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Gepubliceerd in: Quality of Life Research 11/2016

28-04-2016

Individualized quality of life of severely affected multiple sclerosis patients: practicability and value in comparison with standard inventories

Auteurs: A. M. Giovannetti, E. Pietrolongo, A. Giordano, V. Cimino, A. Campanella, G. Morone, A. Fusco, A. Lugaresi, P. Confalonieri, F. Patti, M. G. Grasso, M. Ponzio, S. Veronese, A. Solari

Gepubliceerd in: Quality of Life Research | Uitgave 11/2016

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Abstract

Purpose

Individualized quality of life (QoL) measures differ from traditional inventories in that QoL domains/weights are not predetermined, but identified by the individual. We assessed practicability of the Schedule for the Evaluation of Individual QoL-Direct Weighting (SEIQoL-DW) interview in severely affected multiple sclerosis (MS) patients; the key QoL dimensions identified; and the correlation of the SEIQoL-DW index score with standard patient-reported outcome measures (PROMs).

Methods

Participants were people with severe MS who performed the baseline visit of the PeNSAMI trial (ISRCTN73082124). The SEIQoL-DW was administered at the patient’s home by a trained examiner. Patients then received the following PROMs: the Core-Palliative care Outcome Scale (Core-POS), the Palliative care Outcome Scale-Symptoms-MS (POS-S-MS), the European Quality of Life Five Dimensions-3L (EQ-5D-3L), and the Hospital Anxiety and Depression Scale (HADS).

Results

Of 59 enrolled patients, 11 (19 %) did not receive the SEIQoL-DW (and the other PROMs) because of severe cognitive compromise or inability to communicate. SEIQoL-DW administration was completed and deemed valid in all 48 cases (mean age 60 years, 58 % women, median Expanded Disability Status Scale score 8.5). Mean SEIQoL-DW index score was 59.1 (SD 25.5). The most commonly nominated SEIQoL-DW areas were family (94 % of the patients), relationships, and leisure activities (both 65 %). Core-POS and POS-S-MS contained 70 % of the SEIQoL-DW-nominated areas. Nevertheless, correlations between SEIQoL-DW index, Core-POS, and POS-S-MS (and the other PROMs) were negligible.

Conclusions

Individualized QoL can be assessed in severely affected MS patients, providing information that is not tracked by the standard inventories Core-POS, POS-S-MS, EQ-5D-3L, and HADS.
vorige artikel Health-related quality of life in patients with psoriasis: a systematic review of the European literature
volgende artikel Exploring the individual patterns of spiritual well-being in people newly diagnosed with advanced cancer: a cluster analysis
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Metagegevens
Titel
Individualized quality of life of severely affected multiple sclerosis patients: practicability and value in comparison with standard inventories
Auteurs
A. M. Giovannetti
E. Pietrolongo
A. Giordano
V. Cimino
A. Campanella
G. Morone
A. Fusco
A. Lugaresi
P. Confalonieri
F. Patti
M. G. Grasso
M. Ponzio
S. Veronese
A. Solari
Publicatiedatum
28-04-2016
Uitgeverij
Springer International Publishing
Gepubliceerd in
Quality of Life Research / Uitgave 11/2016
Print ISSN: 0962-9343
Elektronisch ISSN: 1573-2649
DOI
https://doi.org/10.1007/s11136-016-1303-9

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