Young adults' narratives about living with home mechanical ventilation - a phenomenological hermeneutical study.

PURPOSE: An increasing number of children and young adults with complex medical conditions and respiratory failure are treated with home mechanical ventilation (HMV). The current study aimed to describe how young adults using HMV experience their everyday life with the ventilator, their physical impairments and their opportunities for an educational and professional career. MATERIALS AND METHODS: Data were collected via narrative interviews with nine young HMV users (3 females and 6 males, aged 18-31 years) in their homes. Two were ventilated invasively, six were ventilated non-invasively and one was treated with continuous positive airway pressure (CPAP) via facemask. Data were analysed using a phenomenological hermeneutical method. RESULT: A multi-professional team contributed to participants' safety and ability to participate in society through higher education and professional work. A good and valuable life, mostly feeling healthy were experienced but also prejudice and stiffened social society structures. CONCLUSION: The findings of this study prove the importance of having long-standing access to a competent and supportive available multi-professional healthcare team when living with a long-term complex condition. These teams provided well-functioning human and technological support in everyday lives.

An increasing number of children and young adults are treated with home mechanical ventilation due to respiratory failure.The home mechanical ventilation treatment provided rest from breathing and improved sleep quality in such a way that work and higher studies could be managed.Longstanding access to a supportive multi-professional healthcare team provided feelings of being safe, which in turn boosted self-confidence in life and preparedness to meet new challenges.

Codesign of remote data collection for chronic management of pediatric home mechanical ventilation.

INTRODUCTION: Outpatient monitoring of children using invasive home mechanical ventilation (IHMV) is recommended, but access to care can be difficult. This study tested if remote (home-based) data collection was feasible and acceptable in chronic IHMV management. METHODS: A codesign study was conducted with an IHMV program, home nurses, and English- and Spanish-speaking parent-guardians of children using IHMV (0-17 years; n = 19). After prototyping, parents used a remote patient monitoring (RPM) bundle to collect patient heart rate, respiratory rate (RR), oxygen saturation, end-tidal carbon dioxide (EtCO2 ), and ventilator pressure/volume over 8 weeks. User feedback was analyzed using qualitative methods and the System Usability Scale (SUS). Expected marginal mean differences within patient measures when awake, asleep, or after a break were calculated using mixed effects models. RESULTS: Patients were a median 2.9 years old and 11 (58%) took breaks off the ventilator. RPM data were entered on a mean of 83.7% (SD ± 29.1%) weeks. SUS scores were 84.8 (SD ± 10.5) for nurses and 91.8 (SD ± 10.1) for parents. Over 90% of parents agreed/strongly agreed that RPM data collection was feasible and relevant to their child's care. Within-patient comparisons revealed that EtCO2 (break-vs-asleep 2.55 mmHg, d = 0.79 [0.42-1.15], p < .001; awake-vs-break 1.48, d = -0.49 [0.13-0.84], p = .02) and RR (break-vs-asleep 16.14, d = 2.12 [1.71-2.53], p < .001; awake-vs-break 3.44, d = 0.45 [0.10-0.04], p = .03) were significantly higher during ventilator breaks. CONCLUSIONS: RPM data collection in children with IHMV was feasible, acceptable, and captured clinically meaningful vital sign changes during ventilator breaks, supporting the clinical utility of RPM in IHMV management.

Effects of the First Spontaneous Breathing Trial in Children With Tracheostomy and Long-Term Mechanical Ventilation.

