Patients 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.

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.

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.

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 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.

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.

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.

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.

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.

Barriers Against Providing Home Health Care Delivery to Ventilator-Dependent Patients: A Qualitative Content Analysis

Background: Home health care (HHC) as a part of the health care delivery continuum has continued to be developed over the past decade. The number of patients receiving home mechanical ventilation (HMV) is increasing. The continuity of care from the hospital to the home is very important. However, these patients have various special care needs, and different conditions may affect the quality of care delivered to them. Objectives: This study was conducted to assess the barriers against service provided to the patients receiving HMV in the distinctive cultural, financial, spiritual, and emotional context of Iran. Methods: The present study was performed using the method of qualitative content analysis with purposive sampling. In general, 18 participants, including seven nurses, three physicians, and two physiotherapists working in homes, and six family members who each had a patient receiving mechanical ventilation at home, were interviewed during 2013 to 2014. Semi-structured interviews were conducted in quiet places offered by the study participants. Results: The barriers against home care for patients depending upon mechanical ventilation in this study are classified into three main categories, including policy-based barriers, agency-based barriers, and family-based barriers. The main policy-based barriers were the legal framework restrictions, insurance limitations, and an inefficient social support network. Lack of a professional team, lack of an independent home care organization, and problems related to physician visits were considered as agency-based barriers. Family-based barriers included fatigue and distress of the families and financial drainage. Conclusions: It seems that providing quality HHC is one of themost important challenges faced by our country’s health system, but the relevant infrastructure and policies have not been adequately considered. The results of this study could be used for improving the current challenges in delivering quality care to ventilator-dependent patients at home

Home Mechanical Ventilation through Mask: Monitoring Leakage and Nocturnal Oxygenation at Home

Background: Leakage is common in patients receiving home mechanical ventilation (HMV) via a face mask. Although pressure ventilators have partial compensatory capacity, excessive leakage can compromise the effectiveness of treatment. Home ventilators are equipped with built-in software which provides information on leakage. However, the values of leakage and their effects in routine clinical practice are currently little known. Objective: To measure leakage in stable patients on nocturnal HMV and its impact on treatment effectiveness. Methods: Consecutive outpatients on HMV were recruited. Nocturnal pulse oximetry was performed at home and leakage was measured using the ventilator’s built-in software. We measured: mean Sp<smlcap>O</smlcap>₂, percentage of time with Sp<smlcap>O</smlcap>₂ <90% (T90), mean leakage (meanL), maximum leakage (maxL), and minimum leakage (minL) during the ventilation session. We estimated ventilator capacity to compensate for leakage according to inspiratory positive airway pressure and divided the patients into two groups: those with leak compensation and those without. Results: The study included 41 patients [mean age, 64 years (SD 11.9); 23 (56%) women]. Nocturnal pulse oximetry showed an Sp<smlcap>O</smlcap>₂ of 94% (±2.9) and a T90 of 10% (±21.7). Leakage (in l/min) was: meanL, 32.2 (±15.3); maxL, 64.8 (±28.5), and minL, 18.8 (±10.6). Seven cases (17%) had leakage greater than the ventilator compensatory capacity, but no significant difference in Sp<smlcap>O</smlcap>₂ or T90 was observed between patients with or without leak compensation. Conclusions: A wide variation between maxL and minL was observed in our series; 17% of cases had higher leakage values than the compensatory capacity of the ventilator, but this did not affect nocturnal oxygenation.

Long-Term Home Mechanical Ventilation in the United States

Patients requiring prolonged mechanical ventilation are rapidly increasing in number. Improved ICU care has resulted in many patients surviving acute respiratory failure to require prolonged mechanical ventilation during convalescence. Also, mechanical ventilation is increasingly used as a therapeutic option for patients with symptomatic chronic hypoventilation, with an increased effort to predict nocturnal hypoventilation to initiate ventilation earlier. There are continued efforts by ventilator manufacturers to improve home ventilators. These factors point to a likely increase in the number of patients receiving home mechanical ventilation in the United States. Unfortunately, there are no comprehensive databases or national registry of home ventilator patients-therefore the number of home ventilator patients is unknown. There are real challenges to providing mechanical ventilation in the home, which include caregiver training, adequacy of respiratory care, and reimbursement.

Nichtinvasive und invasive Beatmung als Therapie der chronischen respiratorischen Insuffizienz

