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Background and Objective: In the current study, we undertook a more detailed exploration of the reasons why patients undergoing HMV were screened out of a recently published study in order to better understand how applicable home initiation of HMV is under real life conditions., Methods: All referred patients who had an indication for starting HMV were screened to participate in the Homerun study. In this trial 512 patients were screened out of the study. Those patients not enrolled in the trial were divided into the following 3 groups: (1) those not fulfilling the inclusion criteria; 2) those meeting the exclusion criteria and 3) those excluded on the basis of medical or organisation reasons. Each group was then further divided into those who would likely have been suitable for initiation of HMV at home in real world practice and those who were unsuitable., Results: Based on inclusion criteria (group 1) 116 patients could not start HMV in real life, while this was 245 patients in the study. Based on the exclusion criteria (group 2) 11 patients could not start in real life while this was 79 in the study. One hundred and eighty-eight could not be enrolled in the study due to medical and organisational reasons ( group 3), while in real life this was only 95., Conclusion: This study indicates that more than 55% of patients who did not participate in the Homerun study could have started HMV at home in real life., (© 2022. The Author(s).)

Introduction: Home mechanical ventilation (HMV) in the Netherlands is normally initiated in hospital, but this is expensive and often a burden for the patient. In this randomised controlled study we investigated whether initiation of HMV at home in patients with chronic respiratory failure is non-inferior to an in hospital based setting., Methods: Seventy-seven patients were included, of which 38 patients started HMV at home. All patients were diagnosed with chronic respiratory failure due to a neuromuscular or thoracic cage disease. Primary outcome was the arterial carbon dioxide (PaCO2) while quality of life and costs were secondary outcomes. Telemonitoring was used in the home group to provide therapeutic information, for example; transcutaneous carbon dioxide, oxygen saturation and ventilator information, to the caregivers. Follow-up was six months., Results: PaCO2, improved by 0.72 (SE ± 0.16) kPa in the hospital group and by 0.91 (±0.20) in the home group, both improvements being significant and the latter clearly not inferior. There were also significant improvements in quality of life in both groups, again not being inferior with home treatment., Conclusion: This study is the first to show that initiation of HMV at home in a selective group of patients with chronic respiratory failure is as effective for gas exchange and quality of life as hospital initiation. In addition we found that it is safe, technically feasible and that more than € 3000 per patient can be saved compared to our standard care., (Copyright © 2014 Elsevier Ltd. All rights reserved.)

Background: Home mechanical ventilation is usually started in hospital as arterial blood gas sampling is deemed necessary to monitor CO(2) and O(2) adequately during institution of ventilatory support. A non-invasive device to reliably measure CO(2) transcutaneously would alleviate the need for high care settings for measurement and open the possibility for home registration., Objectives: In this study we investigated whether the TOSCA® transcutaneous CO(2) (PtcCO(2)) measurements, performed continuously during the night, reliably reflect arterial CO(2) (PaCO(2)) measurements in adults with chronic respiratory failure., Methods: Paired measurements were taken in 15 patients hospitalised to evaluate their blood gas exchange. Outcomes were compared 30 min, 2, 4, 6 and 8 h after attaching the sensor to the earlobe. A maximum difference of 1.0 kPa and 95% limits of agreement (LOA) of 1 kPa between CO(2) pressure measurements, following the analysis by Bland and Altman, were determined as acceptable., Results: Mean PtcCO(2) was 0.4 kPa higher (LOA -0.48 to 1.27 kPa) than mean PaCO(2) after 30 min. These figures were 0.6 kPa higher (LOA -0.60 to 1.80 kPa) after 4 h, with a maximum of 0.72 kPa (LOA 0.35 to 1.79 kPa) after 8 h. The corresponding values for changes in PtcCO(2) versus PaCO(2) were not significant (ANOVA)., Conclusions: PtcCO(2) measurement, using TOSCA, is a valid method showing an acceptable agreement with PaCO(2) during 8 h of continuous measurement. Therefore, this device can be used to monitor CO(2) adequately during chronic ventilatory support., (Copyright © 2011 S. Karger AG, Basel.)

The Maugeri Respiratory Failure (MRF-28) and Severe Respiratory Insufficiency (SRI) questionnaires were recently developed to assess health-related quality of life (HRQoL) in patients with chronic respiratory failure, although not exclusively in chronic obstructive pulmonary disease (COPD) patients. The aim of the present study was to investigate whether the MRF-28 and SRI are reliable and valid HRQoL questionnaires in COPD patients with chronic hypercapnic respiratory failure (CHRF). In total, 72 COPD patients with CHRF underwent pulmonary function and exercise testing, and completed the MRF-28, the SRI, the Chronic Respiratory Questionnaire (CRQ), the Hospital Anxiety and Depression Scale, the Groningen Activity and Restriction Scale and two dyspnoea indexes. Physical domain scores of the questionnaires correlated with exercise tolerance, dyspnoea and daily activities, while psychological domains correlated strongly with anxiety and depression. Anxiety scores accounted for 51 and 56% of the total explained variance in total CRQ and SRI scores, respectively. The emphasis of the MRF-28 was restrictions in activities of daily living (52% of total variance). In conclusion, the present study showed that the Maugeri Respiratory Failure and Severe Respiratory Insufficiency questionnaires were reliable and valid questionnaires in chronic obstructive pulmonary disease patients with chronic hypercapnic respiratory failure. While the emphasis in the Maugeri Respiratory Failure questionnaire is on activities of daily living, the Severe Respiratory Insufficiency questionnaire, like the Chronic Respiratory Questionnaire, is more related to anxiety and depression.

