Receiving Home Mechanical Ventilation Research Articles

NATIONAL REGISTRY SYSTEM FOR HOME MECHANICAL VENTILATION SUPPORT IN CHILDREN: FIRST DATA FROM TURKIYE.

Advances in neonatal and pediatric intensive care have improved patient survival rates, emphasizing the need for respiratory support in cases of chronic respiratory failure, resulting in the establishment of the Turkish National Pediatric Patients Receiving Home Mechanical Ventilation (HMV) Support Registration System in 2023. This study aims to present the initial findings of the registry. In this cross-sectional study, epidemiological and demographic data was obtained from the registry and compared between invasive ventilation (IV) and non-invasive ventilation (NIV) groups. The study included 952 patients registered from 23 centers with a median (IQR) age of 6.0 (3.0-12.0) years. IV support was observed in 51.1% of patients (n= 486). There was no difference in sex between IV and NIV groups, but a significant difference in age, nutrition, mobility status and education were observed between the subgroups. The largest patient group had neuromuscular disease, with spinal muscular atrophy being the most common primary diagnosis (15.7%). Most of the caregivers (78.7% in the NIV group and 93.8% in the IV group) received formal training before the initiation of HMV. Turkey's first registry for pediatric HMV patients is introduced. This system helps understand and solve mobility and education issues for these patients in our country. Collaboration with relevant ministries is crucial. In addition, although most of the caregivers have received training before discharge, efforts are still needed to ensure that this rate is 100%. The long-term results will be presented in the future.

Proof of concept, feasibility, and acceptability of spiritual care assessment and intervention-pediatric with caregivers of children receiving home mechanical ventilation

Caregivers of children with medical complexity face daily tasks comparable to pediatric critical care nursing with multiple stressors. This may result in emotional and spiritual distress. Caregivers may also rely on their religion and spirituality to cope. Chaplains have the potential to support caregivers in this setting, beginning with spiritual assessment. This study’s purpose was to verify the feasibility and acceptability of the Spiritual Care Assessment and Intervention framework adapted for home-based chaplaincy with caregivers of children receiving home mechanical ventilation (SCAI-Peds). A quasi-experimental, proof-of-concept trial with N = 6 caregivers and two board certified chaplains was carried out. SCAI-Peds was acceptable and feasible to caregivers, delivered with high fidelity, and was also acceptable to the chaplains. Home-based intervention delivery may provide more room for reflection and reframing than acute care settings. The results warrant advancing SCAI-Peds beyond the pilot stage.

Impact of the COVID-19 Pandemic on Home Mechanical Ventilation in Germany: A Descriptive Observational Study

Introduction: Over the last decade, the number of patients receiving home mechanical ventilation (HMV) has increased significantly, which has led to a limited availability of specialist centres, not least due to the scarcity of healthcare professionals. This situation was exacerbated by the COVID-19 pandemic. It is therefore assumed that the repurposing of resources has led to an aggravated change in the healthcare structure in HMV. Methods: This descriptive observational study analysed the Operation and Procedure Classification Codes for patients receiving HMV from 2008 to 2022. The data were provided by the Federal Statistical Office of Germany. Data were additionally analysed with respect to geographical distribution and ventilation status. Results: A total of 737,770 datasets were analysed (mean age in 2020: 66.5 years). There was a steady increase in HMV initiations (+6%) and controls (+9%) per year before the pandemic (2008–2019). Patient admissions during the pandemic revealed a 28% decrease, with the largest decrease in invasive ventilation (IV) follow-up visits (2019: 3,053; 2020: 2,199; −39%), while the number of IV initiations remained stable. There was a 19% decrease in the number of non-IV initiations in 2020 (16,919 vs. 14,227) and a 32% decrease in the number of follow-ups (45,812 vs. 34,813) in comparison with 2019. Conclusion: The pandemic has led to a significant decline of inpatient admissions for patients receiving HMV. This decline was most pronounced in the first year of the pandemic. Control visits in particular did not reach the pre-pandemic level. This is an indication of the ongoing change in the healthcare landscape as a result of the pandemic.

Healthcare Use and Costs in Children Receiving Home Mechanical Ventilation in Ontario: A 14-Year Cohort Study.

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.

