Transitions of care: An aerodigestive provider assessment survey.

OBJECTIVE: To create, validate, and apply an aerodigestive provider assessment survey. METHODS: A survey assessing provider knowledge and current practice in the transition of patients with chronic aerodigestive disorders from pediatric to adult care was drafted by a multidisciplinary expert panel. Once agreement of the initial survey items was obtained, the survey was distributed to a national multidisciplinary panel of aerodigestive experts for review. Responses from the national panel were systematically quantified and a content validity index (CVI) was calculated. A final survey was developed and distributed to pediatric and adult aerodigestive providers. RESULTS: From the initial 22 items presented to the national panel, 20 of the initial questions were included in the final instrument. Two additional questions were developed as a result of feedback from the expert panel. All items included in the survey had an Item Content Validity Index (I-CVI) of >0.85. The average Scale CVI in proportion to the average proportion of relevance (S-CVI/Ave) for the tool was 0.88. The average Scale CVI in proportion to universal agreement (S-CVI/UA) was 0.52. The survey was then administered to pediatric and adult specialty providers at our institution. Twenty-two providers completed the final survey. CONCLUSION: The content validity index measurements from this newly developed survey suggest that it is a valid tool for assessing current knowledge and practice in care transitions among patients with complex aerodigestive needs. The survey developed in this project has been used to identify knowledge gaps and process issues that can be addressed to ease the transition of adolescents from pediatric specialty care into adult specialty care.

Polysomnography Provides Useful Clinical Information in the Liberation from Respiratory Technology: A Retrospective Review.

Background The prevalence of respiratory-technology dependent children is increasing although for most children the goal is liberation from technology. Liberation from home mechanical ventilation (HMV) and decannulation strategies vary due to the lack of clinical practice standards. The primary objective of this study was to describe our practice utilizing a polysomnography (PSG) in the liberation from respiratory-technology process. Methods Retrospective study of tracheostomized children with and without HMV who underwent an evaluation for decannulation between January 2006 and June 2016. Patient demographics, indication for tracheostomy, indication for PSG, PSG results and interventions performed after the PSG were collected. RESULTS: We identified 153 decannulation attempts in 148 children. Ninety-nine children had a tracheostomy only and 49 children had a tracheostomy with HMV. There were 190 PSGs performed. Almost two-thirds of the children (N = 92) had at least one PSG, 37 children (25%) had two and 19 children (13%) had more than 2 PSGs. Children with tracheostomy and HMV had more PSGs compared to children with tracheostomy only. PSGs were performed at four points: (1) prior to tracheostomy placement (N = 23); (2) to titrate HMV (N = 19); (3) off-HMV support (N = 43); and with a capped tracheostomy (N = 101). Most of the off-HMV PSGs (N = 39) were favorable for discontinuing HMV. About two-thirds of the capped PSGs (N = 73) were favorable for decannulation; of the unfavorable capped PSGs (N = 28), thirteen required airway surgeries following the unfavorable PSG. CONCLUSION: : Overnight PSG provides useful information to the liberation process, particularly when determining readiness for discontinuing HMV and decannulation.

Liberation from home mechanical ventilation and decannulation in children.

BACKGROUND: The prevalence of children requiring outpatient invasive long-term mechanical ventilation is increasing. For some children, liberation from home mechanical ventilation (HMV) and decannulation is the desired outcome. This study describes our experience liberating tracheostomy and HMV (T-HMV) dependent children from respiratory technologies. METHODS: We reviewed charts of T-HMV dependent children who were cared for at our institution and decannulated between July 1999 and December 2011. Patient characteristics, diagnoses, and important steps leading to decannulation were recorded. RESULTS: Forty-six children achieved HMV independence and decannulation. The most common indications for T-HMV were lower airway and parenchymal lung disease. The median ages at tracheotomy, initiation of HMV, initiation of tracheostomy collar (TC) trials, HMV independence, and decannulation were 3.5, 6.0, 12.0, 25.5, and 40.5 months, respectively. Twenty-five children (54%) skipped either using a speaking valve, tracheostomy capping, or both without increased likelihood of recannulation. (P = 0.03). Common procedures prior to decannulation were airway surgery, bronchoscopy, and polysomnography (n = 30, 46, and 46 children, respectively). A median of 9.5 clinic visits and 5 hospitalizations occurred from initial hospital discharge to just prior to decannulation. HMV was primarily weaned as an outpatient. CONCLUSION: Liberation from respiratory technology is a complex, multi-step process that can be accomplished in medically complex children with varying underlying disease processes at relatively young ages. Five major steps (tracheotomy, initiation of HMV, initiation of TC trials, HMV independence, and decannulation) performed in conjunction with clinic visits, procedures, and home nursing support were integral in the successful decannulation process. Pediatr Pulmonol. 2016;51:838-849. © 2016 Wiley Periodicals, Inc.