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Rationale: Home mechanical ventilation (HMV) is an advanced medical therapy offered to children with medical complexity. Despite the growing pediatric HMV population in North America, there are limited studies describing healthcare use and predictors of highest costs using robust health administrative data. Objectives: To describe patterns of healthcare use and costs in children receiving HMV over a 14-year period in Ontario, Canada. Methods: We conducted a retrospective population-based cohort study (April 1, 2003, to March 31, 2017) of children aged 0–18 years receiving HMV via invasive mechanical ventilation or noninvasive ventilation. Paired t tests compared healthcare system use and costs 2 years before and 2 years after HMV approval. We developed linear models to analyze variables associated with children in the top quartile of health service use and costs. Results: We identified 835 children receiving HMV. In the 2 years after HMV approval compared with the 2 years prior, children had decreased hospitalization days (median, 9 [interquartile range, 3–30] vs. 29 [6–99]; P < 0.0001) and intensive care unit admission days (6.6 [1.9–18.0] vs. 17.1 [3.3–70.9]; P < 0.0001) but had increased homecare service approvals (195 [24–522] vs. 40 [12–225]; P < 0.0001) and outpatient pulmonology visits (3 [1–4] vs. 2 [1–3]; P < 0.0001). Total healthcare costs were higher in the 2 years after HMV approval (mean, CAD$164,892 [standard deviation, CAD$214,187] vs. CAD$128,941 [CAD$194,199]; P < 0.0001). However, all-cause hospital admission costs were reduced (CAD$66,546 [CAD$142,401] vs. CAD$81,578 [CAD$164,672]; P < 0.0001). The highest total 2-year costs were associated with invasive mechanical ventilation (odds ratio [OR], 3.45; 95% confidence interval [CI], 2.24–5.31; reference noninvasive ventilation), number of medical devices at home (OR, 1.63; 95% CI, 1.35–1.96; reference no technology), and increased healthcare costs in the year before HMV initiation (OR, 2.23; 95% CI, 1.84–2.69). Conclusions: Children progressing to the need for HMV represent a worsening in their respiratory status that will undoubtedly increase healthcare use and costs. We found that the initiation of HMV in these children can reduce inpatient healthcare use and costs but can still increase overall healthcare expenditures, especially in the outpatient setting. [ABSTRACT FROM AUTHOR]

X-linked myotubular myopathy (XLMTM) is a rare, life-threatening congenital myopathy. Most (80%) children with XLMTM have profound muscle weakness and hypotonia at birth resulting in severe respiratory insufficiency, the inability to sit up, stand or walk, and early mortality. At birth, 85–90% of children with XLMTM require mechanical ventilation, with more than half requiring invasive ventilator support. Historically, ventilator-dependent children with neuromuscular-derived respiratory failure of this degree and nature, static or progressive, are not expected to achieve complete independence from mechanical ventilator support. In the ASPIRO clinical trial (NCT03199469), participants receiving a single intravenous dose of an investigational gene therapy (resamirigene bilparvovec) started showing significant improvements in daily hours of ventilation support compared with controls by 24 weeks post-dosing, and 16 of 24 dosed participants achieved ventilator independence between 14 and 97 weeks after dosing. At the time, there was no precedent or published guidance for weaning chronically ventilated children with congenital neuromuscular diseases off mechanical ventilation. When the first ASPIRO participants started showing dramatically improved respiratory function, the investigators initiated efforts to safely wean them off ventilator support, in parallel with primary protocol respiratory outcome measures. A group of experts in respiratory care and physiology and management of children with XLMTM developed an algorithm to safely wean children in the ASPIRO trial off mechanical ventilation as their respiratory muscle strength increased. The algorithm developed for this trial provides recommendations for assessing weaning readiness, a stepwise approach to weaning, and monitoring of children during and after the weaning process. [ABSTRACT FROM AUTHOR]

Rationale: Information is limited about the association between obstructive sleep apnea (OSA) and mental health disorders in children. Objectives: In children, 1) to evaluate the association between OSA and new mental healthcare encounters; and 2) to compare mental healthcare encounters 2 years after to 2 years before OSA treatment initiation. Methods: We conducted a retrospective longitudinal cohort study using Ontario health administrative data (Canada). Children (0–18 yr) who underwent diagnostic polysomnography (PSG) 2009–2016 and met criteria for definition of moderate-severe OSA (PSG-OSA) were propensity score weighted by baseline characteristics and compared with children who underwent PSG in the same period but did not meet the OSA definition (PSG-No-OSA). Children were followed until March 2021. Weighted cause-specific Cox proportional hazards and modified Poisson regression models were used to compare time from PSG to first mental healthcare encounter and frequency of new mental healthcare encounters per person time, respectively. Among those who underwent adenotonsillectomy (AT) or were prescribed and claimed positive airway pressure therapy (PAP), we used age-adjusted conditional logistic regression models to compare 2 years post-treatment to pretreatment odds of mental healthcare encounters. Results: Of 32,791 children analyzed, 7,724 (23.6%) children met criteria for moderate-severe OSA. In the PSG-OSA group, 7,080 (91.7%) were treated (AT or PAP). Compared with PSG-No-OSA, the PSG-OSA group had a shorter time from PSG to first mental healthcare encounter (hazard ratio, 1.08; 95% confidence interval [CI], 1.05–1.12) but less frequent mental healthcare encounters in follow-up (rate ratio, 0.92; 95% CI, 0.87–0.97). OSA treatment (AT or PAP) was associated with lower odds of mental healthcare encounters 2 years after treatment initiation compared with 2 years before (odds ratio, 0.69; 95% CI, 0.65–0.74). Conclusions: In this large, population-based study of children who underwent PSG for sleep disorder assessment, OSA diagnosis/treatment was associated with an improvement in some mental health indicators, such as fewer new mental healthcare encounters compared with no OSA and lower odds of mental healthcare encounters compared with before OSA treatment. [ABSTRACT FROM AUTHOR]

Introduction The COVID-19 pandemic has been an unprecedented threat to our health care system. Clinicians had to pivot and develop creative and timely "virtual" solutions to provide clinical care. Our aim was to develop a standardized approach to virtual "mask fitting" for children who are either being initiated or are already on existing long-term ventilation (LTV) at a pediatric hospital. Case and outcomes We present three cases involving the care of children who required mask fitting for noninvasive ventilation (NIV). LTV team consultations were delivered via videoconference or phone. With the guidance of the respiratory therapist (RT), the family caregiver (FC) took measurements on their child using a standardized clinical approach (developed by the LTV RTs). Based on the measurements, an appropriate mask was selected. Successful mask fit was based on patient/FC reports, as well as objective leak data obtained from the NIV download data. Discussion Virtual clinics used for managing patients in our LTV program were feasible and efficient resulting in improved workflow for the RTs and convenience for patients and FCs. Patients and FCs had significantly less pressure to attend in-person clinics and expressed high satisfaction in terms of their experience and importantly, meeting respiratory care needs. Within the context of COVID-19, remote patient education and intervention can be delivered effectively, while reducing the risk of exposure from in-person visits to hospital. Conclusion A virtual/telemedicine program to manage pediatric patients requiring mask fitting for LTV was a feasible option during COVID-19.