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Pediatric patients with home mechanical ventilation: The health services landscape
Author(s) -
Sobotka Sarah A.,
Gaur Dipika S.,
Goodman Denise M.,
Agrawal Rishi K.,
Berry Jay G.,
Graham Robert J.
Publication year - 2019
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.24196
Subject(s) - medicine , snowball sampling , population , nursing , health care , family medicine , respondent , environmental health , pathology , political science , law , economics , economic growth
Objective Children with invasive home mechanical ventilation (HMV) are a growing population with complex health service needs. Single institution studies provide insight into successful program structures and outcomes. Our study objectives were to assess health service structures, providers, and programs caring for this population throughout the U.S., and to understand barriers to high‐quality care. Design Using purposeful sampling with capture‐recapture and snowball sampling methods, we identified key informants for care of the U.S. pediatric HMV population. Informants received web‐based surveys with two reminders. Survey domains included respondent characteristics, HMV team composition, and barriers to care. Results Survey response was 71% with 101 completed. Respondents caring for patients in 45 states included physicians (61%), nurses (20%), therapists (12%), case managers (4%), and social workers (2%). Half (53%) of physicians were fellowship trained, most commonly pulmonology (22%) and critical care medicine (13%). The majority (65%) of providers described a dedicated HMV service. The majority (61%) of respondents from a HMV service provided both inpatient and outpatient care. Nearly all respondents (96%) described an inadequate supply of home nurses and 88% reported inadequate respite facilities. Conclusions Children with HMV assistance receive care from a diverse group of providers with varied team structure. Heterogeneity may reflect patient diversity and provider interest, increasing efficacy but challenging standardization nationwide. Despite team structure variability, similar home care difficulties were universally experienced. Data suggest that the home nursing shortage is a national impediment to quality and efficient discharge with limited community‐based support for this vulnerable population.