[Assessment of quality of life for home ventilated patients with Duchenne muscular dystrophy].
A social and psychological survey was conducted for patients with DMD submitted to home mechanical ventilation for more than one year. Thirty six were tracheostomized and 16 were using non invasive ventilation. Fifty two patients were recruited: 36 were tracheostomized and 16 were using non invasive ventilation. Mean age was 25 +/- 5 years. In the two groups: 1- the main disagreement was air leaking and cutaneous erosions. 2- when present, headache, dyspnea, sleep troubles and general fatigue were improved by mechanical ventilation. 3- ventilation was considered as improving health but with an increasing of dependencies. 4- Majors disappointment are sexual life (70 percent) and physical status (40 percent) but patients spent more than half time with positive feeling (92 percent). There was no difference between satisfaction evaluation and type of ventilation. Home ventilated patients with DMD have positive assessment of satisfaction. Despite technical disagreement as air leaking, patients feel an improvement of their life and advise other DMD to use early home ventilation.
Raphaël
J C
JC
Service de Réanimation Médicale, Hôpital Raymond Poincaré, 92380 Garches, France.
Dazord
A
A
Jaillard
P
P
Andronikof-Sanglade
A
A
Benony
H
H
Kovess
V
V
Charpak
Y
Y
Auriant
I
I
D000328:Adult; D005260:Female; D006699:Home Care Services; D006801:Humans; D008297:Male; D020388:Muscular Dystrophy, Duchenne / Q000150:complications / Q000175:diagnosis / Q000523:psychology*; D017060:Patient Satisfaction; D011788:Quality of Life; D012120:Respiration Disorders / Q000175:diagnosis / Q000209:etiology / Q000628:therapy*; D012121:Respiration, Artificial / Q000295:instrumentation; D012720:Severity of Illness Index; D011795:Surveys and Questionnaires; D013997:Time Factors; D014139:Tracheostomy / Q000295:instrumentation