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

Int J Pediatr Otorhinolaryngol. 2017 Aug;99:107-110. doi: 10.1016/j.ijporl.2017.05.025. Epub 2017 Jun 6.


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.

Keywords: Family centered care; Pediatrics; Quality of care; Tracheostomy.

MeSH terms

  • Adaptation, Psychological
  • Caregivers / education*
  • Caregivers / psychology
  • Child
  • Child, Preschool
  • Family Nursing / methods*
  • Female
  • Health Status
  • Humans
  • Male
  • Qualitative Research
  • Quality of Health Care
  • Quality of Life*
  • Surveys and Questionnaires
  • Tracheostomy / adverse effects
  • Tracheostomy / education
  • Tracheostomy / methods*