Much of the common practice in paediatric mechanical ventilation is based on personal experiences and what paediatric critical care practitioners have adopted from adult and neonatal experience. This presents a barrier to planning and interpretation of clinical trials on the use of specific and targeted interventions. We aim to establish a European consensus guideline on mechanical ventilation of critically children. The European Society for Paediatric and Neonatal Intensive Care initiated a consensus conference of international European experts in paediatric mechanical ventilation to provide recommendations using the Research and Development/University of California, Los Angeles, appropriateness method. An electronic literature search in PubMed and EMBASE was performed using a combination of medical subject heading terms and text words related to mechanical ventilation and disease-specific terms. The Paediatric Mechanical Ventilation Consensus Conference (PEMVECC) consisted of a panel of 15 experts who developed and voted on 152 recommendations related to the following topics: (1) general recommendations, (2) monitoring, (3) targets of oxygenation and ventilation, (4) supportive measures, (5) weaning and extubation readiness, (6) normal lungs, (7) obstructive diseases, (8) restrictive diseases, (9) mixed diseases, (10) chronically ventilated patients, (11) cardiac patients and (12) lung hypoplasia syndromes. There were 142 (93.4%) recommendations with “strong agreement”. The final iteration of the recommendations had none with equipoise or disagreement. These recommendations should help to harmonise the approach to paediatric mechanical ventilation and can be proposed as a standard-of-care applicable in daily clinical practice and clinical research.

https://link.springer.com/content/pdf/10.1007%2Fs00134-017-4920-z.pdf

Recommendations for mechanical ventilation of critically ill children from the Paediatric Mechanical Ventilation Consensus Conference (PEMVECC)

SummaryBackground
Canadian longitudinal data from a pediatric domiciliary long-term mechanical ventilation (LTMV) program is lacking.

Objective
Our aim was to report on the clinical characteristics and trends of children followed in one of Canada's pediatric home ventilation programs over the past 20 years.

Methods
A retrospective chart review was conducted on patients receiving long-term domociliary mechanical ventilation between January 1, 1991 and December 31, 2011 in a single center. Domiciliary long-term mechanical ventilation was defined as the daily use of invasive mechanical ventilation (IMV) or noninvasive positive pressure ventilation (NiPPV) for at least 3 months, in the users' home or in a long-term residential facility.

Results
Between 1991 and 2011, a total of 379 children were identified (313 [83%] with noninvasive ventilation). The median age at initiation was 9.6 years (interquartile range [IQR] 2.9–13.9), the median duration of ventilation was 2.2 years (IQR 0.8–4.9) and 53% were male. Ninety-nine percent of children were cared for at home. The reason for ventilation was “musculoskeletal” in origin for the majority of children. The number of children receiving long-term mechanical ventilation at home increased from 2 in 1991 to 156 children as of December 2011. There was a twofold increase in the number of invasive ventilation initiations in the second 10 years, n = 45 (2001–2011) as compared to the first 10 years, n = 21 (1991–2000). However, there was more than a fivefold increase in the number of noninvasive initiations in the first 10 years, n = 50 (1991–2000) as compared to the second 10 years, n = 263 (2001–2011). The largest growth was in the 13–18 years age group. There were 55 (15%) mortalities over the study period.

Conclusions
In summary, our 20-year retrospective study has shown that there has been an exponential growth in the number of children receiving domiciliary LTMV with the majority of children having favorable outcomes. Our study represents a step towards developing a Canadian registry to design and implement programmatic change for this medically complex population to ensure best practice for these children as well as their families. Pediatr Pulmonol. 2014; 49:816–824. © 2013 Wiley Periodicals, Inc.

Pediatric long-term home mechanical ventilation: twenty years of follow-up from one Canadian center.

Background Cross-sectional studies have suggested a rapid expansion in paediatric long-term ventilation (LTV) over the last 20 years but information on longitudinal trends is limited. Methods Data were collected prospectively on all patients receiving LTV over a 15-year period (1.1.95–31.12.09) in a single regional referral centre. Results 144 children commenced LTV during the 15-year period. The incidence of LTV increased significantly over time, with an accompanying 10-fold increase in prevalence due to a significant increase in institution of non-invasive ventilation (NIV). There was no significant increase in invasive ventilation. 5-year survival was 94% overall and was significantly higher for patients on NIV (97%) than invasively ventilated patients (84%). 10-year survival was 91% overall. Although some children were able to discontinue respiratory support (21% at 5 years and 42% at 10 years), the number of patients transitioned to adult services increased significantly over time (26% of total cohort). Patients with neuromuscular disease were less likely to discontinue support than other patients. Conclusions The paediatric LTV population has expanded significantly over 15 years. Future planning of paediatric hospital and community services, as well as adult services, must take into account the needs of this growing population.