BACKGROUND: Weaning and liberation from mechanical ventilation in pediatric patients with tracheostomy and long-term mechanical ventilation constitute a challenging process due to diagnosis heterogeneity and significant variability in the clinical condition. We aimed to evaluate the physiological response during the first attempt of a spontaneous breathing trial (SBT) and to compare variables in subjects who failed or passed the SBT. METHODS: This was a prospective observational study in tracheostomized children with long-term mechanical ventilation admitted to the Hospital Josefina Martinez, Santiago, Chile, between 2014-2020. Cardiorespiratory variables such as breathing pattern, use of accessory respiratory muscles, heart rate, breathing frequency, and oxygen saturation were registered at baseline and throughout a 2-h SBT with or without positive pressure depending on an SBT protocol. Comparison of demographic and ventilatory variables between groups (SBT failure and success) was performed. RESULTS: A total of 48 subjects were analyzed (median [IQR] age of 20.5 [17.0-35.0] months, 60% male). Chronic lung disease was the primary diagnosis in 60% of subjects. Eleven (23%) total subjects failed the SBT (< 2 h), with an average failure time of 69 ± 29 min. Subjects who failed the SBT had a significantly higher breathing frequency, heart rate, and end-tidal CO2 than subjects who succeeded (P < .001). In addition, subjects who failed the SBT had significantly shorter duration of mechanical ventilation before the SBT, higher proportion unassisted SBT, and higher rate of deviation SBT protocol in comparison with subjects who succeeded. CONCLUSIONS: Conducting an SBT to evaluate the tolerance and cardiorespiratory response in tracheostomized children with long-term mechanical ventilation is feasible. Time on mechanical ventilation before the first attempt and type of SBT (with or without positive pressure) could be associated with SBT failure.

Long-term mechanical ventilation and transitions in care: A narrative review.

OBJECTIVES: Individuals dependent on long-term mechanical ventilation (LTMV) for their day-to-day living are a heterogenous population who go through several transitions over their lifetime. This paper describes three transitions: 1) institution/hospital to community/home, 2) pediatric to adult care, and 3) active treatment to end-of-life for ventilator-assisted individuals (VAIs). METHODS: A narrative review based on literature and the author's collective practical and research experience. Four online databases were searched for relevant articles. A manual search for additional articles was completed and the results are summarized. RESULTS: Transitions from hospital to home, pediatric to adult care, and to end-of-life for VAIs are complex and challenging processes. Although there are several LTMV clinical practice guidelines highlighting key components for successful transition, there still exists gaps and inconsistencies in care. Most of the literature and experiences reported to date have been in developed countries or geographic areas with funded healthcare systems. CONCLUSIONS: For successful transitions, the VAIs and their support network must be front-and-center. There should be a coordinated, systematic, and holistic plan (including a multi-disciplinary team), life-time follow-up, with bespoke consideration of jurisdiction and individual circumstances.

Factors associated with long-term mechanical ventilation in patients undergoing cardiovascular surgery.

BACKGROUND: One of the main therapy for coronary artery disease is surgery. Prolonged mechanical ventilation in patients with cardiac surgery is associated with high mortality. This study aimed to determine the factors related to long-term mechanical ventilation (LTMV) in patients undergoing cardiovascular surgery. METHODS: The present study was a descriptive-analytical study in which the records of 1361 patients who underwent cardiovascular surgery and were on a mechanical ventilator during 2019-2020 at the Imam Ali Heart Center in Kermanshah city were examined. The data collection tool was a three-part researcher-made questionnaire including demographic characteristics, health records, and clinical variables. Data analysis was done using descriptive and inferential statistical tests and SPSS Version 25 software. RESULTS: In this study, of the 1361 patients, 953 (70%) were male. The results indicated that 78.6% of patients had short-term mechanical ventilation, and 21.4% had long-term mechanical ventilation. There was a statistically significant relationship between the history of smoking, drug use, and baking bread with the type of mechanical ventilation (P < 0.05). Also, based on the regression test, some parameters, such as the history of respiratory conditions, could predict the prolongation of mechanical ventilation. Creatinine levels before surgery, chest secretions after surgery, central venous pressure after surgery, and the status of cardiac enzymes before surgery also affect this issue. CONCLUSION: This study investigated some factors related to prolonged mechanical ventilation in patients undergoing heart surgery. For optimizing the care and therapeutic measures, It is suggested, healthcare workers have a detailed assessment on patients with factors such as the history of baking bread, history of obstructive pulmonary disease, history of kidney disease, use of an intra-aortic pump, number of respirations and systolic blood pressure 24 h after surgery, creatinine level 24 h after surgery, chest secretions after surgery, and the amount of pre-operative ejection fraction and cardiac enzymes (CK-MB).

