39 results on '"Pietrolongo, Erika"'
Search Results
2. Job satisfaction among physicians and nurses involved in the management of multiple sclerosis: the role of happiness and meaning at work
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Negri, Luca, Cilia, Sabina, Falautano, Monica, Grobberio, Monica, Niccolai, Claudia, Pattini, Marianna, Pietrolongo, Erika, Quartuccio, Maria Esmeralda, Viterbo, Rosa Gemma, Allegri, Beatrice, Amato, Maria Pia, Benin, Miriam, De Luca, Giovanna, Gasperini, Claudio, Minacapelli, Eleonora, Patti, Francesco, Trojano, Maria, and Bassi, Marta
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- 2022
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3. Assessing measurement invariance of MSQOL-54 across Italian and English versions
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Giordano, Andrea, Testa, Silvia, Bassi, Marta, Cilia, Sabina, Bertolotto, Antonio, Quartuccio, Maria Esmeralda, Pietrolongo, Erika, Falautano, Monica, Grobberio, Monica, Niccolai, Claudia, Allegri, Beatrice, Viterbo, Rosa Gemma, Confalonieri, Paolo, Giovannetti, Ambra Mara, Cocco, Eleonora, Grasso, Maria Grazia, Lugaresi, Alessandra, Ferriani, Elisa, Nocentini, Ugo, Zaffaroni, Mauro, De Livera, Alysha, Jelinek, George, Solari, Alessandra, and Rosato, Rosalba
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- 2020
4. The Contribution of Illness Beliefs, Coping Strategies, and Social Support to Perceived Physical Health and Fatigue in Multiple Sclerosis
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Bassi, Marta, Grobberio, Monica, Negri, Luca, Cilia, Sabina, Minacapelli, Eleonora, Niccolai, Claudia, Pattini, Marianna, Pietrolongo, Erika, Quartuccio, Maria Esmeralda, Viterbo, Rosa Gemma, Allegri, Beatrice, Amato, Maria Pia, Benin, Miriam, De Luca, Giovanna, Falautano, Monica, Gasperini, Claudio, Patti, Francesco, Trojano, Maria, and Delle Fave, Antonella
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- 2021
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5. Meaningful cognitive change for the Minimal Assessment of Cognitive Function in Multiple Sclerosis.
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Portaccio, Emilio, Grossi, Paola, Bellomi, Fabio, Bianchi, Valentina, Cilia, Sabina, Falautano, Monica, Goretti, Benedetta, Niccolai, Claudia, Pietrolongo, Erika, Viterbo, Rosa Gemma, and Amato, Maria Pia
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MULTIPLE sclerosis ,COGNITIVE ability ,FUNCTIONAL assessment ,REFERENCE values ,REGRESSION analysis ,SELF-monitoring (Psychology) - Abstract
Background: There is limited information on interpretation of cognitive changes over time in multiple sclerosis (MS). Objective: This study aimed to provide normative data for the assessment of statistically meaningful change in all tests of the Minimal Assessment of Cognitive Function in MS (MACFIMS). Methods: We applied the reliable change methodology to a healthy Italian cohort, assessed with two alternate versions of the MACFIMS 1 year apart. We calculated confidence intervals of retest score variance using the reliable change index (RCI). Moreover, multivariable linear regression models adjusted for age, sex, education, and baseline score were built to calculate the regression-based change index (RB-CI). Results: Overall, 200 healthy individuals were enrolled. Thresholds for interpreting change in each test were calculated. In the multivariable models, baseline