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Survey of financial burden of families in the U.S. with children using home mechanical ventilation.

ABSTRACT: AIM:To describe and quantify the out-of-pocket expenses, employment loss, and other financial impact related to caring for a child using home mechanical ventilation (HMV). METHOD:We conducted a cross-sectional survey of U.S. families with children who used HMV. Eligible participants were invited to complete a questionnaire addressing household and child characteristics, out-of-pocket expenses, employment loss/reduction, and financial stress. Participants were recruited with the help of three national patient registries. RESULTS:Two hundred twenty-six participants from 32 states (152 with children who used invasive ventilation and 74 with children who used noninvasive ventilation) completed the questionnaire. Participants' median reported yearly household income was $90?000 (IQR 70?000-150?000). The median amount paid in out-of-pocket expenses in the previous 3 months to care for their child using HMV totaled $3899 (IQR $2900-4550). Reported levels of financial stress decreased as income increased; 37-60% of participants, depending on income quintile, reported moderate financial stress with "some" of that stress due to their out-of-pocket expenses. A substantial majority reported one or more household members stopped or reduced work and took unpaid weeks off of work to care for their child. CONCLUSION:The financial impact of caring for a child using HMV is considerable for some families. Providers need to understand these financial burdens and should inform families of them to help families anticipate and plan for them.

SUBMITTER: Edwards JD

PROVIDER: S-EPMC5737909 | biostudies-literature | 2018 Jan

REPOSITORIES: biostudies-literature

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Survey of financial burden of families in the U.S. with children using home mechanical ventilation.

Edwards Jeffrey D JD Panitch Howard B HB Constantinescu Andrei A Miller Rachel L RL Stone Patricia W PW

Pediatric pulmonology 20171120 1

<h4>Aim</h4>To describe and quantify the out-of-pocket expenses, employment loss, and other financial impact related to caring for a child using home mechanical ventilation (HMV).<h4>Method</h4>We conducted a cross-sectional survey of U.S. families with children who used HMV. Eligible participants were invited to complete a questionnaire addressing household and child characteristics, out-of-pocket expenses, employment loss/reduction, and financial stress. Participants were recruited with the he ...[more]

PMID: 29152895

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Project description:BackgroundHome mechanical ventilation is an established treatment for chronic respiratory failure resulting in improved survival and quality of life. Technological advancement, evolving health care reimbursement systems and newly implemented national guidelines result in increased utilization worldwide. Prevalence shows great geographical variations and data on East-Central European practice has been scarce to date. The aim of the current study was to evaluate prevalence and characteristics of home mechanical ventilation in Hungary.MethodsWe conducted a nationwide study using an online survey focusing on patients receiving ventilatory support at home. The survey focused on characterization of the site (affiliation, type), experience with home mechanical ventilation, number of patients treated, indication for home mechanical ventilation (disease type), description of home mechanical ventilation (invasive/noninvasive, ventilation hours, duration of ventilation) and description of the care provided (type of follow up visits, hospitalization need, reimbursement).ResultsOur survey uncovered a total of 384 patients amounting to a prevalence of 3.9/100,000 in Hungary. 10.4% of patients received invasive, while 89.6% received noninvasive ventilation. The most frequent diagnosis was central hypopnea syndromes (60%), while pulmonary (20%), neuromuscular (11%) and chest wall disorders (7%) were less frequent indications. Daily ventilation need was less than 8?h in 74.2%, between 8 and 16?h in 15.4% and more than 16?h in 10.4% of patients reported. When comparing sites with a limited (<?50 patients) versus substantial (>?50 patients) case number, we found the former had significantly higher ratio of neuromuscular conditions, were more likely to ventilate invasively, with more than 16?h/day ventilation need and were more likely to provide home visits and readmit patients (p <?0,001).ConclusionsOur results show a reasonable current estimate and characterization of home mechanical ventilation practice in Hungary. Although a growing practice can be assumed, current prevalence is still markedly reduced compared to international data reported, the duality of current data hinting to a possible gap in diagnosis and care for more dependent patients. This points to the importance of establishing home mechanical ventilation centers, where increased experience will enable state of the art care to more dependent patients as well, increasing overall prevalence.

