Journal
ACTA NEUROLOGICA SCANDINAVICA
Volume 121, Issue 4, Pages 244-250Publisher
WILEY-BLACKWELL PUBLISHING, INC
DOI: 10.1111/j.1600-0404.2009.01191.x
Keywords
amyotrophic lateral sclerosis; caregiver; gender; next of kin; physical function; quality of life; well-being
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Funding
- Swedish Association of Persons with Neurological Disabilities
- Foundation for Neurological Research
- Edit Jacobson Foundation
- Ulrica Crone Foundation
- Florence Nightingale Foundation
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Objectives - The well-being and physical function among patients with ALS and their next of kin was studied over time. Materials and methods - Thirty-five patients with ALS and their next of kin were studied with respect to physical, general and psychological well-being by the visual analogue scale (VAS) every 4-6 months. Physical function in patients was rated by the ALSFRS-R and the Norris scale. Patients and next of kin rated the well-being of themselves and their counterpart. Results - The well-being was stable and there was a relation between the well-being of patients and next of kin throughout the time studied. Next of kin rated the well-being of the patients worse than patients rated themselves, while patients rated the well-being of their next of kin at the same level as their counterpart. Conclusions - The basic state of well-being as well as the interaction between patient and next of kin seem to be factors that influence the well-being of both patients and their next of kin.
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