient clinic. Participants also completed health literacy and numeracy questionnaires. All participants provided written informed consent. RESULTS: One hundred eleven participants were enrolled: 76 were parents, and 35 were young adults. Of the total cohort, 77 (69%) were female, 63 (57%) self-identified as white, and 74 (67%) self-identified as non-Hispanic. Sixty-six (59%) had less than a college degree. Adequate health literacy (n = 87; 80%) and numeracy (n = 89; 80%) were demonstrated. Internal consistency was high (Cronbach's α = .88), and test-retest reliability was greater than the 0.7 minimum requirement. Scores were highest for genetic concepts related to health and cancer and lowest for WGS and WES concepts. Health literacy and educational attainment were significantly associated with PIPseqKQ scores. Overall, participants felt the benefits of WGS and WES outweighed the potential risks. CONCLUSION: Parents and young adult cancer survivors have some genetics knowledge, but they lack knowledge about WGS and WES. The PIPseqKQ is a reliable tool that can identify deficits in knowledge, identify perceptions of risks and benefits of WGS and WES, and help clinicians tailor their consent discussions to best fit families. The PIPseqKQ also may inform the development of educational tools to better facilitate the informed consent process in pediatric oncology.