Home Mechanical Ventilation Research Articles

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

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. 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. 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. 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.

Certification by the German Society for Neurorehabiliation, DGNR : Performance and quality of the "Centers for weaning from aventilator in early neurological and neurosurgical rehabilitation"

Certification of centers for weaning from aventilator in neurological neurosurgical early rehabilitation (NNER) by the German Society for Neurorehabilitation (DGNR) is possible since 1 October 2021. The results of certification of facilities in the first year after starting the procedure are presented. As part of the certification process 28criteria are assessed including aset of mandatory characteristics of the facility. The criteria are divided into structural criteria (i = 7), diagnostic criteria (i = 6), personnel criteria (i = 3), internal organization criteria (i = 7), and quality management criteria (i = 5). A total of 13 centers were certified in the first year, with acombined total of 283 beds for weaning from aventilator in the NNER and served 2278 persons to be weaned from aventilator in the year before certification, with amedian of 134 per facility (range 44-414). Only rarely was weaning unsuccessful, requiring conversion to home mechanical ventilation before discharge (invasive home mechanical ventilation median per facility 10persons, range 2-25; non-invasive home mechanical ventilation median 0persons, range 0-57). Ahigh level of process and structural quality was documented for the certified centers: across all areas of assessment, the individual certification criteria were met in the vast majority of cases (median degree of complete fulfilment 86%) or met with improvement potentials documented by the auditors (median 11%). Successful weaning in NNER and ahigh level of process and structural quality can be demonstrated by the certification results of centers that follow this integrative approach to weaning from aventilator in aNNER setting.

Role of respiratory characteristics in treatment adherence with noninvasive home mechanical ventilation in myotonic dystrophy type 1, a retrospective study

Chronic respiratory insufficiency is common in patients with myotonic dystrophy type 1 (DM1) and can be treated with noninvasive home mechanical ventilation (HMV). HMV is not always tolerated well resulting in low treatment adherence. We aimed to analyze if baseline respiratory characteristics such as pulmonary function, level of pCO2 and presence of sleep apnea are associated with HMV treatment adherence in DM1 patients. Pulmonary function testing, polysomnography and blood gas measurement data of DM1 patients were retrospectively collected. Initiation of HMV and treatment adherence after one year was documented. Patients with low treatment adherence (average daily use of HMV <5 h) were grouped with patients that discontinued HMV and compared with patients with high treatment adherence (average daily use of HMV >5 h). HMV was initiated in 101 patients. After one year, 58 patients had low treatment adherence. There were no differences between the low and high treatment adherence group regarding the respiratory characteristics. None of the included predictors (gender, age, body mass index, cytosine-thymine-guanine repeat length, FVC, daytime pCO2, bicarbonate, nighttime pCO2, nighttime base excess, apnea-hypopnea index and mean saturation during sleep) was able to significantly predict high treatment adherence. In conclusion, the respiratory characteristics are not associated with treatment adherence with HMV in DM1 patients and cannot be used to identify patients at risk for low HMV treatment adherence.

Evaluation of Demographic, Clinical Characteristics and Laboratory Values of Pediatric Patients Followed in Palliative Care

Background/Aims: The importance of pediatric palliative care centers, which we think is insufficient both in the world and in our country, is increasing. The aim of this study is to reveal the demographic, clinical and laboratory characteristics of pediatric patients followed in a palliative care center.&#x0D; Methods: In this retrospective study, demographic data (age, gender), laboratory findings (platelet, mean platelet volume, lymphocyte, neutrophil counts, glucose, sodium, potassium, urea) of pediatric patients followed up in an adult palliative care center between 18.10.2018 and 15.01.2023, creatinine, albumin and the C-reactive protein, CRP/albumin ratio, platelet/lymphocyte ratio and neutrophil/lymphocyte ratio) and clinical features (length of stay in PCU and survival) were evaluated.&#x0D; Results: It was determined that 61 pediatric patients between the ages of 2-17 were followed up in the palliative care center between 18 October 2018 and 15 January 2023. 65.6% of the patients were male and 6.6% were Syrian citizens. The duration of stay in the palliative care center was between 1-64 days. While 16.4% of the patients had tracheostomy, 14.8% needed home mechanical ventilator. Only 3 (4.9%) patients received parenteral nutrition. The diagnosis of admission to the palliative care center of 47 (77.0%) patients included in the study had neurological sequelae after head trauma. The mortality rate was 1.6%.&#x0D; Conclusions: It is obvious that the centers are insufficient in the face of the increasing need for pediatric palliative care. Although adult palliative care centers are compensating for this deficiency at this stage, it is clearly seen that the number of pediatric palliative care centers should be increased in the future.