Predictors for invasive home mechanical ventilation duration in bronchopulmonary dysplasia.

BACKGROUND: Children with bronchopulmonary dysplasia (BPD) who require invasive home mechanical ventilation (IHMV) are medically vulnerable and experience high caregiving and healthcare costs. Predictors for duration of IHMV in children with BPD remain unclear, which can make prognostication and decision-making challenging. METHODS: A retrospective cohort study of children with BPD requiring IHMV was conducted from independent children's hospital records (2005-2021). The primary outcome was IHMV duration, defined as time from initial discharge home on IHMV until cessation of positive pressure ventilation (day and night). Two new variables were included: discharge age corrected for tracheostomy (DACT) (chronological age at discharge minus age at tracheostomy) and level of ventilator support at discharge (minute ventilation per kg per day). Univariable Cox regression was performed with variables of interest compared to IHMV duration. Significant nonlinear factors (p < 0.05) were included in the multivariable analysis. RESULTS: One-hundred-and-nineteen patients used IHMV primarily for BPD. Patient median index hospitalization lasted 12 months (interquartile range [IQR] 8.0,14.4). Once home, half of the patients were weaned off IHMV by 36.0 months and 90% by 52.2 months. Being Hispanic/Latinx ethnicity (hazard ratio [HR] 0.14 (95% confidence interval [CI] 0.04, 0.53), p < 0.01) and having a higher DACT were associated with increased IHMV duration (HR 0.66 (CI 0.43, 0.98), p < 0.05). CONCLUSIONS: Disparity in IHMV duration exists among patients using IHMV after prematurity. Prospective multisite studies that further investigate new analytic variables, such as DACT and level of ventilator support, and address standardization of IHMV care are needed to create more equitable IHMV management strategies.

Home mechanical ventilation in children with chronic respiratory failure: a narrative review.

Advances in perinatal and pediatric intensive care and recent advances in mechanical ventilation during the last two decades have resulted in an exponential increase in the number of children undergoing home mechanical ventilation (HMV) treatment. Although its efficacy in chronic respiratory failure is well established, HMV in children is more complex than that in adults, and there are more considerations. This review outlines clinical considerations for HMV in children. The goal of HMV in children is not only to correct alveolar hypoventilation but also to maximize development as much as possible. The modes of ventilation and ventilator settings, including ventilation masks, tubing, circuits, humidification, and ventilator parameters, should be tailored to the patient's individual characteristics. To ensure effective HMV, education for the parent and caregiver is important. HMV continues to change the scope of treatment for chronic respiratory failure in children in that it decreases respiratory morbidity and prolongs life spans. Further studies on this topic with larger scale and systemic approach are required to ensure the better outcomes in this population.

Effect of Respiratory Events on Health-Related Quality of Life in Patients Treated with Long-Term Noninvasive Ventilation.

BACKGROUND: Long-term noninvasive ventilation (NIV) can increase or maintain health-related quality of life (HRQoL) for patients with chronic hypercapnic respiratory failure (CHRF). Evidence from studies systematically assessing how NIV-specific factors influence HRQoL is limited. OBJECTIVES: The objective of this study was to describe HRQoL measured by the Severe Respiratory Insufficiency Questionnaire (SRI) in patients with CHRF treated with long-term NIV and to analyze the associations between HRQoL and hypoxemia, hypercapnia, and respiratory events such as apneas, hypopneas (AHI), and patient ventilator asynchrony (PVA) occurring during long-term NIV. METHODS: We included sixty-seven stable patients with established long-term NIV due to neuromuscular disease or thoracic cage disorders in a prospective cross-sectional study at Oslo University Hospital. Patients answered the SRI and underwent daytime arterial blood gases, nocturnal pulse oximetry, sleep polygraphy, and nocturnal transcutaneous CO2. RESULTS: The mean global SRI for 62 patients was 64.8 ± 14.5, with the highest score in SRI Social Relationships (79.5 ± 15.6). There were no differences in HRQoL between the different patient groups. Compliant patients had a significantly higher score in SRI Attendant and Sleep. Residual nocturnal hypoxemia affected both the subscale SRI "Respiratory Complaints" and SRI "Attendant Symptoms and Sleep." Persisting daytime hypercapnia, nocturnal hypoventilation, and high AHI affected the subscale SRI "Anxiety" negatively, while frequent PVA was associated with a lower score in SRI "Physical Function." CONCLUSION: In a group of patients with long-term NIV, undesired respiratory events during NIV are associated with lower HRQoL in several of the SRI subscales. We suggest designing interventional studies to confirm the possible relationship between HRQoL and respiratory events during long-term NIV.