score was associated with retest score in all tests (B from 0.439 to 0.760; p < 0.001). RB-CI can be calculated with data of the multivariable models. Conclusion: We provide normative data for reliable cognitive change evaluation for all the tests of the MACFIMS, which includes the Symbol Digit Modalities Test and Brief International Cognitive Assessment in MS, two widely used tools for screening and monitoring cognition in MS. Our findings can significantly improve the interpretation of cognitive changes in MS. [ABSTRACT FROM AUTHOR]
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- 2024
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6. Risk attitude and personality in people with multiple sclerosis facing the choice of different disease-modifying therapy scenarios
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Minacapelli, Eleonora, Giordano, Andrea, Falautano, Monica, Sangalli, Francesca, Pietrolongo, Erika, Lorefice, Lorena, Cocco, Eleonora, Lugaresi, Alessandra, Comi, Giancarlo, Filippi, Massimo, and Martinelli, Vittorio
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- 2020
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7. Viability of a MSQOL-54 general health-related quality of life score using bifactor model
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Giordano, Andrea, Testa, Silvia, Bassi, Marta, Cilia, Sabina, Bertolotto, Antonio, Quartuccio, Maria Esmeralda, Pietrolongo, Erika, Falautano, Monica, Grobberio, Monica, Niccolai, Claudia, Allegri, Beatrice, Viterbo, Rosa Gemma, Confalonieri, Paolo, Giovannetti, Ambra Mara, Cocco, Eleonora, Grasso, Maria Grazia, Lugaresi, Alessandra, Ferriani, Elisa, Nocentini, Ugo, Zaffaroni, Mauro, De Livera, Alysha, Jelinek, George, Solari, Alessandra, and Rosato, Rosalba
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- 2021
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8. Italian validation of the caregiving tasks in multiple sclerosis scale (CTiMSS)
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Negri, Luca, Minacapelli, Eleonora, Bassi, Marta, Cilia, Sabina, Falautano, Monica, Grobberio, Monica, Niccolai, Claudia, Pattini, Marianna, Pietrolongo, Erika, Quartuccio, Maria Esmeralda, Viterbo, Rosa Gemma, Allegri, Beatrice, Amato, Maria Pia, Benin, Miriam, De Luca, Giovanna, Gasperini, Claudio, Patti, Francesco, Trojano, Maria, and Delle Fave, Antonella
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- 2020
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9. The minimal neuropsychological assessment of MS patients (MACFIMS): normative data of the Italian population
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Grossi, Paola, Portaccio, Emilio, Bellomi, Fabio, Bianchi, Valentina, Cilia, Sabina, Falautano, Monica, Goretti, Benedetta, Pietrolongo, Erika, Viterbo, Rosa Gemma, and Messmer Uccelli, Michele
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- 2020
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10. Comparative effectiveness of autologous hematopoietic stem cell transplant vs Fingolimod, Natalizumab, and Ocrelizumab in highly active relapsing-remitting multiple sclerosis