Risk of death at home or on hospital readmission after discharge with pediatric tracheostomy.

To evaluate outcomes of patients discharged home following tracheostomy, including the timing and place of death for non-survivors. We retrospectively reviewed medical records of infants undergoing tracheostomy between 2006 and 2017, within the first year of life for congenital or acquired neonatal conditions. Of the 224 patients discharged after tracheostomy, 127 (57%) required home mechanical ventilation (MV). Overall, 40 (18%) patients died (65% were on MV); 38% of the deaths occurred at home and 63% at a subsequent hospitalization. Having tube feeding was identified as significantly associated with increased mortality on multivariate analysis. Having a tracheostomy for upper airway obstruction was the only variable significantly associated with increased risk of death at home on multivariate analysis. Having tube feeding was associated with increased risk of death overall and having the tracheostomy for obstructive airway conditions was associated with death occurring at home.

Toward a safe home: Experiencing the transition to an outpatient setting with home mechanical ventilation. A thematic analysis

Toward a safe home: Experiencing the transition to an outpatient setting with home mechanical ventilation. A thematic analysis Abstract. Background: With the progress in medical options, the need for home mechanical ventilation increases. The transition from long-term ventilation in an institution to home mechanical ventilation in an outpatient setting is a difficult phase in terms of setting up the network of care, coordination of care for those with the ventilatory insufficiency and the financing. Aim: The study describes how patients with ventilatory insufficiency and family caregivers experience the transition from an institution to an ambulatory setting with invasive or non-invasive home mechanical ventilation. Methods: A qualitative research design with a social-constructivist approach was adopted using thematic analysis according to Braun and Clarke. We included seven German-speaking patients (≥ 18 years old) with ventilatory insufficiency and home mechanical ventilation (> 6 h/day) from the German part of Switzerland, with discharge from an institution to home, and five family caregivers who care for patients with the described criteria. Results: The institution was seen as a safe place. Affected persons and their family caregivers had to create a safe environment at home. Three themes were formed inductively: To gradually build trust with each other, to become experts as family caregivers, to align their own network with the new care needs.Conclusions: The transition home succeeds in the interplay of gaining trust, building expertise, and creating sustainable networks. Professionals can use this knowledge to provide targeted support to patients with home mechanical ventilation and their family caregivers.

Respiratory features of centronuclear myopathy in the Netherlands

Centronuclear myopathy (CNM) is a heterogeneous group of muscle disorders primarily characterized by muscle weakness and variable degrees of respiratory dysfunction caused by mutations in MTM1, DNM2, RYR1, TTN and BIN1. X-linked myotubular myopathy has been the focus of recent natural history studies and clinical trials. Data on respiratory function for other genotypes is limited. To better understand the respiratory properties of the CNM spectrum, we performed a retrospective study in a non-selective Dutch CNM cohort. Respiratory dysfunction was defined as an FVC below 70% of predicted and/or a daytime pCO2 higher than 6 kPa. We collected results of other pulmonary function values (FEV1/FVC ratio) and treatment data from the home mechanical ventilation centres. Sixty-one CNM patients were included. Symptoms of respiratory weakness were reported by 15/47 (32%) patients. Thirty-three individuals (54%) with different genotypes except autosomal dominant (AD)-BIN1-related CNM showed respiratory dysfunction. Spirometry showed decreased FVC, FEV1 & PEF values in all but two patients. Sixteen patients were using HMV (26%), thirteen of them only during night-time. In conclusion, this study provides insight into the prevalence of respiratory symptoms in four genetic forms of CNM in the Netherlands and offers the basis for future natural history studies.

