Pediatric patients with home mechanical ventilation: The health services landscape

Abstract

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.

Home nursing for children with home mechanical ventilation in the United States: Key informant perspectives

“…A total of 59 total surveys were analyzed. The calculation of response rate was conducted in the same fashion as the Wave 1 survey 15 …”

“…Using a purposeful sampling method with capture‐recapture and snowball sampling, this HMV Key informant list was initially generated for the first wave of this survey series using the Complex Care Listserv and the Children's Hospital Association membership list 15 . Respondents were practitioners from diverse disciplines: physicians, nurses, respiratory therapists, and case managers.…”

Attributable Delay of Discharge for Children with Long-Term Mechanical Ventilation

“…However, core features of discharge challenges may likely be shared nationally; a survey of providers for children with long-term mechanical ventilation suggests that home nursing delays exist across the US. 29 Second, medical stability for discharge and reasons for delay of discharge were determined retrospectively from chart review. We addressed this limitation by using a conservative definition of delay of discharge (>10 days after medical stability) and utilizing consensus chart review, however, future studies may estimate these delays more accurately by using prospective strategies.…”

A transition program to adult health services for teenagers receiving long‐term home mechanical ventilation: A longitudinal qualitative study

“…Over several decades, the prevalence of children receiving home mechanical ventilation (HMV) has increased worldwide. 1,2 There are multiple reasons for this growth including improved survival in children who would have been previously palliated, advances in ventilator technology for use in the home, and a deeper understanding of the family-centered benefits of HMV. [3][4][5] Ventilator-assisted adolescents (VAAs) surviving into adulthood must transition to adult health care services.…”