PMID: 3384199Apr 1, 1988Paper

Ventilator use in progressive neuromuscular disease: impact on patients and their families

Developmental Medicine and Child Neurology
J R MillerN C Schock

Abstract

The question of extending the lives of patients with progressive neuromuscular disease by means of ventilator support is controversial. It has been documented that ventilators can prolong the lives of patients with Duchenne muscular dystrophy by between two and 25 years, but few studies have assessed the effects of their use on individual or family functioning, or the quality of survival. A sample of patients with progressive disease and families living in the community was surveyed to assess these effects. Most of the sample were satisfied with their decision to extend life with the ventilator, but they found the experience significantly stressful in the home. Both patients and families believed their health-care team could have met their needs more comprehensively. Recommendations are made for health-care professionals working with patients with late-stage neuromuscular disease who need to use ventilators.

References

Jan 1, 1972·Chest·E J HapkeJ Jacobs

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Citations

Mar 11, 2006·American Journal of Medical Genetics. Part a·Lainie Friedman Ross
Mar 12, 2019·Journal of Neuromuscular Diseases·Navid KhanUNKNOWN Eteplirsen Investigators and the CINRG DNHS Investigators
Apr 1, 1996·Acta Paediatrica Japonica; Overseas Edition·Y SakakiharaS Kamoshita
Sep 15, 2000·Pediatrics International : Official Journal of the Japan Pediatric Society·Y SakakiharaA Oka
Jun 12, 2001·American Journal of Physical Medicine & Rehabilitation·R G van KesterenL W van Leyden
Oct 31, 2002·American Journal of Respiratory and Critical Care Medicine·Hélène PrigentFrédéric Lofaso
Aug 11, 2004·American Journal of Respiratory and Critical Care Medicine·Jonathan D FinderUNKNOWN American Thoracic Society
Oct 8, 2016·International Journal of Qualitative Studies on Health and Well-being·Haruo FujinoOsamu Imura

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