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Correlations in health status between estimates of families of people with amyotrophic lateral sclerosis and estimates of staff

Published online by Cambridge University Press:  27 September 2012

Anneli G. Ozanne  and
Lennart I. Persson
Anneli G. Ozanne*
Affiliation:
Department of Neurology, Institute of Clinical Neuroscience and Institute of Neuroscience and Physiology, Sahlgrenska University Hospital, Göteborg, Sweden
Lennart I. Persson
Affiliation:
Department of Neurology, Institute of Clinical Neuroscience and Institute of Neuroscience and Physiology, Sahlgrenska University Hospital, Göteborg, Sweden
*
Address correspondence and reprint requests to: Anneli G Ozanne, Department of Neurology, Utvecklingsenheten, SU/Högsbo, B4, Box 30110, 400 43 Göteborg, Sweden E-mail: anneli.ozanne@gu.se
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Abstract

Objective:

The aim of this study was to compare self-estimates of the physical, psychological, and general well-being of patients with amyotrophic lateral sclerosis (ALS) and their next of kin with the assessment of the nurses and physician of these participants.

Method:

The well-being of 35 pairs of patients and their next of kin was rated by themselves, and by a physician and nurses. The well-being was examined over time, using a visual analogue scale (VAS). Patients' physical function was estimated at the same time with the Amyotrophic Lateral Sclerosis Functional Rating Scale-Revised and the Norris scale.

Results:

The correlations between the staff's estimates of the well-being of patients and next of kin were similar to their own estimates, even though staff to a higher degree estimated a decrease in well-being over time among the patients. The estimates by the nurses correlated better to that of the patients and next of kin in psychological and general well-being than the physicians' estimates did.

Significance of results:

Even though the staff's estimates of participants were roughly equivalent to their self-estimates, there were some differences. This result calls attention to the importance of working in teams in which different professional roles are combined and integrated, making it possible to form a holistic view of the situation of each family. A concern overlooked by one member of staff might be covered by another, and different focuses on the family may give a better composite picture of their life situation, which could lead to better support to the family.

Keywords

ALSNext of kinMedical staffPatient well-being
Type
Original Articles
Information
Palliative & Supportive Care , Volume 11 , Issue 3 , June 2013 , pp. 183 - 189
Copyright
Copyright © Cambridge University Press 2012 

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