Burden, social support, and coping strategies in family caregivers of individuals receiving home mechanical ventilation: a cross-sectional study

BackgroundHome mechanical ventilation (HMV) is a treatment method for patients with chronic respiratory failure. HMV is a challenge for both patients and their caregivers. Some studies have shown a higher risk of depression, job loss, or lifestyle disturbance in family members caring for HMV patients. The purpose of the study was to measure caregiver burden, perceived social support, and coping strategies.MethodsIn the cross-sectional study, 58 caregivers (65.52% female) of HMV patients treated at five healthcare institutions were surveyed. The questionnaires including patient/caregiver demographic data, the type and duration of MV, the Caregiver Burden Scale (CBS), the Social Support Scale (SSS), and the Brief-COPE questionnaire were applied. For statistical analysis, the Mann‒Whitney U test, the Kruskal‒Wallis H test, Dunn’s test, and Spearman correlations were used.ResultsIn the CBS, a high level of burden was observed mainly in the isolation and disappointment subscales. The female caregivers achieved a higher score for general strain than did the male caregivers (p = 0.023). Differences in the distribution of the isolation (p = 0.028) and disappointment (p = 0.03) variables between the financial situation groups were observed. The older the patient, the lower the burden in the domains of isolation (p = 0.015) and disappointment (p = 0.005) was elicited. Invasive MV was associated with greater burdens of general strain (p = 0.005), isolation (p = 0.001), and disappointment (p = 0.001). A medium total SSS score was shown (74.5 ± 7.56). Caregivers used various coping strategies. The most common were planning, acceptance, and active coping. Self-blame and denial were positively related to several CBS subscales, whereas acceptance of difficult situations and positive reframing were related to lower scores.ConclusionsCaregivers most frequently experienced a medium level of burden. Female caregivers were characterized by higher level of burden. Invasive ventilation increased the burden. Respondents who assessed their financial situations as good, had lower burden in the selected subscales. Using some positive coping strategies may reduce the level of burden. Interventions to ensure that caregivers overcome these burdens should be undertaken.

Home mechancial ventilation: quality of life and the final stage of life

The evaluation of health-related quality of life (HRQL) has gained importance in recent years. Disease-specific questionnaires are available for respiratory insufficiency, which enable the assessment of HRQL. The Severe Respiratory Insufficiency (SRI) questionnaire, which was specially developed for patients with respiratory insufficiency, is ideal for quantifying the quality of life in patients receiving home mechanical ventilation (HMV). Studies using the SRI questionnaire demonstrated that the physical functioning of patients with chronic lung diseases of various etiologies is significantly impaired, but frequently without significant impairment of psychological well-being. Therefore, severity of the disease and HRQL do not necessarily correlate with each other.Both invasive and non-invasive mechanical ventilation can improve quality of life. Co-morbidity, and above all advanced age, have the highest negative predictive value with regard to in-hospital mortality and weaning failure. The number of patients older than 80 years who remain dependent on invasive HMV after prolonged weaning in Germany is increasing significantly. High dependence on invasive HMV is often associated with a loss of quality of life and autonomy. Thus, ethical issues of the continued treatment of ventilated patients at the end of life are discussed increasingly.After weaning failure, the indication for invasive HMV should be critically examined and should focus on potentially severely reduced quality of life and poor prognosis, as well as the patient's wishes. If previously agreed treatment goals can no longer be achieved during the course of invasive HMV, changing the therapy goals should be discussed within the clinical team, with the patient, their relatives and, if necessary, with legal representatives.In order to avoid overtreatment and unnecessary patient suffering during invasive HMV, advanced care planning should be started as early as possible and if necessary accompanied by palliative medical measures.

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.

Predictors of early hospital readmission in patients receiving home mechanical ventilation

BackgroundAlthough the proportion of patients with chronic respiratory failure requiring home mechanical ventilation (HMV) is increasing, hospital readmissions in these patients are also increasing. ObjectiveWe investigated the factors for early readmission in patients receiving HMV. MethodsWe retrospectively analyzed the data of adult patients readmitted to the hospital within a year who first received HMV and were discharged from the Asan Medical Center between March 2014 and February 2019. We compared the clinical characteristics at discharge before readmission between the early (readmission within 30 days) and late readmission groups (readmission between day 31 and 1 year) and investigated the clinical characteristics and outcomes at readmission. ResultsOf the 116 patients identified, 36.2% had been readmitted early. The patients who received invasive HMV had a higher rate of early readmission than those who received non-invasive HMV. Pneumonia was the most common reason of readmission in the two groups. The rate of aspiration was significantly higher in the early readmission group (28.6% vs. 8.1%; P = .003). In multivariate logistic regression analysis, nasogastric tube feeding, sequelae of pneumonia or acute respiratory distress syndrome, and central nervous system disorders as causes for HMV were significantly associated with early readmission. ConclusionFeeding methods and causes for HMV were associated with early readmission. Educating caregivers on respiratory care (suction and feeding methods) is important for preventing early readmission.