Parental Perception and Barriers Regarding COVID-19 Vaccination in Technology Dependent Children

Children who use chronic home mechanical ventilation are at high risk for respiratory infections and mortality. They are also at increased risk for developing severe COVID-19 infection. The primary goal of this study was to evaluate the parental perception of the COVID-19 vaccine in pediatric patients with technology dependence. We conducted a cross-sectional survey at a children's hospitalbetween September 2021 and February 2022. A telephone or in-person interview was conducted to assesss parental attitudes toward the COVID-19 vaccine for their technology-dependent child. Technology-dependent groups included patients requiring (1) invasive mechanical ventilation via tracheostomy and (2) noninvasive mechanical ventilation via a facial interface. Fourteen of 44 participants (32%) of technology-dependent children were vaccinated for COVID-19 despite high parental vaccination and influenza vaccination rates. Twenty-eight patients (63% of total participants) were tracheostomy dependent. In the tracheostomy group, the COVID-19 vaccine rate was 28% versus 54% in the nontracheostomy group. Concern for vaccine side effects was the major reason for vaccine hesitancy(53%). More parents of vaccinated children than unvaccinated children were counseled by their primary care provider (85.7% vs. 46.7%; p = .02) or subspecialist (93% vs. 47%; p = .003). Our findings suggest counseling by primary care providers and subspecialistsis important in overcoming COVID-19 vaccine hesitancy. Social media was identified as a major source of information, particularly among parents of unvaccinated patients.

Tracheostomy decannulation in children: a proposal for a structured approach on behalf of the working group chronic respiratory insufficiency within the German-speaking society of pediatric pulmonology.

The number of children with tracheostomies with and without home mechanical ventilation has grown continuously in recent years. For some of these children, the need for tracheostomy resolves and the child can be weaned from the tracheal cannula. Choosing the optimal time point for decannulation after elaborated prior diagnostic work-up needs careful consideration. The decannulation process requires an interdisciplinary team; however, these specialized structures for the experienced care of these children with tracheostomy are not available in all areas. The Working Group on Chronic Respiratory Insufficiency in the German Speaking Pediatric Pneumology Society (GPP) developed these recommendations to guide through a decannulation process. Initial evaluation of decannulation feasibility starts in the outpatient clinic with a detailed history, examination, and a speaking valve trial and is followed by an inpatient workup including sleep study, airway endoscopy and possibly modifications of the tracheal cannula. Downsizing the tracheal cannula allows a stepwise controlled weaning prior to removal of the tracheal cannula. After shrinking of the tracheostomy, the final surgical closure is performed. Conclusion: An algorithm with diagnostic and therapeutic procedures for a safe and successful decannulation process is proposed. What is Known: • In children tracheostomy decannulation is a complex process that requires careful preparation and surveillance. What is New: • This statement of the German speaking society of pediatric pulmonology provides an expert practice guidance on the decannulation procedure and the value of one-way speaking valves.

Starting Points for Promoting Disaster Resilience in Home Nursing Care in Germany–A Participatory Development Process

Introduction:In Germany, more than 3.3 million people in need of long-term care are receiving home care. Although not all of them use professional home care providers, their services are essential especially to those who need skilled nursing care and medical-technical assistance in addition to everyday support–such as approximately 30,000 people who receive home mechanical ventilation. Little is known about the disaster resilience of home care infrastructures and ways to strengthen them. A research consortium called AUPIK, funded by the German Federal Ministry of Education and Research from 2020-2023, sought to close this gap.Method:A participatory process was initiated as part of the AUPIK project based on results of a multi-perspective empirical baseline analysis which resulted in a first draft text about measures to promote disaster resilience in home care. 37 representatives of home nursing care providers and community health-care services, professional boards, scientific and education institutions participated in a web-based survey on the draft text, followed by two digital group discussions. Finally, the gradually revised, condensed and consented starting points were published and distributed.Results:Eight starting points were defined. Among others, there is an urgent need to strengthen risk awareness and resource management among home care providers, to promote individual disaster competence and preparedness among all parties involved and, not least, to strengthen community-based networking initiatives between home care providers, emergency and disaster organizations and local authorities. Institutions or persons who should take responsibility for implementation at different levels are addressed directly.Conclusion:The final version of the starting points represents a consensus on urgently needed initiatives to promote disaster resilience in home nursing care in Germany. The participatory development process should support commitment on the part of all stakeholders and thus promote effective implementation of disaster resilience initiatives in home nursing care.