At-home end-tidal carbon dioxide measurement in children with invasive home mechanical ventilation.

BACKGROUND: Carbon dioxide concentration trending is used in chronic management of children with invasive home mechanical ventilation (HMV) in clinical settings, but options for end-tidal carbon dioxide (EtCO2 ) monitoring at home are limited. We hypothesized that a palm-sized, portable endotracheal capnograph (PEC) that measures EtCO2 could be adapted for in-home use in children with HMV. METHODS: We evaluated the internal consistency of the PEC by calculating an intraclass correlation coefficient of three back-to-back breaths by children (0-17 years) at baseline health in the clinic. Pearson's correlation was calculated for PEC EtCO2 values with concurrent mean values of in-clinic EtCO2 and transcutaneous CO2 (TCM) capnometers. The Bland-Altman test determined their level of agreement. Qualitative interviews and surveys assessed usability and acceptability by family-caregivers at home. RESULTS: CO2 values were collected in awake children in varied activity levels and positions (N = 30). The intraclass correlation coefficient for the PEC was 0.95 (p < 0.05). The correlation between the PEC and in-clinic EtCO2 device was 0.85 with a mean difference of -3.8 mmHg and precision of ±1.1 mmHg. The correlation between the PEC and the clinic TCM device was 0.92 with a mean difference of 0.2 mmHg and precision of ±1.0. Family-caregivers (N = 10) trialed the PEC at home; all were able to obtain measurements at home while children were awake and sometimes asleep. CONCLUSIONS: A portable, noninvasive device for measuring EtCO2 was feasible and acceptable, with values that trend similarly to currently in-practice, outpatient models. These devices may facilitate monitoring of EtCO2 at home in children with invasive HMV.

Long-Term Noninvasive Ventilation in Chronic Obstructive Pulmonary Disease: Association between Clinical Phenotypes and Survival.

BACKGROUND: Long-term noninvasive ventilation (LTNIV) is widely used in patients with chronic hypercapnic respiratory failure (CHRF) related to COPD. Prognosis of these patients is however poor and heterogenous. RESEARCH QUESTION: In COPD patients under LTNIV for CHRF, is it possible to identify specific phenotypes which are predictive of probability of pursuing NIV and survival? STUDY DESIGN AND METHODS: A latent class analysis was performed in a COPD population under LTNIV included in a comprehensive database of patients in the Geneva Lake area, to determine clinically relevant phenotypes. The observation period of this subgroup of COPD was extended to allow assessment of survival and/or pursuit of NIV for at least 2 years after inclusion. A logistic regression was conducted to generate an equation accurately attributing an individual patient to a defined phenotype. The identified phenotypes were compared on a series of relevant variables, as well as for probability of pursuing NIV or survival. A competitive risk analysis allowed to distinguish death from other causes of cessation of NIV. RESULTS: Two phenotypes were identified: a "respiratory COPD" profile with very severe airway obstruction, a low or normal body mass index, and a low prevalence of comorbidities and a "systemic COPD" profile of obese COPDs with moderate airway obstruction and a high rate of cardiovascular and metabolic comorbidities. The logistic regression correctly classified 95.7% of patients studied. Probability of pursuing NIV and survival were significantly related to these phenotypes, with a poorer prognosis for "respiratory COPD." Probability of death 5 years after implementing NIV was 22.3% (95% CI: 15.4-32.2) for "systemic COPD" versus 47.2% (37.4-59.6) for "respiratory COPD" (p = 0.001). CONCLUSION: The two distinct phenotypes of COPD under LTNIV for CHRF identified appear to be strongly related to prognosis and require further validation in other cohort studies.

