Well-being in patients with amyotrophic lateral sclerosis and their next of kin over time

Abstract

Olsson AG, Markhede I, Strang S, Persson LI. Well-being in patients with amyotrophic lateral sclerosis and their next of kin over time. Acta Neurol Scand: 2010: 121: 244–250.© 2009 The Authors Journal compilation © 2009 Blackwell Munksgaard. 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.