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

Hartnick, Christopher J.; Diercks, Gillian R.; Guzman, Vanessa de; Hartnick, Elizabeth; Cleave, Jeanne Van; Callans, Kevin

doi:10.1016/j.ijporl.2017.05.025

Cited by 44 publications

(54 citation statements)

References 11 publications

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“…6,9,23,24 CWT have high hospital readmission rates particularly following discharge after initial tracheostomy placement with rates varying from 20% to 50% in the first 3 months. 8,25-27 High readmission rates contribute to already elevated levels of caregiver burden and increased health care costs, 19,24,28,29 and are costly and stressful for patients/families. 6 A well-trained caregiver is the most effective prevention for home emergencies for CWT on mechanical ventilation.…”

Section: Introductionmentioning

confidence: 99%

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Identifying Caregiver Needs for Children With a Tracheostomy Living at Home

Mai

Davis

Hamilton

et al. 2020

Clin Pediatr (Phila)

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This study sought to understand caregiver needs of children with tracheostomies (CWT) living at home and inform development of standardized tracheostomy simulation training curricula. Long-term goals are decreasing hospital readmissions following tracheostomy placement and improving family experiences while implementing a medical home model. We recruited caregivers of CWT and conducted semistructured interviews, subsequently recorded, transcribed, and analyzed for emerging themes using NVivo. Demographic data were collected via quantitative surveys. Twenty-seven caregivers participated. Emerging themes included the following: (1) caregivers felt overwhelmed, sad, frightened when learning need for tracheostomy; (2) training described as adequate, but individualized training desired; (3) families felt prepared to go home, but transition was difficult; (4) home nursing care fraught with difficulty and yet essential for families of CWT. Families of CWT have specific needs related to discharge training, resources, support, and home nursing. Provider understanding of caregiver needs is essential for child well-being, patient-/family-centered care, and may improve health outcomes.

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Section: Introductionmentioning

confidence: 99%

“…30 Improving caregiver training may lead to fewer readmissions, reduced morbidity and mortality, reduced caregiver burden, and decreased medical costs. 23,24…”

Section: Introductionmentioning

confidence: 99%

Identifying Caregiver Needs for Children With a Tracheostomy Living at Home

Mai

Davis

Hamilton

et al. 2020

Clin Pediatr (Phila)

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“…For example, although midline posterior glossectomy with or without lingual tonsillectomy has been suggested to significantly reduce AHI in children with DS who have persistent OSA following adenotonsillectomy, these procedures can lead to postoperative bleeding as well as increased postoperative hospital stay due to poor oral intake . In the case of tracheostomy, significant caregiver burden and reduced mental health are also encountered …”

Section: Introductionmentioning

confidence: 99%

“…11 In the case of tracheostomy, significant caregiver burden and reduced mental health are also encountered. 12 Hypoglossal nerve stimulation has emerged as a novel therapy for OSA in adults. It has been proven safe and effective for upper airway stimulation for the treatment of moderate-to-severe OSA in select adults.…”

Section: Introductionmentioning

confidence: 99%

Update on hypoglossal nerve stimulation in children with down syndrome and obstructive sleep apnea

et al. 2019

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Objectives/Hypothesis Hypoglossal nerve (HGN) stimulation is a novel therapy for obstructive sleep apnea (OSA) in adults. Its efficacy and safety in children with Down syndrome (DS) was previously reported in a preliminary case series of six adolescents. Study Design Case series. Methods Twenty nonobese children and adolescents (aged 10–21 years) with DS and severe OSA (apnea‐hypopnea index [AHI] >10 and <50 events/hr) despite prior adenotonsillectomy were enrolled. Participants had failed a trial of continuous positive airway pressure therapy and underwent sleep endoscopy confirming surgical candidacy. The primary outcome was to assess safety and monitor for adverse events. Secondary outcomes included efficacy in reducing AHI (% reduction in AHI), adherence to therapy, and change in a validated quality‐of‐life instrument, the OSA‐18 survey. Results All 20 children (median age = 16.0 years [interquartile range = 13–17 years], 13 male) were implanted with no long‐term complications. We report two interval adverse events, both of which were corrected with revision surgery. Twenty participants completed the 2‐month polysomnogram, with median percent reduction in titration AHI of 85% (interquartile range = 75%–92%). The median nightly usage for these children was 9.21 hours/night. There was a median change in the OSA‐18 score of 1.15, indicating a moderate, yet significant, clinical change. Conclusions HGN stimulation was safe and effective in the study population. Two minor surgical complications were corrected surgically. Overall, these data suggest that pediatric HGN stimulation appears to be a safe and effective therapy for children with DS and refractory severe OSA. Level of Evidence 4 Laryngoscope, 130:E263–E267, 2020

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“…2 The article remains one of few studies to describe national rates, epidemiologic characteristics, and outcomes of pediatric tracheostomies, as subsequent studies largely remained limited to single tertiary referral centers or statewide databases. 3-7…”

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confidence: 99%

Incidence, Epidemiology, and Outcomes of Pediatric Tracheostomy in the United States from 2000 to 2012

Müller

Mamidala

Smith

et al. 2018

Otolaryngol.--head neck surg.

108

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Objectives To investigate national and regional variations in pediatric tracheostomy rates, epidemiology, and outcomes from 2000 to 2012. Study Design Retrospective cohort analysis. Setting Previous research with the 1997 edition of the Kids’ Inpatient Database (KID), a national database of pediatric hospital discharge data, demonstrated that rates and outcomes of pediatric tracheostomy vary among US geographic regions. The KID has since been released an additional 5 times, increasing in size with successive editions. Subjects and Methods Patients ≤18 years old with procedure codes for permanent or temporary tracheostomy from 2000 to 2012 were included. Primary outcome was a weighted population-based rate of tracheostomy stratified by year. Secondary analysis included epidemiologic characteristics and outcomes stratified by year and geographic region. Results A weighted total of 24,354 cases was analyzed. Population-based tracheostomy rates decreased from 6.8 ± 0.2 (mean ± SD) tracheostomies per 100,000 child-years in 2000 to 6.0 ± 0.2 in 2012. Minorities increased from 53.3% in 2000 to 56.4% in 2012. Patients experienced increased procedures, diagnoses, length of stay, and hospital charges with time. From 2000 to 2012, rates and outcomes varied by US geographic region. Mortality during hospitalization (8%) did not vary by year, patient age, region, or sex. Conclusions Pediatric tracheostomy is associated with variation in incidence, epidemiology, and hospitalization outcomes in the United States from 2000 to 2012. While rates of pediatric tracheostomy decreased, patients became increasingly medically complicated and ethnically diverse with outcomes varying according to geographic region.

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

Cited by 44 publications

References 11 publications

Identifying Caregiver Needs for Children With a Tracheostomy Living at Home

Identifying Caregiver Needs for Children With a Tracheostomy Living at Home

Update on hypoglossal nerve stimulation in children with down syndrome and obstructive sleep apnea

Incidence, Epidemiology, and Outcomes of Pediatric Tracheostomy in the United States from 2000 to 2012

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