Monitoring Long Term Noninvasive Ventilation: Benefits, Caveats and Perspectives.

Long term noninvasive ventilation (LTNIV) is a recognized treatment for chronic hypercapnic respiratory failure (CHRF). COPD, obesity-hypoventilation syndrome, neuromuscular disorders, various restrictive disorders, and patients with sleep-disordered breathing are the major groups concerned. The purpose of this narrative review is to summarize current knowledge in the field of monitoring during home ventilation. LTNIV improves symptoms related to CHRF, diurnal and nocturnal blood gases, survival, and health-related quality of life. Initially, patients with LTNIV were most often followed through elective short in-hospital stays to ensure patient comfort, correction of daytime blood gases and nocturnal oxygenation, and control of nocturnal respiratory events. Because of the widespread use of LTNIV, elective in-hospital monitoring has become logistically problematic, time consuming, and costly. LTNIV devices presently have a built-in software which records compliance, leaks, tidal volume, minute ventilation, cycles triggered and cycled by the patient and provides detailed pressure and flow curves. Although the engineering behind this information is remarkable, the quality and reliability of certain signals may vary. Interpretation of the curves provided requires a certain level of training. Coupling ventilator software with nocturnal pulse oximetry or transcutaneous capnography performed at the patient's home can however provide important information and allow adjustments of ventilator settings thus potentially avoiding hospital admissions. Strategies have been described to combine different tools for optimal detection of an inefficient ventilation. Recent devices also allow adapting certain parameters at a distance (pressure support, expiratory positive airway pressure, back-up respiratory rate), thus allowing progressive changes in these settings for increased patient comfort and tolerance, and reducing the requirement for in-hospital titration. Because we live in a connected world, analyzing large groups of patients through treatment of "big data" will probably improve our knowledge of clinical pathways of our patients, and factors associated with treatment success or failure, adherence and efficacy. This approach provides a useful add-on to randomized controlled studies and allows generating hypotheses for better management of HMV.

Trigger performance of five pediatric home ventilators and one ICU ventilator depending on circuit type and system leak in a physical model of the lung.

BACKGROUND: The population of children with chronic respiratory failure requiring long-term mechanical ventilation in the home has grown worldwide. The optimal choice from an increasing number of home ventilators commercialized for children is often challenging for the attending physicians. The aim of the present study was to compare the trigger performance of five pediatric bilevel home ventilators and one intensive care unit ventilator depending on circuit type and system leak. METHODS: The trigger performances of the ventilators were compared in combination with all compatible circuits using a physical model of the lung with increasing system leak. The flow generator simulated the patient's breathing effort with flow rates of 2.7-6.4 L/min at a frequency of 30 breaths/min. All ventilators were set to deliver 16 cmH2 O inspiratory pressure support and 4 cmH2 O positive end-expiratory pressure. RESULTS: Trigger thresholds varied from 1.5 to 8 L/min, the pressure rise time to 90% of the maximum from 140 to 385 ms and the trigger work from 0.5 to 6.6 mbar · s. All devices had very short trigger delays below 40 ms. The leak compensation depended on the circuit type. The internal diameter of the circuit had no relevant impact on the trigger performance or the leak compensation. CONCLUSION: We observed considerable differences in the triggering performance of the evaluated home ventilators depending on leak size and type of circuit. Therefore, an optimal combination of device and circuit should consider the patient's age and condition and the probability of system leak.

Shared decision making for children with chronic respiratory failure-It takes a village and a process.