Three patients with myotonic dystrophy (MD) developed respiratory failure. The first was a 55-year-old man with MD who had been admitted elsewhere with pneumonia and respiratory failure. After discharge he was re-admitted with respiratory failure due to respiratory pump failure. Ultimately, he was given a tracheostomy and was ventilated during the night. The second patient was a 38-year-old man who was admitted to the intensive care unit when he could not be weaned off the ventilator following cholecystectomy for symptomatic gall stones. It appeared that he had partial respiratory failure due to MD and overweight. Ultimately he was able to be weaned during the day with nightly non-invasive ventilation. The third patient was a 55-year-old woman who was admitted with recurrent pneumonia and respiratory failure. She appeared to have chronic respiratory failure due to MD. She was ventilated at night via a tracheostomy. All three patients reported a gradual decline in physical and mental performance in the years preceding this acute episode. All three experienced a remarkable recovery of performance after the institution of mechanical ventilatory support. Respiratory failure that develops over a number of years can be easily missed in aging patients with slowly progressing neuromuscular disease. Timely recognition may lead to improved survival and quality of life by the application of non-invasive ventilatory support.

Objective: To find out which patients with Duchenne muscular dystrophy are eligible for starting home mechanical ventilation and what the survival rate is., Design: Retrospective., Method: In 48 patients with Duchenne muscular dystrophy who were treated with home ventilation from 1987, the results were assessed in the follow-up visit in February 2005. Initially, ventilation was only given through a tracheotomy (TPPV), but after starting up a multidisciplinary neuromuscular consultation, non-invasive ventilation (NIPPV) was offered in an earlier stage of the disease. The following data were derived from the outpatient medical record: indication for ventilation, vital capacity (VC), arterial blood gas values, duration of ventilation up to February 2005, survival and causes of death., Results: 15 patients died. The 5-year survival rate was 75% from the start of mechanical ventilation and 67% (18/27) of the patients were still living at home at the time of the follow-up visit. The most important causes of death were cardiomyopathy (5/15) and tracheal bleeding (3/15). The group of patients who started ventilation before 1995 (n = 17) had a significantly smaller VC than the group (n = 31) who started after the neuromuscular consultation was set up. The PaCO2 during daytime was significantly higher in the group that started ventilation before 1995 compared to the group that started later., Conclusion: Home mechanical ventilation can be implemented effectively in patients with Duchenne dystrophy, with a 5-year survival of 75%.

Background: Long-term non-invasive positive pressure ventilation (NIPPV) might improve the outcomes of pulmonary rehabilitation in patients with chronic obstructive pulmonary disease (COPD) with chronic respiratory failure. A study was undertaken to investigate whether nocturnal NIPPV in addition to pulmonary rehabilitation improves health-related quality of life, functional status and gas exchange compared with pulmonary rehabilitation alone in patients with COPD with chronic hypercapnic respiratory failure. Methods: 72 patients with COPD were randomly assigned to nocturnal NIPPV in addition to rehabilitation (n = 37) or rehabilitation alone (n = 35). Outcome measures were assessed before and after the 3-month intervention period. Results: The Chronic Respiratory Questionnaire total score improved 15.1 points with NIPPV + rehabilitation compared with 8.7 points with rehabilitation alone. The difference of 7.5 points was not significant (p = 0.08). However, compared with rehabilitation alone, the difference in the fatigue domain was greater with NIPPV + rehabilitation (mean difference 3.3 points, p<0.01), as was the improvement in the Maugeri Respiratory Failure questionnaire total score (mean difference -10%, p<0.03) and its cognition domain (mean difference -22%, p<0.01). Furthermore, the addition of NIPPV improved daytime arterial carbon dioxide pressure (mean difference -0.3 kPa; p<0.01) and daily step count (mean difference 1269 steps/day, p<0.01). This was accompanied by an increased daytime minute ventilation (mean difference 1.4 I; p<0.001). Conclusion: Non-invasive ventilation augments the benefits of pulmonary rehabilitation in patients with COPD with chronic hypercapnic respiratory failure as it improves several measures of health-related quality of life, functional status and gas exchange. [ABSTRACT FROM AUTHOR]

Cystinosis is a rare metabolic disorder characterized by lysosomal cystine accumulation leading to multi-organ damage, with kidneys being clinically first affected. Longer survival of cystinosis patients due to successful renal replacement therapy, revealed previously unknown extra-renal symptoms of cystinosis, generally appearing after the first decade. Respiratory insufficiency caused by overall respiratory muscle myopathy is a severely invalidating and sometimes a life-threatening complication of cystinosis. We report a successful treatment of hypoventilation, due to diaphragm myopathy in a cystinosis patient, by nocturnal non-invasive positive pressure ventilation (NIPPV). After initiation of NIPPV the clinical condition of the patient improved and blood-gasses normalized, indicating that this treatmentmodality should be considered in cystinosis patients with severe respiratory insufficiency. [ABSTRACT FROM AUTHOR]