Long-Term Mortality in Critically Ill Tracheostomized Patients Based on Home Mechanical Ventilation at Discharge.

Data regarding the long-term outcomes for tracheostomized patients receiving home mechanical ventilation (HMV) are limited. We aimed to determine the 1-year mortality rate for critically ill tracheostomized patients with and without HMV. Data of tracheostomized patients between 1 January 2015 and 31 December 2019 were analyzed. A Kaplan-Meier analysis was performed to assess the survival curve of the patients. Among the 124 tracheostomized patients, 102 (82.3%) were weaned from mechanical ventilation (MV), and 22 (17.7%) required HMV at discharge. The overall 1-year mortality rate was 47.6%, and HMV group had a significantly higher 1-year mortality rate than those weaned from MV (41.2% vs. 77.3%, p = 0.002). In the Cox proportional hazards regression, BMI (HR 0.913 [95% CI 0.850–0.980], p = 0.012), Sequential Organ Failure Assessment (SOFA) score (HR 1.114 [95% CI 1.040–1.193], p = 0.002), transfer to a nursing facility (HR 5.055 [95% CI 1.558–16.400], p = 0.007), and HMV at discharge (HR 1.930 [95% CI 1.082–3.444], p = 0.026) were significantly associated with 1-year mortality. Critically ill tracheostomized patients with HMV at discharge had a significantly higher 1-year mortality rate than those weaned from MV. Low BMI, high SOFA score, transfer to a nursing facility, and HMV at discharge were significantly associated with 1-year mortality.

Validation of the Arabic Severe Respiratory Insufficiency Questionnaire

Background/objectivesAssessment of Health-Related Quality of Life (HRQL) in patients with chronic respiratory insufficiency requiring Home Mechanical Ventilation (HMV) requires a valid measurement tool. The Severe Respiratory Insufficiency (SRI) questionnaire, originally developed in German, has been translated into different languages and tested in different contexts, but has so far not been in use in Arabic-speaking populations. The objective of this study is to validate the Arabic version of the SRI questionnaire in a sample of Arabic-speaking patients from Lebanon.MethodsFollowing forward/backward translations, the finalized Arabic version was administered to 149 patients (53 males–96 females, age 69.80 ± 10 years) receiving HMV. Patients were recruited from outpatient clinics and visited at home. The Arabic SRI and the 36-Item Short-Form Health Survey (SF-36) were administered, in addition to questions on sociodemographics and medical history. Exploratory Factor Analysis (EFA) was used to explore dimensionality; internal consistency reliability of the unidimensional scale and its subscales was assessed using Cronbach’s alpha. External nomological validity was examined by assessing the correlation between the SRI and SF-36 scores.ResultsThe 49-item Arabic SRI scale showed a high internal consistency reliability (Cronbach alpha for the total scale was 0.897 and ranged between 0.73 and 0.87 for all subscales). Correlations between the SF-36-Mental Health Component MHC and SF-36-Physical Health Component with SRI-Summary Scale were 0.57 and 0.66, respectively, with higher correlations observed between the SF-36 and specific sub-scales such as the Physical Functioning and the Social Functioning subscales [r = 0.81 and r = 0.74 (P < 0.01), respectively].Conclusion and recommendationsThe Arabic SRI is a reliable and valid tool for assessing HRQL in patients with chronic respiratory insufficiency receiving home mechanical ventilation.

Practical aspects of nursing care provided to patients diagnosed with amyotrophic lateral sclerosis receiving home mechanical ventilation

The article presents the practical aspects of home care provided to patients diagnosed with amyotrophic lateral sclerosis (ALS) receiving mechanical ventilation. It discusses issues related to qualifying patients diagnosed with ALS for mechanical ventilation, patients’ palliative care at home and education of caregivers. The most important nursing problems facing caregivers and recommended approaches are discussed. Attention is drawn to the role of nurses who provide palliative care to patients staying at home, particularly to their important role in educating patients’ families.