Predictors for invasive home mechanical ventilation duration in bronchopulmonary dysplasia.

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. 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. 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). 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.

Transforming normative, ableist, and biomedical orientations to living well and quality of life in nursing: Reimagining what a ventilated body can do.

A goal of living as well as possible is central to practice and research with young adults living with home mechanical ventilation (HMV). Significant effort has been put into conceptualizing and measuring the quality of life (QOL) as a proxy for living well. Yet, dominant understandings of QOL have been influenced by normative, ableist, and biomedical discourses about what constitutes a good life that, when applied in practice and systems with those living with HMV, can contribute to exclusion and constrain opportunities to live well. Inquiry into what certain understandings of living well can do is critical to opening up possibilities to reimagine living well with HMV. This paper draws on findings from a critical narrative inquiry that explored the experiences of five young adults (ages 18-40 years) living with HMV. Data wereco-constructed virtually through an initial interview and photo-elicitation using participant-generated photographs. A critical narrative analysis of participants' stories made visible the ideological effects of ableist, biomedical, and individualist discourses and how the young adults reproduced and resisted these dominant discourses. Their stories further opened up possibilities for nurses and other healthcare providers to see living well and QOL differently.

Moving from Inpatient to Outpatient or Home Initiation of Non-Invasive Home Mechanical Ventilation.

Home mechanical ventilation (HMV) is an effective treatment for patients with chronic hypercapnic respiratory failure caused by restrictive or obstructive pulmonary disorders. Traditionally, HMV is initiated in the hospital, nowadays usually on a pulmonary ward. The success of HMV, and especially non-invasive home mechanical ventilation (NIV), has led to a steep and ongoing increase in the incidence and prevalence of HMV, in particular for patients with COPD or obesity hypoventilation syndrome. Consequently, the number of available hospital beds to accommodate these patients has become insufficient, and models of care that minimize the use of (acute) hospital beds need to be developed. At present, the practices for initiation of NIV vary widely, reflecting the limited research on which to base model-of-care decisions, local health system features, funding models, and historical practices. Hence, the opportunity to establish outpatient and home initiation may differ between countries, regions, and even HMV centres. In this narrative review, we will describe the evidence regarding the feasibility, effectiveness, safety, and cost savings of outpatient and home initiation of NIV. In addition, the benefits and challenges of both initiation strategies will be discussed. Finally, patient selection and execution of both approaches will be examined.

The experiences of patients with amyotrophic lateral sclerosis of their decision-making processes to invasive home mechanical ventilation-A qualitative study.

To explore and gain knowledge of the experiences and needs among patients with amyotrophic lateral sclerosis (ALS) of their decision-making processes whether to choose invasive home mechanical ventilation or not. A qualitative study. A phenomenological-hermeneutic approach influenced by Ricoeur's interpretation theory was used. Seven patients with ALS were interviewed. The Consolidated Criteria for Reporting Qualitative Research checklist was used for reporting. Three themes were evident in patients' accounts of the decision-making process: (1) being taken care of directly after receiving the diagnosis, (2) living in uncertainty about what the future would bring and (3) doubt causing patients with ALS to change their minds. Patients with ALS were burdened with everyday life challenging decision-making processes about future treatment and doubt caused patients to change their minds about their future treatment. It is necessary to support patients in their decision-making processes using shared decision-making. No Patient or Public Contribution.

