Quality of life and psychosocial issues in ventilated patients with amyotrophic lateral sclerosis and their caregivers
Autor: | Dagmar Kaub-Wittemer, Gian Domenico Borasio, Gerhard Laier-Groeneveld, Maria Wasner, Nicole von Steinbüchel |
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Rok vydání: | 2003 |
Předmět: |
Male
medicine.medical_specialty Palliative care medicine.medical_treatment MEDLINE Profile of mood states Tracheotomy Quality of life Informed consent Medicine Humans Psychology Amyotrophic lateral sclerosis General Nursing Aged Aged 80 and over Ventilators Mechanical business.industry Amyotrophic Lateral Sclerosis Middle Aged medicine.disease humanities Anesthesiology and Pain Medicine Caregivers Physical therapy Quality of Life Female Neurology (clinical) business Psychosocial |
Zdroj: | Journal of pain and symptom management. 26(4) |
ISSN: | 0885-3924 |
Popis: | 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. |
Databáze: | OpenAIRE |
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