Invasive Home Mechanical Ventilation: Living Conditions and Health-Related Quality of Life

Abstract

Background: The number of patients with invasive home mechanical ventilation (HMV) following unsuccessful weaning is steadily increasing, but little is known about the living conditions and health-related quality of life (HRQL) in these patients. Objectives: To establish detailed information on living conditions and HRQL in patients with invasive HMV. Methods: The Severe Respiratory Insufficiency Questionnaire (SRI) was used to measure specific HRQL aspects in addition to patient interviews on individual living conditions during home visits. Results: Thirty-two patients with lung disease, most prominently COPD (n = 18), and neuromuscular disorders (n = 14) were included. The overall mean SRI summary scale score (range 0-100) was 53 ± 16, with a broad range amongst individuals (23-86). Neuromuscular patients were younger than those with lung diseases (49 ± 18 vs. 67 ± 11 years; p < 0.005), and although they had a higher nursing dependency and fewer comorbidities, they tended to have higher (better) SRI summary scale scores (58 ± 16 vs. 48 ± 15; p = 0.092). Living in a private home compared to living in nursing facilities did not influence the SRI scores. Conclusions: Patients undergoing invasive HMV primarily following unsuccessful weaning reported an individual HRQL which, when taken together, was highly heterogeneous and ranged from very good to extremely bad. Older patients with COPD and more comorbidities are likely to have a worse HRQL than neuromuscular patients, while the living situation does not influence the HRQL.

Factors associated with change in health‐related quality of life among individuals treated with long‐term mechanical ventilation, a 6‐year follow‐up study

“…Validity and reliability in quality of life research has been discussed (Macduff, ; Moons et al., ). Good validity and international relevance of this study is provided by using the SRI questionnaire, that has shown very good psychometric qualities and has been professionally adapted and translated into several languages (Duiverman, Wempe, Bladder, Kerstjens, & Wijkstra, ; Ghosh, Rzehak, Elliott, & Windisch, ; Huttmann et al., , p. 280; López‐Campos et al., ; MacIntyre et al., ; Markussen et al., ; Oga et al., ; Ribeiro, Ferreira, Conde, Oliveira, & Windisch, ; Struik et al., ; Windisch, ; Windisch et al., ). Reliability and rigour are provided through high‐quality clinical data from the LTMV registry.…”

“…The largest improvements were observed in NMD and OHS patients in the ‘attendant symptoms and sleep’ domain (Windisch, ). Co‐morbidity was more prevalent in older patients with COPD, reducing their SRI score compared with younger patients with NMD (Huttmann, Windisch, & Storre, ). The physiological efficacy of the LTMV treatment is to decrease the work of breathing and support gas exchange (Georgopoulo, ).…”

Schlaf- und Lebensqualität in der außerklinischen Beatmung

“…Wenn außerklinische Versorgung bildet die Grundlage für eine adäquate medizinische Versorgung, sorgt aber auch für eine erhöhte Lebensqualität und Autonomie der Patienten [8,22,55]. Bei der invasiven Beatmung stehen neben der fachpflegerischen 1:1-Versorgung in dem gewohnten häuslichen Umfeld weitere Versorgungsformen wie Beatmungsheime oder auch Wohngemeinschaften zur Verfügung [21].…”

“…RCT, multizentrisch RCT, "crossover" ACV "assisted volume ventilation", AHI Apnoe-Hypopnoe-Index, AI Arousal-Index, ALS amyotrophe Lateralsklerose, APCV "assisted pressure-controlled ventilation", AVAPS "average volume-assured pressure support", BiPAP "bilevel positive airway pressure", CCHS kongenitales zentrales Hypoventilationssyndrom, COPD "chronic obstructive lung disease", chronisch obstruktive Lungenerkrankung, CPAP "continuous positive airway pressure", FSHD fazioskapulohumerale Muskeldystrophie, HI-NPPV "high intensity non-invasive positive pressure ventilation", iVAPS "intelligent volume-assured pressure support", LI-NPPV "low intensity non-invasive positive pressure", LTOT "long-term oxygen therapy", Sauerstoff-Langzeittherapie, MG Myasthenia gravis, MM mitochondriale Myopathie, NIV "noninvasive ventilation", NMD "neuromuscular disease", OHS "obesity hypoventilation syndrome", PCV "pressure-controlled ventilation", pl-NPPV "pressure-limited non-invasive positive pressure ventilation", PNRS "prospective non-randomized controlled study", PS "pressure support", PSG Polysomnographie, PSV-VG "volume-guaranteed pressure support ventilation", RCT "randomized controlled trial", randomisierte kontrollierte Studie, REM "rapid eye movement", SMA spinale Muskelatrophie, SV "spontaneous ventilation", Spontanatmung, TBC Tuberkulose, TST "total sleep time", VPAP "variable positive airway pressure", VCV "volume-controlled ventilation", vl-NPPV "volume-limited non-invasive positive pressure ventilation" a Schlafqualität als primärer Endpunkt b Keine weiteren Informationen Patienten, die in Beatmungsheimen oder -wohngemeinschaften leben. Patienten mit neuromuskulären oder thorakalrestriktiven Erkrankungen scheinen dabei eine höhere gesundheitsbezogene Lebensqualität aufzuweisen als ältere multimorbide Patienten mit primär pulmonalen Erkrankungen [22]. In der Zusammenschau der aktuellen Studienlage zeigt sich, dass Patienten mit NMD eine hohe Lebensqualität aufweisen können, unabhängig davon, ob die Patienten eine invasive oder nichtinvasive Beatmungsform erhalten [22,29,36].…”

“…Patienten mit neuromuskulären oder thorakalrestriktiven Erkrankungen scheinen dabei eine höhere gesundheitsbezogene Lebensqualität aufzuweisen als ältere multimorbide Patienten mit primär pulmonalen Erkrankungen [22]. In der Zusammenschau der aktuellen Studienlage zeigt sich, dass Patienten mit NMD eine hohe Lebensqualität aufweisen können, unabhängig davon, ob die Patienten eine invasive oder nichtinvasive Beatmungsform erhalten [22,29,36]. Eingeschränkt in der HRQL sind Patienten, die nur kurze Phasen der Spontanatmung zeigten, hohe Inspirationsdrücke oder einen niedrigeren Barthel-Index aufweisen [45].…”