A quality study of family-centered care coordination to improve care for children undergoing tracheostomy and the quality of life for their caregivers.

IMPORTANCE:Approximately 4000 U.S. children undergo tracheostomy yearly [1], and these surgeries often result in hospital re-admissions that have definite cost and caregiver burdens due to complications that are avoidable with proper training and support. OBJECTIVE:To assess the impact of a Family-Centered Care Coordination (FCCC) program on the quality of care received by children undergoing tracheostomy and their caregivers. DESIGN:Caregivers of children undergoing tracheostomies from January 2012 to January 2013 and then a different set of caregivers of children undergoing tracheostomies from January 2015 to January 2016 completed both the Pediatric Tracheostomy Health Status Instrument (PTHSI) 1 month after discharge and the Medical Complications Associated with Pediatric Tracheostomy (MCAT) questionnaire 6 months after initial tracheostomy. To assess complication rates, these same sets of caregivers were asked to complete the MCAT and only those who provided complete medical data for all 6 months were included for comparative analysis. SETTING:The PTHSI and MCAT were administered at Massachusetts Eye and Ear in a hospital setting. PARTICIPANTS:Ten caregivers of children undergoing tracheostomies completed the PTHSI before FCCC program implementation and12 caregivers then completed the PTHSI after FCCC implementation. For each of the 2 groups, 5 caregivers provided complete data on the MCAT questionnaires. EXPOSURES:FCCC is a collection of programs, policies, and tools designed to ensure safe transition home for children undergoing tracheostomies, reduce re-admission rates, and minimize "caregiver burden". MAIN OUTCOMES AND MEASURES:The PTHSI is a validated caregiver quality of life instrument that was supplemented by the MCAT which records post-discharge medical issues following tracheostomy that relate specifically to the tracheotomy placement. RESULTS:The time to first follow-up appointment decreased from 6.4 weeks (SD = 1.52) to 6 days (SD = 0.18) with FCCC implementation. The total MCAT scores decreased from 15.2 (SD = 1.1) to 1.3 (SD = 1.3) (Wilcoxon sum rank test: P < 0.016) whereas neither PTHSI scores (P = 0.32) nor the specific caregiver burden domain (P = 0.18) demonstrated a significant change. CONCLUSIONS:and Relevance: By reducing the time to first follow-up after tracheostomy and by optimizing caregiver tracheostomy tube care and teaching, children's quality of care and caregiver burden can be significantly improved.