BACKGROUND AND OBJECTIVES: Shared decision making (SDM) before nonurgent tracheostomy in a child with chronic respiratory failure (CRF) is often recommended, but has proven challenging to implement in practice. We hypothesize that utilization of the microsystem model for analysis of the complex ecosystem in which SDM occurs will yield insights that enable formation of a reproducible, measurable SDM process. METHODS: Retrospective chart review of a case series of children with CRF in whom a SDM process was pursued. The process included a palliative care consult, a validated decision aid and 12 key questions designed to elucidate information integral to an informed decision. Investigators reviewed a single hospital admission for each child, focusing on the 3 core elements of a medical microsystem-the patient, the providers, and information. RESULTS: Twenty-nine patients who met inclusion criteria ranged in age from 0 to 19.5 years (median 1.7) and remained in the hospital from 10 to 316 days (median 38). Patients were medically complex with multiple and varied respiratory diagnoses, multiple and varied comorbidities, and varying psychosocial environments. 14/29 children received tracheostomies. Each child encountered a mean of 6.2 medical specialties, 1.9 surgical specialties and 8.5 nonphysician led services. Answers to 12 key questions were not documented systematically and often not found in the electronic medical record. CONCLUSION: A unique SDM microsystem is formed around each child but not optimally utilized. Explicit recognition of these microsystems would enable team formation and an SDM process comprised of measurable steps and communication patterns.

Health-related expectations of the chronically critically ill: a multi-perspective qualitative study.

BACKGROUND: Those who survive critical illness only to become chronically critically ill (CCI) experience a high symptom burden, repeat episodes of illness exacerbation, communication barriers, and poor health outcomes. Yet, it is unclear how CCI individuals and their family understand their health and the importance of prognostic information following hospitalization. The research purpose was to examine expectations about health and disease prognosis of CCI residents in long-term care from the perspectives of the CCI themselves and their family members, as well as to describe healthcare provider (HCP) interpretations of, and reactions to, these health-related expectations. METHODS: In this qualitative interpretive descriptive study, conducted in British Columbia, Canada, 38 semi-structured interviews were conducted (6 CCI residents, 11 family members, and 21 HCPs) and inductively analyzed using thematic and constant comparative techniques. RESULTS: There was divergence in CCI resident, family and HCP expectations about health and the importance of disease prognosis, which contributed to conflict. CCI residents and family viewed conflict with HCPs in relation to their day-to-day care needs, while HCPs viewed this as arising from the unrealistically high expectations of residents and family. The CCI residents and family focussed on the importance of maintaining hope, and the HCPs highlighted the complexity of end-of-life decisions in conjunction with the high expectations and hopes of family. CONCLUSIONS: The emotional and ongoing process of formulating health-related expectations points to the need for future research to inform the development and/or adapting of existing communication, psychosocial and health services interventions to ease the burden experienced by those who are CCI.

Detecting Ventilator-Induced Diaphragmatic Dysfunction Using Point-of-Care Ultrasound in Children With Long-term Mechanical Ventilation.

Long-term mechanical ventilation (MV) is defined as the use of MV for more than 6 hours per day for at least 3 weeks. Children requiring long-term MV include those with neuromuscular disease, central dysregulation, or lung dysfunction. Such children with medical complexity may be at risk for ventilator-induced diaphragmatic dysfunction. Ventilator-induced diaphragmatic dysfunction has been described in adult patients requiring acute MV with ultrasound (US). At this time, diaphragmatic US has not been evaluated in the pediatric post-acute care setting or incorporated into weaning strategies. We present 24 cases of children requiring long-term MV who underwent diaphragmatic US examinations to evaluate for ventilator-induced diaphragmatic dysfunction.

Mechanical Insufflation-Exsufflation With Oscillations in Amyotrophic Lateral Sclerosis With Home Ventilation via Tracheostomy.

