ABSTRACT
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.
Subject(s)
Amyotrophic Lateral Sclerosis/psychology , Physical Fitness/psychology , Quality of Life/psychology , Adult , Aged , Aged, 80 and over , Amyotrophic Lateral Sclerosis/physiopathology , Caregivers/psychology , Family/psychology , Female , Humans , Interpersonal Relations , Male , Middle Aged , Physical Fitness/physiology , Severity of Illness Index , Surveys and Questionnaires , Time FactorsABSTRACT
All visits to or by the district nurses in Gothenburg, Sweden, were registered during one week (daytime Monday to Friday). Altogether 5,250 visits were registered. 77 per cent of all visits concerned subjects 65 years of age or older and 54 per cent subjects 75 years of age or older. It was more common for a woman to visit or be visited by a district nurse than for a man. Of the visits 70 per cent were made by the nurses (59 per cent to the homes of the patients and 11 per cent to homes for the aged), while 30 per cent of all visits were made by the patients to the district nurse's office. Very few visits concerned foreigners living in Sweden. Visits to or by old people were slightly more time-consuming than those to or by younger patients. When planning resources for visits to or by the district nurses it seems that age is by far the most important factor to take into consideration.