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Kalincik, Tomas, Sharmin, Sifat, Roos, Izanne, Freedman, Mark S., Atkins, Harold, Burman, Joachim, Massey, Jennifer, Sutton, Ian, Withers, Barbara, Macdonell, Richard, Grigg, Andrew, Torkildsen, Øivind, Bo, Lars, Lehmann, Anne Kristine, Havrdova, Eva Kubala, Krasulova, Eva, Trněný, Marek, Kozak, Tomas, van der Walt, Anneke, Butzkueven, Helmut, McCombe, Pamela, Skibina, Olga, Lechner-Scott, Jeannette, Willekens, Barbara, Cartechini, Elisabetta, Ozakbas, Serkan, Alroughani, Raed, Kuhle, Jens, Patti, Francesco, Duquette, Pierre, Lugaresi, Alessandra, Khoury, Samia J., Slee, Mark, Turkoglu, Recai, Hodgkinson, Suzanne, John, Nevin, Maimone, Davide, Sa, Maria Jose, van Pesch, Vincent, Gerlach, Oliver, Laureys, Guy, Van Hijfte, Liesbeth, Karabudak, Rana, Spitaleri, Daniele, Csepany, Tunde, Gouider, Riadh, Castillo-Triviño, Tamara, Taylor, Bruce, Sharrack, Basil, Snowden, John A., Horakova, Dana, Buzzard, Katherine, Terzi, Murat, Prat, Alexandre, Girard, Marc, Grammond, Pierre, Barnett, Michael, Stewart, Grace, Onofrj, Marco, Izquierdo, Guillermo, Eichau, Sara, Grand'Maison, Francois, Prevost, Julie, Van Wijmeersch, Bart, Amato, Maria Pia, Shaygannejad, Vahid, Boz, Cavit, Bolaños, Ricardo Fernandez, Soysal, Aysun, Ramo-Tello, Cristina, Solaro, Claudio, Gobbi, Claudio, Cabrera-Gomez, Jose Antonio, Roullet, Etienne, Zwanikken, Cees, Den braber-Moerland, Leontien, Deri, Norma, Saladino, Maria Laura, Cristiano, Edgardo, Rojas, Juan Ignacio, Vrech, Carlos, Shaw, Cameron, Shuey, Neil, Boggild, Mike, Tan, Ik Lin, Hardy, Todd, Decoo, Danny, Moore, Fraser, Oh, Jiwon, Lalive, Patrice, Ampapa, Radek, Petersen, Thor, Oreja-Guevara, Celia, Perez Sempere, Angel, Dominguez, Jose Andres, Besora, Sarah, Hughes, Stella, Gray, Orla, Grigoriadis, Nikolaos, Piroska, Imre, Rozsa, Csilla, Kasa, Krisztian, Simo, Magdolna, Kovacs, Krisztina, Sas, Attila, Dobos, Eniko, Rajda, Cecilia, McGuigan, Chris, Mason, Deborah, Schepel, Jan, Alkhaboori, Jabir, Rio, Maria Edite, Mihaela, Simu, Al-Harbi, Talal, Altintas, Ayse, Kister, Ilya, Marriott, Mark, Kilpatrick, Trevor, King, John, Nguyen, Ai-Lan, Dwyer, Chris, Monif, Mastura, Taylor, Lisa, Diamanti, Matteo, Chisari, Clara, Toscano, Simona, Salvatore, Lo Fermo, Larochelle, Catherine, De Luca, Giovanna, Di Tommaso, Valeria, Travaglini, Daniela, Pietrolongo, Erika, di Ioia, Maria, Farina, Deborah, Mancinelli, Luca, Hupperts, Raymond, Olascoaga, Javier, Saiz, Albert, Zivadinov, Robert, Benedict, Ralph, Verheul, Freek, Fabis-Pedrini, Marzena, Mrabet, Saloua, Garber, Justin, Sanchez-Menoyo, Jose Luis, Aguera-Morales, Eduardo, Blanco, Yolanda, Al-Asmi, Abdullah, Weinstock-Guttman, Bianca, Fragoso, Yara, de Gans, Koen, and Kermode, Allan
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Human medicine - Abstract
you are agreeing to our Cookie Policy | Continue JAMA Network HomeJAMA Neurology This Issue Views 2,357 Citations 0 60 Full Text Share Comment Original Investigation May 15, 2023 Comparative Effectiveness of Autologous Hematopoietic Stem Cell Transplant vs Fingolimod, Natalizumab, and Ocrelizumab in Highly Active Relapsing-Remitting Multiple Sclerosis Tomas Kalincik, MD, PhD1,2; Sifat Sharmin, PhD1,2; Izanne Roos, MBChB, PhD1,2; Mark S. Freedman, MD3; Harold Atkins, MD4; Joachim Burman, MD, PhD5; Jennifer Massey, MBBS, PhD6,7; Ian Sutton, MBBS, PhD6,8; Barbara Withers, MD, PhD7,9; Richard Macdonell, MD, PhD10,11; Andrew Grigg, MD, PhD11,12; Øivind Torkildsen, MD, PhD13; Lars Bo, MD, PhD13; Anne Kristine Lehmann, MD, PhD14; Eva Kubala Havrdova, MD, PhD15; Eva Krasulova, MD, PhD15; Marek Trněný, MD, PhD16; Tomas Kozak, MD, PhD17; Anneke van der Walt, MBBS, PhD18,19; Helmut Butzkueven, MBBS, PhD18,19; Pamela McCombe, MBBS20,21; Olga