https://adc.bmj.com/content/archdischild/98/9/660.full.pdf

Long-term ventilation in children: longitudinal trends and outcomes

BACKGROUND: No comprehensive Canadian national data describe the prevalence of and service provision for ventilator-assisted individuals living at home, data critical to health-care system planning for appropriate resourcing. Our objective was to generate national data profiling service providers, users, types of services, criteria for initiation and monitoring, ventilator servicing arrangements, education, and barriers to home transition. METHODS: Eligible providers delivering services to ventilator-assisted individuals (adult and pediatric) living at home were identified by our national provider inventory and referrals from other providers. The survey was administered via a web link from August 2012 to April 2013. RESULTS: The survey response rate was 152/171 (89%). We identified 4,334 ventilator-assisted individuals: an estimated prevalence of 12.9/100,000 population, with 73% receiving noninvasive ventilation (NIV) and 18% receiving intermittent mandatory ventilation (9% not reported). Services were delivered by 39 institutional providers and 113 community providers. We identified variation in initiation criteria for NIV, with polysomnography demonstrating nocturnal hypoventilation (57%), daytime hypercapnia (38%), and nocturnal hypercapnia (32%) as the most common criteria. Various models of ventilator servicing were reported. Most providers (64%) stated that caregiver competency was a prerequisite for home discharge; however, repeated competency assessment and retraining were offered by only 45%. Important barriers to home transition were: insufficient funding for paid caregivers, equipment, and supplies; a shortage of paid caregivers; and negotiating public funding arrangements. CONCLUSIONS: Ventilatory support in the community appears well-established, with most individuals managed with NIV. Although caregiver competency is a prerequisite to discharge, ongoing assessment and retraining were infrequent. Funding and caregiver availability were important barriers to home transition.

http://rc.rcjournal.com/content/respcare/60/5/695.full.pdf

Home mechanical ventilation in Canada: a national survey

BACKGROUND: Spinal muscular atrophy type 1 (SMA1) is a progressive disease and is usually fatal in the first year of life.

METHODS: A retrospective chart review was performed of SMA1 patients and their outcomes according to the following choices: letting nature take its course (NT); tracheostomy and invasive mechanical ventilation (TV); continuous noninvasive respiratory muscle aid (NRA), including noninvasive ventilation; and mechanically assisted cough.

RESULTS: Of 194 consecutively referred patients enrolled in this study (103 males, 91 females), NT, TV, and NRA were chosen for 121 (62.3%), 42 (21.7%), and 31 (16%) patients, respectively. Survival at ages 24 and 48 months was higher in TV than NRA users: 95% (95% confidence interval: 81.8%–98.8%) and 67.7% (95% confidence interval: 46.7%–82%) at age 24 months ( P < .001) and 89.43% and 45% at age 48 months in the TV and NRA groups, respectively ( P < .001). The choice of TV decreased from 50% (1992–1998) to 12.7% (2005–2010) ( P < .005) with a nonstatistically significant increase for NT from 50% to 65%. The choice of NRA increased from 8.1% (1999–2004) to 22.7% (2005–2010) ( P < .001).

CONCLUSIONS: Long-term survival outcome is determined by the choice of the treatment. NRA and TV can prolong survival, with NRA showing a lower survival probability at ages 24 and 48 months.

* Abbreviations:
 CI — : confidence interval
 MAC — : mechanically assisted coughing
 NIV — : noninvasive bilevel ventilation
 NRA — : noninvasive respiratory aid
 NT — : no treatment
 SMA — : spinal muscular atrophy
 SMA1 — : spinal muscular atrophy type 1
 Spo2 — : pulse oxygen saturation
 TV — : tracheostomy and invasive mechanical ventilation

Survival of patients with spinal muscular atrophy type 1.

Background

Improved technology, as well as professional and parental awareness, enable many ventilator-dependent children to live at home. However, the profile of this growing population, the quality and adequacy of home care, and patients' needs still require thorough assessment.



Objectives

To define the characteristics of Italian children receiving long-term home mechanical ventilation (HMV) in Italy.



