Patients' assessment of quality of life instruments: a randomised study of SIP, SF-36 and SEIQoL-DW in patients with amyotrophic lateral sclerosis.

Details

Serval ID
serval:BIB_304EF565F8D4
Type
Article: article from journal or magazin.
Collection
Publications
Title
Patients' assessment of quality of life instruments: a randomised study of SIP, SF-36 and SEIQoL-DW in patients with amyotrophic lateral sclerosis.
Journal
Journal of the Neurological Sciences
Author(s)
Neudert C., Wasner M., Borasio G.D.
ISSN
0022-510X (Print)
ISSN-L
0022-510X
Publication state
Published
Issued date
2001
Volume
191
Number
1-2
Pages
103-109
Language
english
Notes
Publication types: Clinical Trial ; Journal Article ; Randomized Controlled TrialPublication Status: ppublish
Abstract
The evaluation of quality of life (QoL) plays an increasingly important role in clinical research and drug trials in ALS. However, most of the scales employed so far are based on a fixed external value system, and may therefore not reflect the patients' subjective perception of QoL accurately. In addition, many ALS patients complain about the psychological distress inflicted by QoL questionnaires which focus on functional status, as they constantly remind patients of their deterioration. We therefore asked 42 ALS patients to assess, using visual analogue scales, their subjective perception of the validity of three QoL instruments as well as the emotional distress caused by them. The scales were: the Sickness Impact Profile (SIP), the Short Form 36 (SF-36), and the Schedule for the Evaluation of Individual QoL-Direct Weighting (SEIQoL-DW). Patients were examined at least three times at two-month intervals. The SIP was filled out by all patients, the SF-36 and the SEIQoL-DW were assigned at random. The validity of the SEIQoL-DW was rated higher than that of the SIP (p<0.001) and of the SF-36 (p<0.001). The SIP imparted a higher emotional distress to patients than the SEIQoL-DW (p<0.005), with a trend in the same direction for the SF-36 (p=0.082). The most frequently mentioned QoL-relevant domains in the SEIQoL-DW were family (100%), health (53%), and profession (50%). These results should prompt further discussion and investigation on the most appropriate way to assess QoL in patients with ALS.
Keywords
Amyotrophic Lateral Sclerosis/psychology, Cues, Demography, Female, Germany, Health Status Indicators, Humans, Male, Middle Aged, Patient Satisfaction/statistics & numerical data, Psychological Tests/statistics & numerical data, Quality of Life/psychology, Reproducibility of Results, Severity of Illness Index, Sickness Impact Profile, Stress, Psychological
Pubmed
Web of science
Create date
13/01/2014 17:21
Last modification date
20/08/2019 13:15
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