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Titolo:
Patients' assessment of quality of life instruments: a randomised study ofSIP, SF-36 and SEIQoL-DW in patients with amyotrophic lateral sclerosis
Autore:
Neudert, C; Wasner, M; Borasio, GD;
Indirizzi:
Univ Munich, Dept Neurol, D-81366 Munich, Germany Univ Munich Munich Germany D-81366 Dept Neurol, D-81366 Munich, Germany Univ Munich, Interdisciplinary Palliat Care Unit, D-81366 Munich, Germany Univ Munich Munich Germany D-81366 at Care Unit, D-81366 Munich, Germany
Titolo Testata:
JOURNAL OF THE NEUROLOGICAL SCIENCES
fascicolo: 1-2, volume: 191, anno: 2001,
pagine: 103 - 109
SICI:
0022-510X(20011015)191:1-2<103:PAOQOL>2.0.ZU;2-R
Fonte:
ISI
Lingua:
ENG
Soggetto:
GROWTH-FACTOR-I; OF-LIFE; HEALTH-STATUS; ALS; CANCER; PROGRESSION; PROFILE;
Keywords:
amyotrophic lateral sclerosis; motor neurone disease; quality of life; health status; SEIQoL-DW; SF-36; SIP;
Tipo documento:
Article
Natura:
Periodico
Settore Disciplinare:
Life Sciences
Citazioni:
41
Recensione:
Indirizzi per estratti:
Indirizzo: Borasio, GD Univ Munich, Hosp Grosshadern, Dept Neurol, D-81366 Munich, Germany Univ Munich Munich Germany D-81366 , D-81366 Munich, Germany
Citazione:
C. Neudert et al., "Patients' assessment of quality of life instruments: a randomised study ofSIP, SF-36 and SEIQoL-DW in patients with amyotrophic lateral sclerosis", J NEUR SCI, 191(1-2), 2001, pp. 103-109

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 scalesemployed 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 ofthe validity of three QoL instruments as well as the emotional distress caused by them. The scales were: the Sickness Impact Profile (SIP), the ShortForm 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 promptfurther discussion and investigation on the most appropriate way to assessQoL in patients with ALS. (C) 2001 Elsevier Science B.V. All rights reserved.

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Documento generato il 05/12/20 alle ore 07:56:42