Validation of the Hungarian version of the SRI Questionnaire

BackgroundHome mechanical ventilation is a reliable treatment for patients suffering from chronic respiratory failure, improving survival and quality of life. Prevalence has been increasing worldwide as a result of evolving technical possibilities, telemedicine and improving national guidelines. Projects to establish a national guideline and registry for patients treated with home mechanical ventilation are currently under way in Hungary and our aim was to validate a quality of life questionnaire suited for evaluation and follow up in this specific patient group. The Severe Respiratory Insufficiency Questionnaire (SRI) is a quality of life tool designed to evaluate patients receiving home mechanical ventilation and has been validated both in patient groups receiving invasive and noninvasive ventilation.MethodsThe Hungarian version of the SRI was created using the translation-backtranslation method, which was then tested for validity, viability and reliability in a cohort involving patients from three centers, receiving long-term home mechanical ventilation for chronic respiratory failure through an invasive or noninvasive interface. Patient data was collected (demographic data, lung function test, arterial blood gas, ventilation settings) and quality of life was measured with the previously validated SF-36 and newly created Hungarian SRI Questionnaires at two time points.ResultsOne hundred four patients receiving home mechanical ventilation were enrolled. The time to complete the SRI Questionnaire was 8.6 (±3.1) minutes, 69.2% questionnaires were self-administered. Exploratory factor analysis explained 73.8% of the variance of the questionnaire, but resulted in 13 scales. We found correlations between the SRI subscale scores to corresponding scales of the previously validated general quality of life survey SF-36. The Cronbach alpha coefficient was 0.928 for the Summary Scale of the SRI Questionnaire, proving high internal consistency. Reproducibility was high for most scales, resulting in a high overall correlation for the summary score (0.877, p < 0.001).ConclusionsThe Hungarian version of the SRI Questionnaire is a viable, valid, reliable and reproduceable quality of life tool applicable for patients treated with home mechanical ventilation.

Siblings’ Lived Experiences of Having a Brother or Sister With Home Mechanical Ventilation: A Phenomenological Hermeneutical Study

Over the past few decades, there has been an increase in the number of children receiving home mechanical ventilation (HMV), and in many ways, families have taken responsibility for the required advanced homecare, which has placed considerable time demands on the family unit. Little is known about the life situation of the siblings of HMV-assisted children; their own voices and an insider perspective are missing. The aim of this study was to illuminate the everyday life experiences of siblings of HMV-assisted children. Data were obtained via interviews with 10 siblings with a median age of 9 years. Data were analyzed using a phenomenological hermeneutical method inspired by the French philosopher Ricoeur. Four themes emerged, all of which suggest that a complex and profound intertwined sibling bond develops that links the past, present, and future. The findings of this study provide valuable information from an insider's perspective about the meaning of having an HMV-assisted sibling. Family-focused care with particular attention and support for siblings of HMV-assisted children can encourage the development of internal strengths, self-confidence, and resilience.

Patterns of use, survival and prognostic factors in patients receiving home mechanical ventilation in Western Australia: A single centre historical cohort study.

Home mechanical ventilation (HMV) is used in a wide range of disorders associated with chronic hypoventilation. We describe the patterns of use, survival and predictors of death in Western Australia. We identified 240 consecutive patients (60% male; mean age 58 years and body mass index 31 kg m−2) referred for HMV between 2005 and 2010. The patients were grouped into four categories: motor neurone disorders (MND; 39%), pulmonary disease (PULM; 25%, mainly chronic obstructive pulmonary disease), non-MND neuromuscular and chest wall disorders (NMCW; 21%) and the obesity hypoventilation syndrome (OHS; 15%). On average, the patients had moderate ventilatory impairment (forced vital capacity: 51%predicted), sleep apnoea (apnoea-hypopnea index: 25 events h−1), sleep-related hypoventilation (transcutaneous carbon dioxide rise of 20 mmHg) and daytime hypercarbia (PCO2: 54 mmHg). Median durations of survival from HMV initiation were 1.0, 4.2, 9.9 and >11.5 years for MND, PULM, NMCW and OHS, respectively. Independent predictors of death varied between primary indications for HMV; the predictors included (a) age in all groups except for MND (hazard ratios (HRs) 1.03–1.10); (b) cardiovascular disease (HR: 2.35, 95% confidence interval (CI): 1.08–5.10) in MND; (c) obesity (HR: 0.28, 95% CI: 0.13–0.62) and oxygen therapy (HR: 0.33, 95% CI: 0.14–0.79) in PULM; and (d) forced expiratory volume in 1 s (%predicted; HR: 0.93, 95% CI: 0.88–1.00) in OHS.

'I'm almost never sick': Everyday life experiences of children and young people with home mechanical ventilation.

Developments in medical technology and treatment have increased the survival rates of children with serious illnesses or injuries, including those receiving home mechanical ventilation, which is a small but growing group. The aim of this study was to explore everyday life experiences of children and young people living with home mechanical ventilation (HMV). Data were obtained through interviews with nine participants. The interviews were supported by photovoice methodology: photographs taken by the participants before or during the interviews were used to facilitate conversation. Interview data were analyzed using qualitative content analysis. The findings revealed that everyday life on a ventilator can be described as including power but simultaneously as characterized by vulnerability to the outside world, comparable to balancing on a tightrope. Various types of technology, both information and communication technology (ICT) and vital medical technology, enabled the participants to engage with the world around them. This study contributes knowledge about the experiences of children and young people with HMV, who depict their lives as good and valuable. The study also underscores, when designing plans and home support, it is necessary to take a sensible approach to personal experiences of what a good life is and what resources are needed to attain and maintain health.

