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

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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.

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Acknowledgments

This work was supported by the Fondazione Italiana Sclerosi Multipla (FISM) Grant Number 2014/S/1.

Author information

Authors and Affiliations

  1. Unit of Neuroimmunology, and Neuromuscular Diseases, Foundation IRCCS Neurological Institute C. Besta, Milan, Italy

    A. M. Giovannetti & P. Confalonieri

  2. Department of Neuroscience, Imaging and Clinical Sciences, G. d’Annunzio University of Chieti-Pescara, Chieti, Italy

    E. Pietrolongo & A. Lugaresi

  3. Unit of Neuroepidemiology, Foundation IRCCS Neurological Institute C. Besta, Milan, Italy

    A. Giordano & A. Solari

  4. MS Centre, Neurology Clinic, University Hospital Policlinico Vittorio Emanuele, Catania, Italy

    V. Cimino & F. Patti

  5. Scientific Direction, Foundation IRCCS Neurological Institute C. Besta, Milan, Italy

    A. Campanella

  6. Multiple Sclerosis Unit, IRCCS S. Lucia Foundation, Rome, Italy

    G. Morone, A. Fusco & M. G. Grasso

  7. Department of Research, Fondazione Italiana Sclerosi Multipla (FISM), Genoa, Italy

    M. Ponzio

  8. FARO Charitable Foundation, Turin, Italy

    S. Veronese

Authors
  1. A. M. Giovannetti
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  2. E. Pietrolongo
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  3. A. Giordano
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  4. V. Cimino
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  7. A. Fusco
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  8. A. Lugaresi
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  10. F. Patti
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  11. M. G. Grasso
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  13. S. Veronese
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  14. A. Solari
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Corresponding author

Correspondence to A. Solari.

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Conflict of interest

EP has received travel grants from Bayer, Biogen, Merck Serono, Novartis, Sanofi, and Teva. AL has been a Bayer, Biogen, Merck Serono, and Genzyme advisory board member. She received travel grants and honoraria from Bayer, Biogen, Merck Serono, Novartis, Sanofi, and Teva and her Institution received research grants from Bayer Schering, Biogen Idec, Merck Serono, Novartis, Sanofi Aventis, and Teva. PC has been a board member of Biogen and received travel grants from Sanofi, Biogen, and Merk Serono. FP has received speaking honoraria from Bayer, Biogen, Merck Serono, Novartis, and Sanofi. He has been a Bayer Schering, Biogen, Merck Serono, and Novartis advisory board member. MGG has received research funding from Merck Serono and consulting and speaking fees from Biogen. AS has been a board member of Biogen Idec and Novartis, and has received speaker honoraria from Excemed, Genzyme, and Merck Serono. All other authors declare that they have no competing interests.

Ethical approval

All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki Declaration and its later amendments or comparable ethical standards.

Informed consent

Informed consent was obtained from all individual participants included in the study.

Additional information

On behalf of the PeNSAMI project.

Please see the Appendix section for PeNSAMI project.

Appendix

Appendix

PeNSAMI project investigators.

Steering Committee: R Amadeo, A Giordano, M Ponzio, MG Grasso, A Lugaresi, F Patti, G Martino, L Palmisano, S Veronese, P Zaratin, MA Battaglia, A Solari.

Data Management and Analysis Committee: A Giordano, D Radice (statistician): Division of Epidemiology and Biostatistics, European Institute of Oncology, Milan; M Ponzio (statistician), G Ferrari, A Solari.

Independent Data and Safety Monitoring Committee: DJ Oliver: Wisdom Hospice, University of Kent, Rochester, Kent, UK; E Pucci: Neurology Unit, Ospedale Provinciale di Macerata, Macerata; L Tesio: Department of Biomedical Sciences for Health, University of Milan, Milan; The Istituto Auxologico Italiano, IRCCS, Milan.

Qualitative Analysis Panel: E Bianchi, E Pietrolongo, A Solari, A Giordano, I Rossi, S Cilia, M Giuntoli, C Borreani.

Literature Review Panel: MG Grasso, L Palmisano, A Fittipaldo, A Giordano.

Intervention Panel: C Cugno, R Causarano, P Morino: ‘Ex Convento delle Oblate’ Hospice, Local Health Unit of Florence, Florence, S Veronese.

Centers and Investigators: AISM Liguria Region Rehabilitation Service, Genoa: ML Lopes de Carvalho, M Giuntoli, R Motta, MA Battaglia; Antea Charitable Association, Rome: G Casale, MC Stefanelli; FARO Charitable Foundation, Turin: S Veronese, C Cugno; Foundation IRCCS Istituto Nazionale per la Cura dei Tumori, Milan: C Borreani, E Bianchi; Foundation IRCCS Neurological Institute C Besta, Milan: A Solari, P Confalonieri, AM Giovannetti, V Torri Clerici, E Rossetti, A Totis, A Campanella, A Giordano, F Martini, A Fittipaldo, G Ferrari, R Mantegazza; IRCCS S Lucia Foundation, Rome: MG Grasso, I Rossi, E Troisi, A Pompa, L Tucci, F Ippoliti, G Morone, A Fusco; Istituto Superiore di Sanità, Rome: L Palmisano; Associazione Italiana Sclerosi Multipla (AISM), Genoa: R Amadeo, G Martino; Fondazione Italiana Sclerosi Multipla (FISM), Genoa: P Zaratin, M Ponzio, MA Battaglia; Niguarda Ca’ Granda Hospital, Milan: R Causarano, D Da Col, B Lissoni; G d’Annunzio University, Chieti-Pescara, Chieti: A Lugaresi, E Pietrolongo, M Onofrj; University Hospital Policlinico Vittorio Emanuele, Catania: F Patti, S Cilia, C Leone, V Cascio, V Cimino, G Occhipinti, A Pappalardo, C Cavallaro, F Zagari.

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Giovannetti, A.M., Pietrolongo, E., Giordano, A. et al. Individualized quality of life of severely affected multiple sclerosis patients: practicability and value in comparison with standard inventories. Qual Life Res 25, 2755–2763 (2016). https://doi.org/10.1007/s11136-016-1303-9

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