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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.

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Unit of Neuroimmunology, and Neuromuscular Diseases, Foundation IRCCS Neurological Institute C. Besta, Milan, Italy.
Department of Neuroscience, Imaging and Clinical Sciences, G. d'Annunzio University of Chieti-Pescara, Chieti, Italy.
Unit of Neuroepidemiology, Foundation IRCCS Neurological Institute C. Besta, Milan, Italy.
MS Centre, Neurology Clinic, University Hospital Policlinico Vittorio Emanuele, Catania, Italy.
Scientific Direction, Foundation IRCCS Neurological Institute C. Besta, Milan, Italy.
Multiple Sclerosis Unit, IRCCS S. Lucia Foundation, Rome, Italy.
Department of Research, Fondazione Italiana Sclerosi Multipla (FISM), Genoa, Italy.
FARO Charitable Foundation, Turin, Italy.
Unit of Neuroepidemiology, Foundation IRCCS Neurological Institute C. Besta, Milan, Italy.



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).


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).


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.


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.


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

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