BACKGROUND: Mechanical insufflation-exsufflation (MI-E) applied via tracheostomy tubes in patients with amyotrophic lateral sclerosis (ALS) who are on home mechanical ventilation via tracheostomy is an effective procedure for respiratory secretion management. Nonetheless, tenacious secretions may remain and increase the risk of respiratory infections. The aim of this study was to determine whether adding oscillations to MI-E could reduce the rate of respiratory infections and the need for bronchoscopy to remove secretions in patients with ALS on home mechanical ventilation via tracheostomy. METHODS: This was a 2-y, prospective, crossover study. Subjects were treated with conventional MI-E and MI-E with oscillations for 2 alternate 6-month periods. Data were collected on episodes of respiratory infections, hospital admission, and number of bronchoscopy procedures. RESULTS: In the 19 ALS subjects enrolled, the median (interquartile range [IQR]) number of acute respiratory infections per subject was 1.0 (0.5-2.0) in the MI-E period and 0.0 (0.0-2.0) in the MI-E plus oscillations period (P = .92). The median (IQR) number of hospital stays was 0.0 (0.0-1.0) in the MI-E period and 0.0 (0.0-1.0) in the MI-E plus oscillations period (P = .80). The median (IQR) number of bronchoscopies per subject was 0.0 (0.0-1.0) in MI-E period and 0.0 (0.0-0.5) in the MI-E plus oscillations period (P = .26). MI-E plus oscillations treatment had no impact on the risk of respiratory infections (odds ratio 3.71, 95% CI 0.81-16.84, P = .09) or the need for bronchoscopy (odds ratio 2.70, 95% CI 0.44-16.68, P = .29). CONCLUSIONS: Adding oscillations to MI-E therapy in subjects with ALS on home mechanical ventilation via tracheostomy did not decrease the risk of respiratory infections, hospital admission, or need for bronchoscopy.

Transition From an ICU Ventilator to a Portable Home Ventilator in Children.

BACKGROUND: The transition from an ICU ventilator to a portable home ventilator (PHV) for children requiring long-term mechanical ventilation is a crucial step in preparing for discharge home and may not be successful on the first attempt. A review of this process at our institution revealed that some children required multiple trials before they were able to tolerate a PHV. A protocol was developed to standardize the transition process and reduce the number of failed attempts. Key features of the protocol included a transition readiness assessment and criteria for changing to the PHV. METHODS: A retrospective chart review was completed to evaluate the process of changing to a PHV before and after the protocol was in place during the time period of 2011-2018. Primary outcome measures included the number of transition attempts and the length of time to achieve successful transition. A successful transition attempt was defined as the ability to tolerate a PHV for 14 d. RESULTS: The study included 56 children ≤ 3 y old with a tracheostomy who required long-term ventilator support. The majority of subjects were from the neonatal ICU and had a diagnosis of bronchopulmonary dysplasia. There was a significant decrease in the number of attempts (P = .005) and in the length of time (P = .01) to successfully transition to a PHV for those who underwent the protocol. CONCLUSIONS: The process of changing from an ICU ventilator to a PHV in children requiring long-term mechanical ventilation was improved through the use of a standardized protocol. Both the number of failed attempts and the length of time to achieve successful transition were reduced when the protocol was applied. Further study is needed to evaluate other medical and nonmedical factors that may affect successful transition to a PHV.

Healthcare utilization and costs of pediatric home mechanical ventilation in Canada.

BACKGROUND: Children using home mechanical ventilation (HMV) live at home with better quality of life, despite financial burden for their family. Previous studies of healthcare utilization and costs have not considered public and private expenditures, including family caregiver time. Our objective was to examine public and private healthcare utilization and costs for children using HMV, and variables associated with highest costs. METHODS: Longitudinal, prospective, observational cost analysis study (2012-2014) collecting data on public and private (out-of-pocket, third-party insurance, and caregiving) costs every 2 weeks for 6 months using the Ambulatory Home Care Record. Functional Independence Measure (FIM), WeeFIM, and Caregiving Impact Scale (CIS) were measured at baseline and study completion. Regression modeling examined a priori selected variables associated with monthly costs using Andersen and Newman's framework for healthcare utilization, relevant literature, and clinical expertise. Data are reported in 2015 Canadian dollars ($1CAD = $0.78USD). RESULTS: Forty two children and their caregivers were enrolled. Overall median (interquartile range) monthly healthcare cost was $12 131 ($8159-$15 958) comprising $9929 (89%) family caregiving hours, $996 (9%) publicly funded, and $252 (2%) out-of-pocket (<1% third-party insurance) costs. With higher FIM score (lower dependency), median costs were reduced by 4.5% (95% confidence interval: 8.3%-0.5%), adjusted for age, sex, tracheostomy, and daily ventilation duration. Note: since the three cost categories did not sum to the total statistically derived median cost, the percentage of each category used the sum of median public + caregiver lost time + private out-of-pocket + third-party insurance as the denominator. CONCLUSIONS: For HMV children, most healthcare costs were due to family caregiving costs. More dependent children incur highest costs. The financial burden to family caregivers is substantial and needs to considered in future policy decisions related to pediatric HMV.

