title: Individualized quality of life of severely affected multiple sclerosis patients: practicability and value in comparison with standard inventories.
abstract: 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.
authors.affiliation: Unit of Neuroimmunology, and Neuromuscular Diseases, Foundation IRCCS Neurological Institute C. Besta, Milan, Italy.
authors.forename: A M
authors.initials: AM
authors.lastname: Giovannetti
authors.affiliation: Department of Neuroscience, Imaging and Clinical Sciences, G. d'Annunzio University of Chieti-Pescara, Chieti, Italy.
authors.forename: E
authors.initials: E
authors.lastname: Pietrolongo
authors.affiliation: Unit of Neuroepidemiology, Foundation IRCCS Neurological Institute C. Besta, Milan, Italy.
authors.forename: A
authors.initials: A
authors.lastname: Giordano
authors.affiliation: MS Centre, Neurology Clinic, University Hospital Policlinico Vittorio Emanuele, Catania, Italy.
authors.forename: V
authors.initials: V
authors.lastname: Cimino
authors.affiliation: Scientific Direction, Foundation IRCCS Neurological Institute C. Besta, Milan, Italy.
authors.forename: A
authors.initials: A
authors.lastname: Campanella
authors.affiliation: Multiple Sclerosis Unit, IRCCS S. Lucia Foundation, Rome, Italy.
authors.forename: G
authors.initials: G
authors.lastname: Morone
authors.affiliation: Multiple Sclerosis Unit, IRCCS S. Lucia Foundation, Rome, Italy.
authors.forename: A
authors.initials: A
authors.lastname: Fusco
authors.affiliation: Department of Neuroscience, Imaging and Clinical Sciences, G. d'Annunzio University of Chieti-Pescara, Chieti, Italy.
authors.forename: A
authors.initials: A
authors.lastname: Lugaresi
authors.affiliation: Unit of Neuroimmunology, and Neuromuscular Diseases, Foundation IRCCS Neurological Institute C. Besta, Milan, Italy.
authors.forename: P
authors.initials: P
authors.lastname: Confalonieri
authors.affiliation: MS Centre, Neurology Clinic, University Hospital Policlinico Vittorio Emanuele, Catania, Italy.
authors.forename: F
authors.initials: F
authors.lastname: Patti
authors.affiliation: Multiple Sclerosis Unit, IRCCS S. Lucia Foundation, Rome, Italy.
authors.forename: M G
authors.initials: MG
authors.lastname: Grasso
authors.affiliation: Department of Research, Fondazione Italiana Sclerosi Multipla (FISM), Genoa, Italy.
authors.forename: M
authors.initials: M
authors.lastname: Ponzio
authors.affiliation: FARO Charitable Foundation, Turin, Italy.
authors.forename: S
authors.initials: S
authors.lastname: Veronese
authors.affiliation: Unit of Neuroepidemiology, Foundation IRCCS Neurological Institute C. Besta, Milan, Italy. alessandra.solari@istituto-besta.it.
authors.forename: A
authors.initials: A
authors.lastname: Solari
mesh_terms: D000293:Adolescent; D000328:Adult; D000368:Aged; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D009103:Multiple Sclerosis / Q000523:psychology*; D018434:Sickness Impact Profile; D011795:Surveys and Questionnaires; D055815:Young Adult
keywords: Individualized measure; Outcome measure; Palliative care; Primary progressive multiple sclerosis; Quality of life; Secondary progressive multiple sclerosis