Project description:Rationale: In 2016, the American Thoracic Society released clinical practice guidelines for pediatric chronic home invasive ventilation pertaining to discharge practices and subsequent management for patients with invasive ventilation using a tracheostomy. It is not known to what extent current U.S. practices adhere to these recommendations.Objectives: Hospital discharge practices and home health services are not standardized for children with invasive home mechanical ventilation (HMV). We assessed discharge practices for U.S. children with HMV.Methods: A survey of key-informant U.S. clinical providers of children with HMV, identified with purposeful and snowball sampling, was conducted. Topics included medical stability, family caregiver training, and discharge guidelines. Close-ended responses were analyzed using descriptive statistics. Responses to open-ended questions were analyzed using open coding with iterative modification for major theme agreement.Results: Eighty-eight responses were received from 157 invitations. Eligible survey responses from 59 providers, representing 44 U.S. states, included 49.2% physicians, 37.3% nurses, 10.2% respiratory therapists, and 3.4% case managers. A minority, 22 (39%) reported that their institution had a standard definition of medical stability; the dominant theme was no ventilator changes 1-2 weeks before discharge. Nearly all respondents' institutions (94%) required that caregivers demonstrate independent care; the majority (78.4%) required two trained HMV caregivers. Three-fourths described codified discharge guidelines, including the use of a discharge checklist, assurance of home care, and caregiver training. Respondents described variable difficulty with obtaining durable medical equipment, either because of insurance or durable-medical-equipment company barriers.Conclusions: This national U.S. survey of providers for HMV highlights heterogeneity in practice realities of discharging pediatric patients with HMV. Although no consensus exists, defining medical stability as no ventilator changes 1-2 weeks before discharge was common, as was having an institutional requirement for training two caregivers. Identification of factors driving heterogeneity, data to inform standards, and barriers to implementation are needed to improve outcomes.

Project description:OBJECTIVE:We tested the hypothesis that the use of mechanical ventilator support in children hospitalized with influenza during the 2009 H1N1 influenza A (H1N1) pandemic was higher than would be expected in children hospitalized for seasonal influenza after adjusting for patient risk. DESIGN:Retrospective cohort study. SETTING:Forty-three U.S. pediatric hospitals. PATIENTS:Children <18 yrs old with a discharge diagnosis of influenza admitted July 2006 through March 2009 (seasonal influenza) and June through December 2009 (2009 pandemic influenza A). INTERVENTIONS:None. MEASUREMENTS AND MAIN RESULTS:We included 10,173 children hospitalized with seasonal influenza and 9837 with presumed 2009 pandemic influenza A. The 2009 pandemic influenza A cohort was older (median 5.0 vs. 1.9 yrs), more likely to have asthma (30% vs. 18%), and less likely to receive mechanical ventilation (7.1% [n = 701] vs. 9.2% [n = 940]). Using logistic regression, we created a multivariable model of risk factors associated with endotracheal mechanical ventilator support in the seasonal influenza cohort and used this model to predict the number of expected mechanical ventilation cases in children with presumed 2009 pandemic influenza A. Adjusted for underlying health conditions, race, age, and a co-diagnosis of bacterial pneumonia, the observed/expected rate of mechanical ventilation in the presumed 2009 pandemic influenza A cohort was 0.74 (95% confidence interval 0.68-0.79). Early hospital treatment with influenza antiviral medications was associated with decreased initiation of mechanical ventilation on hospital day ? 3 in the seasonal influenza (odds ratio 0.66; 95% confidence interval 0.45-0.97) and 2009 pandemic influenza A (odds ratio 0.23; 95% confidence interval 0.16-0.34) periods; influenza antiviral use in the 2009 pandemic influenza A period was much higher (70% vs. 20%; p < .001). CONCLUSIONS:Although the number of children with a hospital discharge diagnosis of influenza almost tripled during the 2009 pandemic influenza A period, the risk-adjusted proportion of children receiving mechanical ventilation was lower than we would have predicted in a seasonal influenza cohort. Early hospital use of influenza antiviral medications was associated with a decrease in late-onset mechanical ventilation.

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Survey of financial burden of families in the U.S. with children using home mechanical ventilation.

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Survey of financial burden of families in the U.S. with children using home mechanical ventilation.

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