Skibina, MBBS18,22,23; Jeannette Lechner-Scott, MD, PhD24,25; Barbara Willekens, MD, PhD26,27; Elisabetta Cartechini, MD28; Serkan Ozakbas, MD29; Raed Alroughani, MD30; Jens Kuhle, MD, PhD31; Francesco Patti, MD32,33; Pierre Duquette, MD34; Alessandra Lugaresi, MD, PhD35,36; Samia J. Khoury, MD, PhD37; Mark Slee, MD, PhD38; Recai Turkoglu, MD39; Suzanne Hodgkinson, MD40; Nevin John, MD, PhD41,42; Davide Maimone, MD43; Maria Jose Sa, MD44; Vincent van Pesch, MD, PhD45,46; Oliver Gerlach, MD, PhD47,48; Guy Laureys, MD49; Liesbeth Van Hijfte, MD49; Rana Karabudak, MD50; Daniele Spitaleri, MD51; Tunde Csepany, MD, PhD52; Riadh Gouider, MD53,54; Tamara Castillo-Triviño, MD55; Bruce Taylor, MD, PhD56,57; Basil Sharrack, MD, PhD58; John A. Snowden, MD, PhD59; and the MSBase Study Group Collaborators; and the MSBase Study Group Authors Author Affiliations JAMA Neurol. 2023;80(7):702-713. doi:10.1001/jamaneurol.2023.1184 editorial comment iconEditorial Comment Key Points Question What is the comparative effectiveness of autologous hematopoietic stem cell transplant (AHSCT) vs individual most potent disease-modifying therapies for relapsing-remitting multiple sclerosis (MS), such as natalizumab or ocrelizumab? Findings In this observational comparative effectiveness study of 4915 individuals using a composite cohort from specialized MS centers and the MSBase international registry, the effectiveness of AHSCT was compared with 1 medium-efficacy and 2 high-efficacy disease-modifying therapies (fingolimod, natalizumab, and ocrelizumab) in patients with relapsing-remitting MS, high frequency of relapses, and moderate disability. Over 5 years, AHSCT was associated with substantially lower relapse rate than fingolimod and marginally lower relapse rate than natalizumab and was also associated with a higher rate of recovery from disability compared with fingolimod and natalizumab, but no evidence of difference in clinical outcomes between AHSCT and ocrelizumab was found at 3-year follow-up. Meaning The results indicate that in relapsing-remitting MS, the clinical effectiveness of AHSCT is considerably superior to fingolimod and marginally superior to natalizumab. Abstract Importance Autologous hematopoietic stem cell transplant (AHSCT) is available for treatment of highly active multiple sclerosis (MS). Objective To compare the effectiveness of AHSCT vs fingolimod, natalizumab, and ocrelizumab in relapsing-remitting MS by emulating pairwise trials. Design, Setting, and Participants This comparative treatment effectiveness study included 6 specialist MS centers with AHSCT programs and international MSBase registry between 2006 and 2021. The study included patients with relapsing-remitting MS treated with AHSCT, fingolimod, natalizumab, or ocrelizumab with 2 or more years study follow-up including 2 or more disability assessments. Patients were matched on a propensity score derived from clinical and demographic characteristics. Exposure AHSCT vs fingolimod, natalizumab, or ocrelizumab. Main outcomes Pairwise-censored groups were compared on annualized relapse rates (ARR) and freedom from relapses and 6-month confirmed Expanded Disability Status Scale (EDSS) score worsening and improvement. Results Of 4915 individuals, 167 were treated with AHSCT; 2558, fingolimod; 1490, natalizumab; and 700, ocrelizumab. The prematch AHSCT cohort was younger and with greater disability than the fingolimod, natalizumab, and ocrelizumab