RESUMO
BACKGROUND: The Severe Respiratory Insufficiency (SRI) questionnaire is a specific measure of health-related quality of life (HRQoL) in patients treated with long-term mechanical ventilation (LTMV). The aim of the present study was to examine whether SRI sum scores and related subscales are associated with mortality in LTMV patients. METHODS: The study included 112 LTMV patients (non-invasive and invasive) from the Norwegian LTMV registry in Western Norway from 2008 with follow-up in August 2014. SRI data were obtained through a postal questionnaire, whereas mortality data were obtained from the Norwegian Cause of Death Registry. The SRI questionnaire contains 49 items and seven subscales added into a summary score (range 0-100) with higher scores indicating a better HRQoL. The association between the SRI score and mortality was estimated as hazard ratios (HRs) with 95% confidence intervals (95% CI) using Cox regression models and HRs were estimated per one unit change in the SRI score. RESULTS: Of the 112 participating patients in 2008, 52 (46%) had died by August 2014. The mortality rate was the highest in patients with chronic obstructive pulmonary disease (75%), followed by patients with neuromuscular disease (46%), obesity hypoventilation syndrome (31%) and chest wall disease (25%) (p < 0.001). Higher SRI sum scores in 2008 were associated with a lower mortality risk after adjustment for age, education, hours a day on LTMV, time since initiation of LTMV, disease category and comorbidity (HR 0.98, 95% CI: 0.96-0.99). In addition, SRI-Physical Functioning (HR 0.98, 95% CI: 0.96-0.99), SRI-Psychological Well-Being (HR 0.98, 95% CI: 0.97-0.99), and SRI-Social Functioning (HR 0.98, 95% CI: 0.97-0.99) remained significant risk factors for mortality after covariate adjustment. In the subgroup analyses of patient with neuromuscular diseases we found significant inverse associations between some of the SRI subscales and mortality. CONCLUSIONS: SRI score is associated with mortality in LTMV-treated patients. We propose the use of SRI in the daily clinic with repeated measurements as part of individual follow-up. Randomized clinical trials with interventions aimed to improve HRQoL in LTMV patients should consider the SRI questionnaire as the standard HRQoL measurement.
Assuntos
Nível de Saúde , Mortalidade , Qualidade de Vida , Respiração Artificial , Insuficiência Respiratória/terapia , Feminino , Humanos , Assistência de Longa Duração , Masculino , Pessoa de Meia-Idade , Doenças Neuromusculares/complicações , Doenças Neuromusculares/fisiopatologia , Doenças Neuromusculares/psicologia , Noruega , Síndrome de Hipoventilação por Obesidade/complicações , Síndrome de Hipoventilação por Obesidade/fisiopatologia , Síndrome de Hipoventilação por Obesidade/psicologia , Modelos de Riscos Proporcionais , Doença Pulmonar Obstrutiva Crônica/complicações , Doença Pulmonar Obstrutiva Crônica/fisiopatologia , Doença Pulmonar Obstrutiva Crônica/psicologia , Insuficiência Respiratória/etiologia , Insuficiência Respiratória/fisiopatologia , Insuficiência Respiratória/psicologia , Medição de Risco , Inquéritos e QuestionáriosRESUMO
Noninvasive ventilation is recommended to correct the nocturnal hypoventilation and relieve the symptoms of patients with the obesity-hypoventilation syndrome (OHS). The benefits of fixed pressure ventilation (S/T technology) are recognized but limited on account of the variability of nocturnal ventilatory requirements. The new technique AVAPS-AE (automatic EPAP) allows adjustment of the pressure according to the volume currently targeted. Its efficacy has not yet been evaluated. Our objectives are to evaluate firstly, whether AVAPS-AE optimizes the benefits of S/T technology on sleep architecture and quality, secondly, whether these benefits are associated with an improvement in gas exchange, symptoms, exercise tolerance, level of physical activity and quality of life of patients with OHS. In this multicenter trial, 60 newly diagnosed patients with OHS will be randomized to the control (S/T) and trial (AVAPS-AE) groups. A standardized titration procedure will be followed for the calibration of the ventilators. Functional evaluations (polysomnography, blood gases, impedance measurements and walking tests), questionnaires (physical activity, quality of life, quality of sleep and daytime somnolence) visual scales (fatigue, headaches) and a recording of activity will be undertaken after two months of ventilation.
Assuntos
Ventilação não Invasiva/métodos , Síndrome de Hipoventilação por Obesidade/terapia , Respiração com Pressão Positiva/métodos , Resistência das Vias Respiratórias , Automação , Gasometria , Distúrbios do Sono por Sonolência Excessiva/etiologia , Desenho de Equipamento , Tolerância ao Exercício , Expiração , Fadiga/etiologia , Cefaleia/etiologia , Humanos , Inalação , Síndrome de Hipoventilação por Obesidade/sangue , Síndrome de Hipoventilação por Obesidade/complicações , Síndrome de Hipoventilação por Obesidade/fisiopatologia , Síndrome de Hipoventilação por Obesidade/psicologia , Seleção de Pacientes , Polissonografia , Qualidade de Vida , Projetos de Pesquisa , Inquéritos e QuestionáriosRESUMO
Over the last 20 years the number of Dutch patients on home mechanical ventilation has increased from 200 to 2000. Home mechanical ventilation is a cost-effective treatment which significantly improves the quality of life of patients. In 2011 83% of patients on home mechanical ventilation in the Netherlands is living at home. In the future further growth can be expected in the number of patients with obesity hypoventilation syndrome and a potential new group of patients with COPD. Strict conditions are necessary to ensure safety in the complex care that home mechanical ventilation entails.
