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Qual Life Res. 2016 Nov;25(11):2755-2763. Epub 2016 Apr 28.

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

Author information

1
Unit of Neuroimmunology, and Neuromuscular Diseases, Foundation IRCCS Neurological Institute C. Besta, Milan, Italy.
2
Department of Neuroscience, Imaging and Clinical Sciences, G. d'Annunzio University of Chieti-Pescara, Chieti, Italy.
3
Unit of Neuroepidemiology, Foundation IRCCS Neurological Institute C. Besta, Milan, Italy.
4
MS Centre, Neurology Clinic, University Hospital Policlinico Vittorio Emanuele, Catania, Italy.
5
Scientific Direction, Foundation IRCCS Neurological Institute C. Besta, Milan, Italy.
6
Multiple Sclerosis Unit, IRCCS S. Lucia Foundation, Rome, Italy.
7
Department of Research, Fondazione Italiana Sclerosi Multipla (FISM), Genoa, Italy.
8
FARO Charitable Foundation, Turin, Italy.
9
Unit of Neuroepidemiology, Foundation IRCCS Neurological Institute C. Besta, Milan, Italy. alessandra.solari@istituto-besta.it.

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.

KEYWORDS:

Individualized measure; Outcome measure; Palliative care; Primary progressive multiple sclerosis; Quality of life; Secondary progressive multiple sclerosis

PMID:
27125955
DOI:
10.1007/s11136-016-1303-9
[Indexed for MEDLINE]

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