journal article Apr 01, 2017

Attitudes and preferences of home mechanical ventilation users from four European countries: an ERS/ELF survey

View at Publisher Save 10.1183/23120541.00015-2017
Abstract
Home mechanical ventilation is increasingly used by people with chronic respiratory failure. However, there are few reports on attitudes towards treatment.A web-based survey in eight languages was disseminated across 11 European countries to evaluate the perception of home mechanical ventilation provision in ventilator-assisted individuals and caregivers.Out of 787 responders from 11 European countries, 687 were patients and 100 were caregivers. 95% of patients and 94% of caregivers were from only 4 countries (Germany, the Netherlands, Italy, Spain). The majority of respondents were male and aged 46–65 years. Obstructive lung diseases were proportionally more represented among respondent patients (46%), and neuromuscular diseases (65%) were more represented among patients of respondent caregivers. About 20% of respondent patients and caregivers were not sure of the modality of ventilation. Different interfaces were used, with a minority of respondents in all countries using invasive home mechanical ventilation by tracheostomy.These results may be useful for healthcare providers and policy makers to improve the quality of patients' daily lives.
Topics

No keywords indexed for this article. Browse by subject →

References
32
[4]
Escarrabill "Variability in home mechanical ventilation prescription" Arch Bronconeumol (2015) 10.1016/j.arbres.2014.11.018
[6]
MacIntyre "Clinical outcomes associated with home mechanical ventilation: a systematic review" Can Respir J (2016) 10.1155/2016/6547180
[11]
Brooks "User perspectives on issues that influence the quality of daily life of ventilator-assisted individuals with neuromuscular disorders" Can Respir J (2004) 10.1155/2004/659147
[13]
Evans "Family caregiver perspectives on caring for ventilator-assisted individuals at home" Can Respir J (2012) 10.1155/2012/452898
[17]
Bowling A . Research Methods in Health: Investigating Health and Health Services. 4th Edn. Maidenhead, Open University Press, 2014.
[18]
Shaghaghi "Approaches to recruiting “hard-to-reach” populations into research: a review of the literature" Health Promot Perspect (2011)
[19]
Masefield S , Powell P , Vitacca M , et al. Calling for comfort: the unmet needs of European home ventilator users. RED Guide 2016–2017; 32–37.
[20]
Masefield "The unmet needs of home mechanical ventilator users in Europe: the patients’ perspective" Eur Respir J (2016)
[21]
Simonds "Home mechanical ventilation: an overview" Ann Am Thorac Soc (2016) 10.1513/annalsats.201606-454fr
[23]
Respiratory Care of the Patient with Duchenne Muscular Dystrophy
American Review of Respiratory Disease 10.1164/rccm.200307-885st
[24]
Harris DR . Aging Sourcebook: Basic Information on Issues Affecting Older Americans, Including Demographic Trends, Social Security, Medicare, Estate Planning, Legal Rights, Health and Safety, Elder Care Options, Retirement Lifestyle Options, and End of Life Issues . Detroit, Omnigraphics, 1998.
[28]
Windisch "Guidelines for non-invasive and invasive mechanical ventilation for treatment of chronic respiratory failure" Pneumologie (2010) 10.1055/s-0030-1255558
[29]
Home Mechanical Ventilation: A Canadian Thoracic Society Clinical Practice Guideline

Douglas A McKim, Jeremy Road, Monica Avendano et al.

Canadian Respiratory Journal 2011 10.1155/2011/139769
[30]
Global Initiative for Chronic Obstructive Lung Disease. GOLD Strategy for Diagnosis, Management, and Prevention of COPD – 2016. http://goldcopd.org/global-strategy-diagnosis-management-prevention-copd-2016/ Date last accessed: December 2016.
[31]
Crimi "Domiciliary non-invasive ventilation in COPD: an international survey of indications and practices" COPD (2016) 10.3109/15412555.2015.1108960
[32]
Vitacca "Home mechanical ventilation patients: a retrospective survey to identify level of burden in real life" Monaldi Arch Chest Dis (2007)
Metrics
43
Citations
32
References
Details
Published
Apr 01, 2017
Vol/Issue
3(2)
Pages
00015-2017
Cite This Article
Sarah Masefield, Michele Vitacca, Michael Dreher, et al. (2017). Attitudes and preferences of home mechanical ventilation users from four European countries: an ERS/ELF survey. ERJ Open Research, 3(2), 00015-2017. https://doi.org/10.1183/23120541.00015-2017