cohorts; the matched groups were closely aligned. The proportion of women ranged from 65% to 70%, and the mean (SD) age ranged from 35.3 (9.4) to 37.1 (10.6) years. The mean (SD) disease duration ranged from 7.9 (5.6) to 8.7 (5.4) years, EDSS score ranged from 3.5 (1.6) to 3.9 (1.9), and frequency of relapses ranged from 0.77 (0.94) to 0.86 (0.89) in the preceding year. Compared with the fingolimod group (769 [30.0%]), AHSCT (144 [86.2%]) was associated with fewer relapses (ARR: mean [SD], 0.09 [0.30] vs 0.20 [0.44]), similar risk of disability worsening (hazard ratio [HR], 1.70; 95% CI, 0.91-3.17), and higher chance of disability improvement (HR, 2.70; 95% CI, 1.71-4.26) over 5 years. Compared with natalizumab (730 [49.0%]), AHSCT (146 [87.4%]) was associated with marginally lower ARR (mean [SD], 0.08 [0.31] vs 0.10 [0.34]), similar risk of disability worsening (HR, 1.06; 95% CI, 0.54-2.09), and higher chance of disability improvement (HR, 2.68; 95% CI, 1.72-4.18) over 5 years. AHSCT (110 [65.9%]) and ocrelizumab (343 [49.0%]) were associated with similar ARR (mean [SD], 0.09 [0.34] vs 0.06 [0.32]), disability worsening (HR, 1.77; 95% CI, 0.61-5.08), and disability improvement (HR, 1.37; 95% CI, 0.66-2.82) over 3 years. AHSCT-related mortality occurred in 1 of 159 patients (0.6%). Conclusion In this study, the association of AHSCT with preventing relapses and facilitating recovery from disability was considerably superior to fingolimod and marginally superior to natalizumab. This study did not find evidence for difference in the effectiveness of AHSCT and ocrelizumab over a shorter available follow-up time.
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- 2023
11. Efficacy of fingolimod and interferon beta-1b on cognitive, MRI, and clinical outcomes in relapsing–remitting multiple sclerosis: an 18-month, open-label, rater-blinded, randomised, multicentre study (the GOLDEN study)
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Comi, Giancarlo, Patti, Francesco, Rocca, Maria Assunta, Mattioli, Flavia Caterina, Amato, Maria Pia, Gallo, Paolo, Centonze, Diego, Pozzilli, Carlo, Saccà, Francesco, Bergh, Florian Then, Bartezaghi, Marta, Turrini, Renato, Filippi, Massimo, Patti, Francesco, Chisari, Clara Grazia, Marfia, Girolama Alessandra, Centonze, Diego, Morra, Vincenzo Brescia, Capra, Ruggero, Pozzilli, Carlo, Bianchi, Valentina, Ghezzi, Angelo, Roscio, Marco, Comi, Giancarlo, Sangalli, Francesca, Pietrolongo, Erika, Francia, Ada, Danni, Maura Chiara, Nocentini, Ugo, Bramanti, Placido, Tedeschi, Gioacchino, Maimone, Davide, Grimaldi, Luigi Maria Edoardo, Scarpini, Elio Angelo, Uccelli, Antonio, Amato, Maria Pia, Rottoli, Mariarosa, Ruggieri, Stefano, Trojano, Maria, Bergamaschi, Roberto, Bergh, Florian Then, Buttmann, Mathias, Rieckmann, Peter, Safavi, Ali, and For the Golden Study Group
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- 2017
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12. Illness Perception and Well-Being Among Persons with Multiple Sclerosis and Their Caregivers
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Bassi, Marta, Falautano, Monica, Cilia, Sabina, Goretti, Benedetta, Grobberio, Monica, Pattini, Marianna, Pietrolongo, Erika, Viterbo, Rosa Gemma, Amato, Maria Pia, Benin, Miriam, Lugaresi, Alessandra, Minacapelli, Eleonora, Montanari, Enrico, Patti, Francesco, Trojano, Maria, and Delle Fave, Antonella
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- 2016