Advanced Nursing Practice als Konzept für die Versorgung von Menschen mit außerklinischer Beatmung in Deutschland: Ergebnisse einer Bedarfs- und Curriculumanalyse

IntroductionOutpatient intensive care for people on home mechanical ventilation (HMV) is a complex area of care with high demands on the nurses specialised in this field. Internationally, academic qualification as an Advanced Practice Nurse (APN) has become established in these fields of specialised care. Despite the large number of further training opportunities, there is no university qualification for home mechanical ventilation in Germany. Based on a demand- and curriculum analysis, this study therefore defines the role of an APN for home mechanical ventilation (APN-HMV). MethodsThe study structure is based on the PEPPA framework (Participatory, Evidence-based and Patient-focused Process for the Development, Implementation and Evaluation of Advanced Practice Nursing). The need for a new model of care was determined with a qualitative secondary analysis based on interviews with health care professionals (n = 87) and a curriculum analysis (n = 5). Analyses were conducted using the Hamric model with a deductive-inductive approach. Subsequently, the main problems and objectives to improve the model of care were agreed upon in the research group, and the APN-HMV role was defined. ResultsThe qualitative secondary data analysis illustrates the need for APN core competencies, especially in the psychosocial area and in family-centred care. The curriculum analysis resulted in a total of 1,375 coded segments. The focus of the curricula was on the central competency “direct clinical practice” (1,116 coded segments) and thus on ventilatory and critical care measures. Based on the results, the profile of APN-HMV could be defined. ConclusionsThe introduction of an APN-HMV can usefully complement the skill and grade mix in outpatient intensive care and counteract care problems in this highly specialised area. The study provides a basis for the development of appropriate academic programmes or advanced training courses at universities.

Incidence and Mortality of Children Receiving Home Mechanical Ventilation.

The incidence, as well as the predictors of mortality, for children receiving home mechanical ventilation (HMV) using population-based data in Canada is a current knowledge gap. Our objectives were to describe HMV incidence and mortality rates, and associations of demographic and clinical variables on mortality. Using Ontario health and demographic administrative databases, we conducted a retrospective cohort study (April 1, 2003-March 31, 2017) of children aged 0 to 17 years receiving HMV via invasive mechanical ventilation and noninvasive ventilation. We identified children with complex chronic conditions. We used data from Census Canada to calculate incidence rates and Cox proportional hazards modeling to assess for predictors of mortality. We identified 906 children with a mean (SD) crude incidence rate of 2.4 (0.6) per 100 000 for pediatric HMV approvals that increased by 37% over the 14-year study period. Compared with children who were invasively ventilated, we found mortality was associated with noninvasive ventilation (adjusted hazard ratio [aHR], 1.9; 95% confidence interval [CI], 1.3-2.8). Mortality was highest in children from families in the lowest income quintile (aHR, 2.5; 95% CI, 1.5-4.0), those with neurologic impairment complex chronic conditions (aHR, 2.9; 95% CI, 1.4-6.4), those aged 11 to 17 years at HMV initiation (aHR, 1.5; 95% CI, 1.1-2.0), and those with higher health care costs in the 1 year before HMV initiation (aHR, 1.5; 95% CI, 1.3-1.7). The incidence of children receiving HMV increased substantially over the 14-year period. Demographic variables associated with increased mortality were identified, suggesting areas requiring greater attention for care providers.

Can addressing family education improve outcomes of patients under home invasive mechanical ventilation? A randomized controlled clinical trial

ABSTRACT The use of home mechanical ventilation is increasingly developing. The present study aimed to examine the effect of a family-centered training program on patients under home invasive mechanical ventilation. A total of 60 adult patients under invasive mechanical ventilation were selected and randomly allocated into two groups. The supportive home care program consisting of six training sessions using a teach-back technique and follow up training at home. The rate of hospital readmission and mortality in the intervention group was significantly lower than the control group(P = .02 and P = .03, respectively). Moreover, the home caregivers’ level of knowledge in the intervention group was significantly higher than that of the control group(P = 0/000). In addition, implementing the intervention effectively increased home caregivers’ ability of functional skills. Therefore, comprehensive preparation of the patient and family before discharge and coherent support and continuity of care after discharge with the effective presence of nurses.

Cardioprotective medication in Duchenne muscular dystrophy: a single-centre cohort study.