The field of mechanical ventilation is highly important in pulmonary medicine. The German Medical Association of Pneumology and Ventilatory Support ["Deutsche Gesellschaft für Pneumologie und Beatmungsmedizin e. V. (DGP)"] therefore has formulated these guidelines for home mechanical non-invasive and invasive ventilation. Non-invasive home mechanical ventilation can be administered using various facial masks; invasive home mechanical ventilation is performed via a tracheostomy. Home mechanical ventilation is widely and increasingly accepted as a treatment option for chronic ventilatory failure which most often occurs in COPD, restrictive lung diseases, obesity-hypoventilation syndrome and neuromuscular disorders. Essential for the initiation of home mechanical ventilation are the presence of symptoms of ventilatory failure and the detection of hypoventilation, most importantly hypercapnia. These guidelines comprise general indication criteria along with disease-specific criteria summarised by treatment algorithms. In addition, the management of bronchial secretions and care of paediatric patients are addressed. Home mechanical ventilation must be organised around a specialised respiratory care centre with expertise in patient selection, the initiation and the control of home mechanical ventilation. In this regard, the guidelines provide detailed information about technical requirements (equipment), control and settings of mechanical ventilation as well as organisation of patient care. A key requirement for home mechanical ventilation is the qualification of specialised home-care services, which is addressed in detail. Independent living and the quality of respiratory care are of highest priority in patients receiving home mechanical ventilation, since home mechanical ventilation can interfere with the integrity of a patient and often marks a life-sustaining therapy. Home mechanical ventilation has been shown to improve health-related quality of life of patients with chronic ventilatory failure. Long-term survival is improved in most patient groups, even though the long-term prognosis is often severely limited. For this reason, ethical issues regarding patient education, communication with ventilated patients at the end of life, living will, testament and medical care during the dying process are discussed.

Transculturally adapted Spanish SRI questionnaire for home mechanically ventilated patients was viable, valid, and reliable

Objective To validate the Spanish Severe Respiratory Insufficiency (SRI) questionnaire, the first health-related quality-of-life questionnaire specific for patients receiving home mechanical ventilation (HMV). Study Design and Setting This multicenter prospective study enrolled 115 patients (53 males, age 62 ± 13 years) receiving HMV, recruited from five hospitals. Patients were scheduled for two visits during which sociodemographic and clinical data were recorded, and both the Spanish SRI and the SF-36 questionnaires were administered. Viability was assessed by recording timing and the response rate in the questionnaire. Reliability was assessed using intraclass correlation coefficient (ICC) and Cronbach alpha coefficient. Validity was studied by factor analysis, by a correlation test between the SRI and SF-36 questionnaires, and by establishing several simple, plausible, ad hoc hypotheses. Results The SRI was administered in 10 ± 5 minutes with ≥96% responses for most items. Cronbach alpha coefficient was >0.7 for all scales except social relationships. ICCs were above 0.8 for all scales. Criterion validity obtained high correlations with SF-36, especially in psychosocial well-being and physical functioning scales. Factor analysis explained 60% of the variability. All ad hoc hypotheses were fulfilled. Conclusion The Spanish version of the SRI questionnaire has good psychometric properties, similar to those of the original questionnaire.

Factors related to quality of life in patients receiving home mechanical ventilation

The objective of this study was to evaluate factors associated with health-related quality of life (HRQOL) among patients receiving home mechanical ventilation (HMV). Observational, cross-sectional study. Patients receiving HMV were recruited from hospital outpatients facilities at five participating centers; a single follow-up visit was scheduled. The Spanish version of the Severe Respiratory Insufficiency (SRI) Questionnaire was used and the following variables were collected: socio-demographic status, previous medical history (Charlson-Age Comorbidity Index), current symptoms, administration of questionnaires, pulmonary function tests (PFT), current ventilatory support, and oxygen therapy. One hundred and fifteen patients (57 males and 58 females, mean age 62+/-13 years) were investigated. The reasons for HMV were as follows: thoracic cage abnormalities (33 patients), obesity hypoventilation syndrome (37 patients), neuromuscular disorders (18 patients), sequelae of tuberculosis (12 patients), and chronic obstructive pulmonary disease (15 patients). In a bivariate approach, dyspnea, the number of hospitalizations, and the number of emergency room admissions in last year were the main predictors of each HRQOL dimension. Multivariate analysis showed that dyspnea, FEV(1)/FVC, and the number of hospitalizations in the previous year were independently associated with HRQOL. HRQOL of patients receiving HMV is influenced by many factors, especially by dyspnea and the number of admissions. An obstructive pattern in the PFT also influences HRQOL. These findings may have therapeutic implications.

The Severe Respiratory Insufficiency (SRI) Questionnaire A specific measure of health-related quality of life in patients receiving home mechanical ventilation

Background and Objective: The objective of this study was to develop a specific instrument for measuring health-related quality of life (HRQL) in patients receiving home mechanical ventilation (HMV).Methods: The Severe Respiratory Insufficiency (SRI) Questionnaire was developed and tested for its psychometric properties following a multicentric clinical trial including 226 patients receiving HMV (mean age 57.3±14.0 years).Results: Forty-nine items passed the selection process and were allocated to seven subscales: Respiratory Complaints, Physical Functioning, Attendant Symptoms and Sleep, Social Relationships, Anxiety, Psychologic Well-Being, and Social Functioning. Cronbach's α was >0.7 in all subscales and >0.8 in four subscales indicating high internal consistency reliability. Construct validity was confirmed by factor analysis, indicating one summary scale that accounts for 59.8% of the variance. Concurrent validity was confirmed by correlating subscales of the SRI and the SF-36 (0.21<r<0.79). Item-scale correlations revealed a high item discriminant validity. In addition, different diagnostic groups could be discriminated by the SRI. Here, the overall best HRQL was measured in the following order: patients with kyphoscoliosis, miscellaneous disorders, neuromuscular diseases, post-tuberculosis, and chronic obstructive pulmonary disease (P<.05).Conclusion: The SRI is a new multidimensional instrument with high psychometric properties designed to measure specific HRQL in patients with SRI receiving HMV.