Attributable Delay of Discharge for Children with Long-Term Mechanical Ventilation.

OBJECTIVE: To assess the reasons for discharge delays for children with long-term mechanical ventilation. STUDY DESIGN: Charts of children (0-18 years of age) with a new tracheostomy in the Pulmonary Habilitation Program at the Ann and Robert H. Lurie Children's Hospital of Chicago were retrospectively reviewed for demographic information, medical diagnoses, medical stability, discharge to home, reasons for discharge delay, and hours of staffed home nursing. All patients were discharged on mechanical ventilation. Discharge delay was defined as >10 days after medical stability. Hospital charges were analyzed and excess charges quantified beginning with the date of delay. Descriptive statistics and Pearson χ2 tests were used to compare nursing hours and demographics. RESULTS: Of 72 patients, 55% were male with mean age 1.8 years (SD 3.8) at tracheostomy placement. The most common long-term mechanical ventilation indication was chronic lung disease (n = 47, 65%); 54% had discharge delays, the majority were primarily due to lack of home nursing (62%), followed by delay of caregiver training (18%), caregiver health and social issues (8%), and delay in a transitional care facility bed (8%). Of the 39 delayed patients, 10% ($13 217 889) of hospital charges occurred during excess days with a median of $186 061 (IQR $117 661-$386 905) per patient. CONCLUSIONS: Over one-half of children discharged to the community from a large inpatient pediatric long-term mechanical ventilation program had a nonmedical delay of discharge home, most commonly because of home nurse staffing. This case series provides further evidence that limited availability of home nursing impedes efficient discharge and prolongs hospitalizations.

Health-related quality of life as predictor for mortality in patients treated with long-term mechanical ventilation.

BACKGROUND: The Severe Respiratory Insufficiency (SRI) questionnaire is a specific measure of health-related quality of life (HRQoL) in patients treated with long-term mechanical ventilation (LTMV). The aim of the present study was to examine whether SRI sum scores and related subscales are associated with mortality in LTMV patients. METHODS: The study included 112 LTMV patients (non-invasive and invasive) from the Norwegian LTMV registry in Western Norway from 2008 with follow-up in August 2014. SRI data were obtained through a postal questionnaire, whereas mortality data were obtained from the Norwegian Cause of Death Registry. The SRI questionnaire contains 49 items and seven subscales added into a summary score (range 0-100) with higher scores indicating a better HRQoL. The association between the SRI score and mortality was estimated as hazard ratios (HRs) with 95% confidence intervals (95% CI) using Cox regression models and HRs were estimated per one unit change in the SRI score. RESULTS: Of the 112 participating patients in 2008, 52 (46%) had died by August 2014. The mortality rate was the highest in patients with chronic obstructive pulmonary disease (75%), followed by patients with neuromuscular disease (46%), obesity hypoventilation syndrome (31%) and chest wall disease (25%) (p < 0.001). Higher SRI sum scores in 2008 were associated with a lower mortality risk after adjustment for age, education, hours a day on LTMV, time since initiation of LTMV, disease category and comorbidity (HR 0.98, 95% CI: 0.96-0.99). In addition, SRI-Physical Functioning (HR 0.98, 95% CI: 0.96-0.99), SRI-Psychological Well-Being (HR 0.98, 95% CI: 0.97-0.99), and SRI-Social Functioning (HR 0.98, 95% CI: 0.97-0.99) remained significant risk factors for mortality after covariate adjustment. In the subgroup analyses of patient with neuromuscular diseases we found significant inverse associations between some of the SRI subscales and mortality. CONCLUSIONS: SRI score is associated with mortality in LTMV-treated patients. We propose the use of SRI in the daily clinic with repeated measurements as part of individual follow-up. Randomized clinical trials with interventions aimed to improve HRQoL in LTMV patients should consider the SRI questionnaire as the standard HRQoL measurement.