Methods

A detailed questionnaire was sent to 302 National Health Service hospitals potentially involved in the care of HVM in children (aged <17 years). Information was collected on patient characteristics, type of ventilation, and home respiratory care.



Results

A total of 362 HMV children was identified. The prevalence was 4.2 per 100,000 (95% CI: 3.8–4.6), median age was 8 years (interquartile range 4–14), median age at starting mechanical ventilation was 4 years (1–11), and 56% were male. The most frequent diagnostic categories were neuromuscular disorders (49%), lung and upper respiratory tract diseases (18%), hypoxic (ischemic) encephalopathy (13%), and abnormal ventilation control (12%). Medical professionals with nurses (for 62% of children) and physiotherapists (20%) participated in the patients' discharge from hospital, though parents were the primary care giver, and in 47% of cases, the sole care giver. Invasive ventilation was used in 41% and was significantly related to young age, southern regional residence, longer time spent under mechanical ventilation, neuromuscular disorders, or hypoxic (ischemic) encephalopathy.



Conclusions

Care and technical assistance of long-term HMV children need assessment, planning, and resources. A wide variability in pattern of HMV was found throughout Italy. An Italian national ventilation program, as well as a national registry, could be useful in improving the care of these often critically ill children. Pediatr. Pulmonol. 2011; 46:566–572. © 2011 Wiley-Liss, Inc.

https://hal.archives-ouvertes.fr/hal-00613787/document

Long-term home ventilation of children in Italy: A national survey

BACKGROUND: To date, few studies have been published regarding the number of children in Italy who require long-term mechanical ventilation (LTV) and their underlying diagnoses, ventilatory needs and hospital discharge rate METHODS: A preliminary national postal survey was conducted and identified 535 children from 57 centers Detailed data were then obtained for 378 children from 30 centers RESULTS: The estimated prevalence in Italy of this population was 43/100000 The majority of children (722%) were followed in pediatric units The primary physicians who cared for these patients were either pediatric intensivists or pediatric pulmonologists Neurological patients (782% of cases) represented the principal disorder category 572% of the patients were non-invasively ventilated, with a nasal mask being the most common interface (85% of cases) The presence of clinical symptoms that were associated with abnormal findings on diagnostic testing was the primary indication for ventilatory support, whereas weaning failure was the primary indication for tracheotomy Invasive ventilation was significantly related to younger age, longer daily hours on ventilation and cerebral palsy Ventilatory modes with guaranteed minimal tidal volume were more often used in patients with tracheotomy Despite their age, illness severity and need for technological care, 98% of the study population were successfully home discharged CONCLUSION: Managing pediatric home LTV requires tremendous effort on the part of the patient's family and places a significant strain on community financial resources In particular, neurological patients require more health care than patients in other categories To further improve the quality of care for these patients, it is essential to establish a dedicated national database

Invasive and non-invasive long-term mechanical ventilation in Italian children.

Neuromuscular patients as candidates for non invasive ventilation during the weaning process.

Patients with neuromuscular disorders are at high risk of intraoperative and postoperative complications. General anesthesia in these patients may exacerbate respiratory and cardiovascular failure due to a marked sensitivity to several anesthetic drugs. Moreover, succinylcholine and halogenated agents can trigger life-threatening reactions, such as malignant hyperthermia, rhabdomyolysis and severe hyperkalemia. Therefore, regional anesthesia should be used whenever possible. If general anesthesia is unavoidable, special precautions must be taken. In particular, for patients at increased risk of respiratory complications (i.e., postoperative atelectasis, acute respiratory failure, nosocomial infections), noninvasive ventilation associated with aggressive airway clearance techniques can successfully treat upper airway obstruction, hypoventilation and airway secretion retention, avoiding prolonged intubation and tracheotomy. Anesthesia and perioperative management of patients with neuromuscular disorders are described in this article. To grade the strength of recommendations and the quality of evidence we adopted the GRADE approach. In case of low-quality evidence, these recommendations represent the collective opinion of the expert panel.

/pdf/recommendations-for-anesthesia-and-perioperative-management-1l2i90rqdl.pdf

Recommendations for anesthesia and perioperative management of patients with neuromuscular disorders

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Long-term home ventilation of children in Italy: A national survey

Invasive and non-invasive long-term mechanical ventilation in Italian children.

Neuromuscular patients as candidates for non invasive ventilation during the weaning process.

Recommendations for anesthesia and perioperative management of patients with neuromuscular disorders