An observational study on quality of life and preferences to sustain life in locked-in state
| Autor: | Cynthia Vázquez, Peter M. Andersen, Olga Helczyk, Markus Loose, Magdalena Kuzma-Kozakiewicz, Ingo Uttner, Albert C. Ludolph, Katarzyna Ciecwierska, Dorothée Lulé |
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| Jazyk: | angličtina |
| Rok vydání: | 2019 |
| Předmět: |
Gerontology
Neurologi Cross-sectional study MEDLINE Sample (statistics) Article 03 medical and health sciences 0302 clinical medicine Quality of life (healthcare) Surveys and Questionnaires Humans Medicine In patient 030212 general & internal medicine Amyotrophic lateral sclerosis Amyotrophic-lateral-sclerosis business.industry Depression Amyotrophic Lateral Sclerosis Neurodegenerative Diseases medicine.disease Ventilation 3. Good health Cross-Sectional Studies Neurology ALS patients Quality of Life Locked-In Syndrome Observational study Neurology (clinical) business 030217 neurology & neurosurgery |
| Zdroj: | Neurology |
| Popis: | ObjectiveThis is an observational study on well-being and end-of-life preferences in patients with amyotrophic lateral sclerosis (ALS) in the locked-in state (LIS) in a Polish sample within the EU Joint Programme–Neurodegenerative Disease Research study NEEDSinALS (NEEDSinALS.com).MethodsIn this cross-sectional study, patients with ALS in LIS (n = 19) were interviewed on well-being (quality of life, depression) as a measure of psychosocial adaptation, coping mechanisms, and preferences towards life-sustaining treatments (ventilation, percutaneous endoscopic gastroscopy) and hastened death. Also, clinical data were recorded (ALS Functional Rating Scale–revised version). Standardized questionnaires (Anamnestic Comparative Self-Assessment [ACSA], Schedule for the Evaluation of Individual Quality of Life-Direct Weighting (SEIQoL-DW), ALS Depression Inventory–12 items [ADI-12], schedule of attitudes toward hastened death [SAHD], Motor Neuron Disease Coping Scale) were used, which were digitally transcribed; answers were provided via eye-tracking control. In addition, caregivers were asked to judge patients' well-being.ResultsThe majority of patients had an ACSA score >0 and a SEIQoL score >50% (indicating positive quality of life) and ADI-12 InterpretationSome patients with ALS in LIS maintain a high sense of well-being despite severe physical restrictions. They are content with their life-sustaining treatments and have a strong will to live, which both may be underestimated by their families and public opinion. |
| Databáze: | OpenAIRE |
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