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13. Assessing subjective quality of life domains after multiple sclerosis diagnosis disclosure
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Mattarozzi, Katia, Casini, Federica, Baldin, Elisa, Baldini, Martina, Lugaresi, Alessandra, Milani, Paola, Pietrolongo, Erika, Gajofatto, Alberto, Leone, Maurizio, Riise, Trond, Vignatelli, Luca, and DʼAlessandro, Roberto
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- 2016
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14. Association of Initial Disease-Modifying Therapy With Later Conversion to Secondary Progressive Multiple Sclerosis
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Wilkins, Alastair, Slee, Mark, TERZİ, MURAT, Grand'Maison, Francois, Ferraro, Diana, Sola, Patrizia, Van Pesch, Vincent, McCombe, Pamela, Hupperts, Raymond, Alroughani, Raed, Grammond, Pierre, Bergamaschi, Roberto, Lugaresi, Alessandra, Shaygannejad, Vahid, Pucci, Eugenio, Granella, Franco, Jokubaitis, Vilija, Pearson, Owen R., Ziemssen, Tjalf, Hutchinson, Michael, McGuigan, Christopher, Butzkueven, Helmut, Kalincik, Tomas, Onofrj, Marco, Trojano, Maria, Duquette, Pierre, Girard, Marc, Prat, Alexandre, Izquierdo, Guillermo, Havrdova, Eva, Horakova, Dana, Zwanikken, Cees, Soysal, Aysun, Yamout, Bassem, Piroska, Imre, McDonnell, Gavin, Moore, Fraser, Butler, Ernest, De Luca, Giovanna, Di Tommaso, Valeria, Travaglini, Daniela, Pietrolongo, Erika, di Ioia, Maria, Farina, Deborah, Mancinelli, Luca, Hodgkinson, Suzanne, Oreja-Guevara, Celia, BOZ, CAVİT, Prevost, Julie, Olascoaga, Javier, Van Wijmeersch, Bart, Barnett, Michael, Verheul, Freek, Rojas, Juan Ingacio, Spitaleri, Daniele, Rio, Maria Edite, Taylor, Bruce, Luis Sanchez-Menoyo, Jose, Ramo-Tello, Cristina, Solaro, Claudio, Csepany, Tunde, Iuliano, Gerardo, Skibina, Olga, Petersen, Thor, Bolanos, Ricardo Fernandez, Sidhom, Youssef, Riadh, Riadh, Vucic, Steve, Macdonell, Richard, Sempere, Angel Perez, Simo, Magdolna, Kister, Ilya, Shuey, Neil, Radek, Radek, Dominguez, Jose Andres, Pia Amato, Maria, Saladino, Maria Laura, Kermode, Allan, Brown, J. William L., Coles, Alasdair, Lechner-Scott, Jeannette, Willis, Mark, Rice, Claire, Scolding, Neil, Flechter, Schlomo, Harding, Katharine, Jones, Joanne, Robertson, Neil, Hughes, Stella, ÖZAKBAŞ, SERKAN, Brown, J William L, Coles, Alasdair, Horakova, Dana, Havrdova, Eva, Izquierdo, Guillermo, Prat, Alexandre, Girard, Marc, Duquette, Pierre, Trojano, Maria, Lugaresi, Alessandra, Bergamaschi, Roberto, Grammond, Pierre, Alroughani, Raed, Hupperts, Raymond, McCombe, Pamela, Van Pesch, Vincent, Sola, Patrizia, Ferraro, Diana, Grand'Maison, Francoi, Terzi, Murat, Lechner-Scott, Jeannette, Flechter, Schlomo, Slee, Mark, Shaygannejad, Vahid, Pucci, Eugenio, Granella, Franco, Jokubaitis, Vilija, Willis, Mark, Rice, Claire, Scolding, Neil, Wilkins, Alastair, Pearson, Owen R, Ziemssen, Tjalf, Hutchinson, Michael, Harding, Katharine, Jones, Joanne, McGuigan, Christopher, Butzkueven, Helmut, Kalincik, Toma, Robertson, Neil, Brown, Will [0000-0002-7737-5834], Coles, Alasdair [0000-0003-4738-0760], Jones, Joanna [0000-0003-4974-1371], Apollo - University of Cambridge Repository, DIPARTIMENTO DI SCIENZE BIOMEDICHE E NEUROMOTORIE, UCL - SSS/IONS - Institute of NeuroScience, UCL - SSS/IONS/CEMO - Pôle Cellulaire et moléculaire, UCL - (SLuc) Service de neurologie, Klinische Neurowetenschappen, MUMC+: MA Med Staf Spec Neurologie (9), RS: MHeNs - R1 - Cognitive Neuropsychiatry and Clinical Neuroscience, and OMÜ
