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Survey of financial burden of families in the U.S. with children using home mechanical ventilation
Author(s) -
Edwards Jeffrey D.,
Panitch Howard B.,
Constantinescu Andrei,
Miller Rachel L.,
Stone Patricia W.
Publication year - 2018
Publication title -
pediatric pulmonology
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 0.866
H-Index - 106
eISSN - 1099-0496
pISSN - 8755-6863
DOI - 10.1002/ppul.23917
Subject(s) - medicine , child care , household income , low income , finance , family medicine , pediatrics , demographic economics , business , archaeology , history , economics
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.