Quality of life and psychosocial issues in ventilated patients with amyotrophic lateral sclerosis and their caregivers.

Details

Serval ID
serval:BIB_71456BDE67F1
Type
Article: article from journal or magazin.
Collection
Publications
Title
Quality of life and psychosocial issues in ventilated patients with amyotrophic lateral sclerosis and their caregivers.
Journal
Journal of Pain and Symptom Management
Author(s)
Kaub-Wittemer D., Steinbüchel N.v., Wasner M., Laier-Groeneveld G., Borasio G.D.
ISSN
0885-3924 (Print)
ISSN-L
0885-3924
Publication state
Published
Issued date
2003
Volume
26
Number
4
Pages
890-896
Language
english
Notes
Publication types: Journal ArticlePublication Status: ppublish
Abstract
Non-invasive ventilation (NIV) is an efficient palliative measure for symptoms of chronic hypoventilation in patients with amyotrophic lateral sclerosis (ALS), and can also lengthen survival. A subset of ALS patients undergoes tracheostomy ventilation (TV) for life prolongation. We investigated the quality of life (QOL) and psychosocial situation of 52 home ventilated ALS patients and their caregivers. The battery included sociodemographic, generic, and disease-specific variables, as well as the Profile of Mood States and the Munich Quality of Life Dimensions List. Data were compared between the NIV (n=32) and the TV (n=21) groups. Mean ventilation time was 14 months for NIV and 35 months for TV. Eighty-one percent of TV patients had been tracheotomized without informed consent. The data show a good overall QOL for both NIV and TV patients, but a very high burden of care for TV caregivers, 30% of whom rated their own QOL lower than their patient's QOL. Sexuality was an important issue. Thus, any assessment of QOL in a home palliative care situation should include the primary caregivers.
Keywords
Aged, Aged, 80 and over, Amyotrophic Lateral Sclerosis/psychology, Amyotrophic Lateral Sclerosis/therapy, Caregivers/psychology, Female, Humans, Male, Middle Aged, Psychology, Quality of Life, Ventilators, Mechanical
Pubmed
Web of science
Create date
13/01/2014 18:24
Last modification date
20/08/2019 15:29
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