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

Ambra Giovannetti, Erika Pietrolongo, Andrea Giordano, V. Cimino, Angela Campanella, Giovanni Morone, Augusto Fusco, Alessandra Lugaresi, Paolo Agostino Confalonieri, Francesco Patti, Maria Grazia Grasso, M. Ponzio, S. Veronese, Alessandra Solari

Research output: Contribution to journalArticlepeer-review


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.

Original languageEnglish
Pages (from-to)1-9
Number of pages9
JournalQuality of Life Research
Publication statusAccepted/In press - Apr 28 2016


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

ASJC Scopus subject areas

  • Public Health, Environmental and Occupational Health

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