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

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.