Impact of home mechanical ventilation on sleep quality.

The number of patients receiving home mechanical ventilation (HMV) has dramatically increased in recent years. Although physiological parameters, health-related quality of life and long-term outcomes frequently serve as primary outcomes, only a few studies have primarily addressed sleep quality in patients undergoing HMV. Therefore, this review article summarizes the current knowledge on sleep quality in patients receiving HMV. HMV can be performed noninvasively via face masks or invasively via tracheal cannulas. Studies in patients receiving invasive HMV therapy are clearly lacking. Most studies in this field have focused on invasively ventilated patients in the ICU, but the findings are not necessarily applicable to patients undergoing invasive HMV. On the other hand, there are several trials showing that noninvasive ventilation (NIV) has the potential to improve sleep quality in patients with severe sleep disturbances associated with chronic hypercapnic respiratory failure. To this end, both subjectively and objectively assessed sleep qualities by polysomnography are reported to improve after long-term NIV is initiated. Although HMV has the potential to improve sleep quality in patients with chronic hypercapnic respiratory failure, it can also have a negative impact on sleep quality, particularly in cases of patient-ventilator asynchrony or leakage. Therefore, both subjective and objective polysomnographic assessments of sleep quality should become an integral part of managing patients who receive HMV therapy.

Music therapy for patients with amyotrophic lateral sclerosis receiving home mechanical ventilation

Music therapy for patients with amyotrophic lateral sclerosis receiving home mechanical ventilation

Home mechanical Ventilation - Concepts and Therapy Recommendations

The prognosis of patients receiving home mechanical ventilation is very heterogeneous and depends on the underlying disease, the degree of respiratory dependency and the comorbidities. Due to the severe chronic diseases, the initiation of a long-term NIV must be done during an inpatient treatment. Two recently published randomized controlled trials using more aggressive forms of NPPV targeted at normalizing hypercapnic PaCO2 values, showed improved long term survival also in patients with an underlying diagnosis of COPD. Consequently, the number of patients receiving home mechanical ventilation has dramatically increased in recent years and more and more outpatient settings has been established without scientific evidence. Nevertheless, beside reliable care structures, ethical aspects and health related quality of life are of great importance in the context of home mechanical ventilation.

Validation of the Portuguese Severe Respiratory Insufficiency Questionnaire for home mechanically ventilated patients

The aim of this study was to develop and validate the professional translation and cultural adaptation of the Portuguese Severe Respiratory Insufficiency (SRI) Questionnaire.The sample was composed of 93 patients (50 male patients, 53.8%) with a mean age of 66.3 years. The most frequent diagnostic groups were chronic obstructive pulmonary disease, obesity hypoventilation syndrome and restrictive chest wall disorders.The patients were asked to fill in both the SRI and SF-36 questionnaires. Factor analysis of the SRI questionnaire was performed leading to an explained variance of 73%, and resulted in 13 components. When analyzing the reliability, we obtained values for Cronbach's alpha above 0.70 for most subscales with the reliability of the summary scale being even higher (0.84).This professional translation and cultural adaptation of the Portuguese SRI Questionnaire has good psychometric properties which are similar, not only to the original, but also to other translations. These characteristics make this questionnaire applicable to the Portuguese population receiving home mechanical ventilation for severe respiratory insufficiency.

A new system for continuous and remote monitoring of patients receiving home mechanical ventilation.

Home mechanical ventilation is the treatment of patients with respiratory failure or insufficiency by means of a mechanical ventilator at a patient's home. In order to allow remote patient monitoring, several tele-monitoring systems have been introduced in the last few years. However, most of them usually do not allow real-time services, as they have their own proprietary communication protocol implemented and some ventilation parameters are not always measured. Moreover, they monitor only some breaths during the whole day, despite the fact that a patient's respiratory state may change continuously during the day. In order to reduce the above drawbacks, this work reports the development of a novel remote monitoring system for long-term, home-based ventilation therapy; the proposed system allows for continuous monitoring of the main physical quantities involved during home-care ventilation (e.g., differential pressure, volume, and air flow rate) and is developed in order to allow observations of different remote therapy units located in different places of a city, region, or country. The developed remote patient monitoring system is able to detect various clinical events (e.g., events of tube disconnection and sleep apnea events) and has been successfully tested by means of experimental tests carried out with pulmonary ventilators typically used to support sick patients.