Pediatrics |

Caring for Children With Chronic Respiratory Failure at Home: Results of a 32-Year Experience FREE TO VIEW

John Downes, MD; Joan Dougherty, BSN; Deborah Boroughs, MSN
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Children's Hospital of Philadelphia, Philadelphia, PA

Chest. 2013;144(4_MeetingAbstracts):768A. doi:10.1378/chest.1704577
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SESSION TITLE: Pediatric Critical Care

SESSION TYPE: Original Investigation Slide

PRESENTED ON: Wednesday, October 30, 2013 at 07:30 AM - 09:00 AM

PURPOSE: Since 1980, the increasing incidence of children surviving acute respiratory failure but developing chronic respiratory failure (CRF) has led to growing numbers receiving mechanical ventilation at home. We determined the outcomes of 1008 children (ages 3 mos.-22 yrs.) enrolled in a statewide home care program over 32 years (1980-2012).

METHODS: We did a retrospective chart review and analysis of admission and discharge data, overall outcomes, and relationships of three major etiologic categories with outcomes, and causes of deaths.

RESULTS: The cumulative number of patients served grew from 5 in 1980 to 1008 by 2012; 441 patients (44%) survived with mechanical support past age 22 years; 338 (34%) were liberated from support before age 22 years; 182 (18%) patients died while enrolled, and 47 (5%) were lost to follow-up. Chronic lung disease (CLD) caused CRF in 454 children (45%), congenital anomalies or syndromes (CA/S) in 125 (12%), and nervous system or muscle disorders (NS/NM) in 429 (43%). The etiologic trends (1980-1999 versus 2000-2012) show increasing CLD (36% to 53%), and decreasing CA/S (16% to 9%) and NS/M disorders (48 % to 38%). In the epoch 2000-2012, immediate causes of the 98 deaths (18% mortality) were progression of disease in 69 (72 %), airway or ventilator related accidents in 19 (20 %) and unknown in 8 (8%).

CONCLUSIONS: This 32 year retrospective analysis of 1008 children with CRF cared for at home indicates that: 1) the prevalence of these patients has substantially increased; 2) most (82%) survive beyond age 22 years; and 3) many (34%) are liberated from mechanical ventilation.

CLINICAL IMPLICATIONS: Given the increasing prevalence of CRF in children, their long term survival and the benefits of being at home, we recommend that state and national health care agencies plan for these children with CRF, assuring high standards of care, advocacy and resources to achieve optimal outcomes for these children and their families.

DISCLOSURE: The following authors have nothing to disclose: John Downes, Joan Dougherty, Deborah Boroughs

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