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Male ,INTERFERON-BETA ,MULTICENTER ,Interferon-beta/therapeutic use ,multiple sclerosis ,01 natural sciences ,Cohort Studies ,0302 clinical medicine ,Natalizumab ,030212 general & internal medicine ,Alemtuzumab ,Original Investigation ,GLATIRAMER ACETATE ,NATALIZUMAB ,Natalizumab/therapeutic use ,OUTCOMES ,treatment ,ALEMTUZUMAB ,Absolute risk reduction ,General Medicine ,Immunologic Factors/therapeutic use ,Fingolimod ,TIME ,Disease Progression ,Female ,Immunosuppressive Agents ,medicine.drug ,Cohort study ,Adult ,medicine.medical_specialty ,Alemtuzumab/therapeutic use ,Lower risk ,Time-to-Treatment ,03 medical and health sciences ,Multiple Sclerosis, Relapsing-Remitting ,Internal medicine ,medicine ,Humans ,Immunologic Factors ,0101 mathematics ,Glatiramer acetate ,Fingolimod Hydrochloride/therapeutic use ,business.industry ,Fingolimod Hydrochloride ,Multiple sclerosis ,DISABILITY ,010102 general mathematics ,Glatiramer Acetate ,Interferon-beta ,Multiple Sclerosis, Relapsing-Remitting/drug therapy ,medicine.disease ,FINGOLIMOD ,Immunosuppressive Agents/therapeutic use ,multiple sclerosis, progression, treatment ,progression ,business ,Glatiramer Acetate/therapeutic use - Abstract
none 40 si his study was financially supported by National Health and Medical Research Council of Australia (fellowships 1140766 and 1080518, project grants 1129189 and 1083539), the University of Melbourne (Faculty of Medicine, Dentistry and Health Sciences research fellowship), a Next Generation Fellowship funded by the Grand Charity of the Freemason’s (recipient JWLB), and the MSBase 2017 Fellowship (recipient JWLB). Alemtuzumab studies done in Cambridge were supported by the NIHR Cambridge Biomedical Research Centre and the MS Society UK. The MSBase Foundation is a not-for-profit organization that receives support from Roche, Merck, Biogen, Novartis, Bayer Schering, Sanofi Genzyme, and Teva. IMPORTANCE: Within 2 decades of onset, 80% of untreated patients with relapsing-remitting multiple sclerosis (MS) convert to a phase of irreversible disability accrual termed secondary progressive MS. The association between disease-modifying treatments (DMTs), and this conversion has rarely been studied and never using a validated definition. OBJECTIVE: To determine the association between the use, the type of, and the timing of DMTs with the risk of conversion to secondary progressive MS diagnosed with a validated definition. DESIGN, SETTING, AND PARTICIPANTS: Cohort study with prospective data from 68 neurology centers in 21 countries examining patients with relapsing-remitting MS commencing DMTs (or clinical monitoring) between 1988-2012 with minimum 4 years' follow-up. EXPOSURES: The use, type, and timing of the following DMTs: interferon beta, glatiramer acetate, fingolimod, natalizumab, or alemtuzumab. After propensity-score matching, 1555 patients were included (last follow-up, February 14, 2017). MAIN OUTCOME AND MEASURE: Conversion to objectively defined secondary progressive MS. RESULTS: Of the 1555 patients, 1123 were female (mean baseline age, 35 years [SD, 10]). Patients initially treated with glatiramer acetate or interferon beta had a lower hazard of conversion to secondary progressive MS than matched untreated patients (HR, 0.71; 95% CI, 0.61-0.81; P