Duchenne muscular dystrophy (DMD) is a neuromuscular disorder characterised by progressive muscle wasting impacting mobility, ventilation and cardiac function. Associated neuromuscular cardiomyopathy remains a major cause of morbidity and mortality. We investigated the effects of cardioprotective medications [angiotensin-converting enzyme inhibitors (ACE-I), beta-blockers] on clinical outcomes in DMD patients. This was a retrospective cohort study (reference: 2021/12469) of DMD patients at a tertiary centre between 1993-2021 screening the electronic records for demographics, comorbidities, medication, disease specific features, echocardiography, hospitalisations, and ventilator use. A total of 68 patients were identified aged 27.4 (6.6) years, of which 52 were still alive. There was a difference in body mass index (BMI) between survivors and deceased patients [23.8 (5.9) vs. 19.9 (3.8) kg/m2, P=0.03]. Home mechanical ventilation (HMV) was required in 90% of patients, 85% had DMD associated cardiomyopathy. About 2/3 of all hospitalisations during the observation period were secondary to cardiopulmonary causes. The left ventricular ejection fraction (LVEF) at initial presentation was 44.8% (10.6%) and declined by 3.3% [95% confidence interval (CI): 0.4% to -7.0%] over the follow up period (P=0.002). A total of 61 patients were established on ACE-I for 75.9% (35.1%), and 62 were on beta-blockers for 73.6% (33.5%) of the follow up period. There was a significant LVEF decline in those taking ACE-I for limited periods compared to those permanently on ACE-I (P=0.002); a similar effect was recorded with beta-blockers (P=0.02). Long-term use of ACE-I and beta-blockers is associated with a reduced decline in LVEF in patients with DMD and may be protective of adverse cardiovascular ill health.

Going home: Clinician perspectives on decision-making in paediatric home mechanical ventilation.

Despite a recent increase in the use of ventilators in the home setting for children with chronic respiratory failure, there is currently no unified approach for clinical decision-making for children requiring long-term mechanical ventilation. The purpose of this study is to understand the clinician's perspective on decision-making around home ventilation for children, and how home-based care contributes to successful outcomes in this population. We recruited physicians and home ventilation nurses with at least 2 years' experience working in an Australian paediatric tertiary home ventilation service using professional networks and snowball sampling. Semi-structured interviews were conducted by two researchers between February 2019 and June 2020. Interviews were audio-recorded, transcribed, and analysed using inductive content analysis. Twenty-five individuals participated (17 physicians and 8 home ventilation nurses). Participants viewed themselves as impartial medical advocates in the decision-making process, believing the decision to initiate or cease ventilation belonged to the child's family. While participants held the child's quality of life as the cornerstone of decision-making, quality of life was subjective and family specific. These findings provide insight into how clinicians working with children with chronic respiratory insufficiency approach the decision to introduce home-based ventilation. By understanding their role, strategies can be developed to assist them, leading to better outcomes for patients and families. Further research is needed to compare the perspectives of clinicians with the experience of ventilator-assisted children and families in Australia.

Pulmonary care for ALS: Progress, gaps, and paths forward.

Adults with amyotrophic lateral sclerosis (ALS) have been using home mechanical ventilation for over 50 years. More recently, home respiratory care has evolved to include portable home ventilators, airway clearance devices, and physiological assessments with telemonitoring capability. National organizations currently offer incentives for providing a pulmonary care specialist within a multidisciplinary ALS clinic; however, several critical gaps exist between the available technology and employing a clinician with the necessary expertise. Lack of formal training and poor financial incentives have led to a paucity of both clinicians and active clinical research engaging in the home respiratory care of ALS. Criteria for noninvasive ventilation (NIV) initiation are controversial, and few guidelines exist on the ideal subsequent adjustments of NIV with evolving disease. Consequently, many patients with ALS tolerate NIV poorly and must face the harrowing decision of hospice vs tracheostomy. Advancement of respiratory care in ALS has been hindered by critical gaps in pulmonologist availability, training in chronic respiratory failure, financial support, clinical research, and clarity on ventilation management beyond initiation. Only a multifaceted approach will suffice for addressing the voids in ALS respiratory care, including various education initiatives, financial incentives, clinical research programs, and elevating the standard of respiratory care.