ArticlePediatric pulmonology2018
Survey of financial burden of families in the U.S. with children using home mechanical ventilation.
Article in Pediatric pulmonology, 2018. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 14 papers, 2 of them syntheses that pooled it.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
14 citing papers in PubMed, 2 syntheses or guidelines pooled it, 36 citations in OpenAlex.
- Paediatric Long-Term Home Respiratory Support: Recommendations of the Swiss Society of Paediatric Pulmonology.Respiration; international review of thoracic diseases · 2026Guideline
- Care of Infants and Children with Tracheostomies: An Official American Thoracic Society Clinical Practice Guideline.American journal of respiratory and critical care medicine · 2025Guideline
- Work-Life Perceptions of Danish Personal Care Assistants Working in the Home Mechanical Ventilation Setting-A Survey Study.Scandinavian journal of caring sciences · 2025Article
- Non-monetary burdens of out-of-pocket costs incurred by patients and caregivers for medical care: a scoping review.BMJ open · 2025Article
- Review
- Identifying the burdens for informal caregivers of tracheostomy-dependent people: a scoping review protocol.BMJ open · 2025Article
- Interventions to Address Cancer-Related Financial Hardship: A Scoping Review and Call to Action.JCO oncology practice · 2025Article
- Adaptation of Caregivers of Individuals on Mechanical Ventilation to Caregiving Role.Indian journal of critical care medicine : peer-reviewed, official publication of Indian Society of Critical Care Medicine · 2024Article
- Paying Family Medical Caregivers for Children's Home Healthcare in Colorado: A Working Medicaid Model.The Journal of pediatrics · 2023Article
- Risk of death at home or on hospital readmission after discharge with pediatric tracheostomy.Journal of perinatology : official journal of the California Perinatal Association · 2023Article
- Home Health Care Utilization in Children With Medicaid.Pediatrics · 2022Article
- Development and validation of a novel informational booklet for pediatric long-term ventilation decision support.Pediatric pulmonology · 2021Article
- Social Factors Predictive of Intensive Care Utilization in Technology-Dependent Children, a Retrospective Multicenter Cohort Study.Frontiers in pediatrics · 2021Article
- The importance of advance care planning for children with chronic respiratory failure.Pediatric pulmonology · 2020Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
5 authors at 2 institutions in 1 country.
Funding
Abstract
aimTo 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).
methodWe 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.
resultsTwo 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.
conclusionThe 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.
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What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.