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- 2019
15. Efficacy of fingolimod and interferon beta-1b on cognitive, MRI, and clinical outcomes in relapsingâremitting multiple sclerosis: an 18-month, open-label, rater-blinded, randomised, multicentre study (the GOLDEN study)
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Comi, Giancarlo, Patti, Francesco, Rocca, Maria Assunta, Mattioli, Flavia Caterina, Amato, Maria Pia, Gallo, Paolo, Centonze, Diego, Pozzilli, Carlo, Saccà, Francesco, Bergh, Florian Then, Bartezaghi, Marta, Turrini, Renato, Filippi, Massimo, Chisari, Clara Grazia, Marfia, Girolama Alessandra, Morra, Vincenzo Brescia, Capra, Ruggero, Bianchi, Valentina, Ghezzi, Angelo, Roscio, Marco, Sangalli, Francesca, Pietrolongo, Erika, Francia, Ada, Danni, Maura Chiara, Nocentini, Ugo, Bramanti, Placido, Tedeschi, Gioacchino, Maimone, Davide, Grimaldi, Luigi Maria Edoardo, Scarpini, Elio Angelo, Uccelli, Antonio, Rottoli, Mariarosa, Ruggieri, Stefano, Trojano, Maria, Bergamaschi, Roberto, Buttmann, Mathias, Rieckmann, Peter, Safavi, Ali, Comi, Giancarlo, Patti, Francesco, Rocca, Maria Assunta, Mattioli, Flavia Caterina, Amato, Maria Pia, Gallo, Paolo, Centonze, Diego, Pozzilli, Carlo, Saccã , Francesco, Bergh, Florian Then, Bartezaghi, Marta, Turrini, Renato, Filippi, Massimo, Chisari, Clara Grazia, Marfia, Girolama Alessandra, Morra, Vincenzo Brescia, Capra, Ruggero, Bianchi, Valentina, Ghezzi, Angelo, Roscio, Marco, Sangalli, Francesca, Pietrolongo, Erika, Francia, Ada, Danni, Maura Chiara, Nocentini, Ugo, Bramanti, Placido, Tedeschi, Gioacchino, Maimone, Davide, Grimaldi, Luigi Maria Edoardo, Scarpini, Elio Angelo, Uccelli, Antonio, Rottoli, Mariarosa, Ruggieri, Stefano, Trojano, Maria, Bergamaschi, Roberto, Buttmann, Mathia, Rieckmann, Peter, Safavi, Ali, Sacca, Francesco, on beahlf of the Golden Study, Group, and Saccà, Francesco
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0301 basic medicine ,Male ,Brain atrophy ,Pilot Projects ,Relapsing-Remitting ,Neuropsychological Tests ,law.invention ,Efficacy ,Brief repeatable battery test ,Disability Evaluation ,Electrocardiography ,Executive Function ,0302 clinical medicine ,Randomized controlled trial ,law ,Delis–Kaplan executive function test ,Longitudinal Studies ,Original Communication ,Depression ,Statistics ,Cognitive impairment ,Fingolimod ,Interferon beta-1b ,Neurology ,Neurology (clinical) ,Middle Aged ,Magnetic Resonance Imaging ,Adolescent ,Adult ,Female ,Fingolimod Hydrochloride ,Humans ,Immunologic Factors ,Statistics, Nonparametric ,Treatment Outcome ,Young Adult ,Cognition Disorders ,Multiple Sclerosis, Relapsing-Remitting ,Tolerability ,Settore MED/26 - Neurologia ,DelisâKaplan executive function test ,medicine.drug ,medicine.medical_specialty ,Multiple Sclerosis ,Settore MED/26 ,03 medical and health sciences ,Internal medicine ,medicine ,Nonparametric ,Delisâ Kaplan executive function test ,Expanded Disability Status Scale ,business.industry ,Multiple sclerosis ,medicine.disease ,030104 developmental biology ,Physical therapy ,business ,030217 neurology & neurosurgery ,Delis–Kaplan Executive Function System - Abstract
Cognitive impairment (CI) affects 40â65% of multiple sclerosis (MS) patients. This study attempted evaluating the effects of fingolimod and interferon beta-1b (IFN β-1b) on CI progression, magnetic resonance imaging (MRI) and clinical outcomes in relapsingâremitting MS (RRMS) patients over 18Âmonths. The GOLDEN study was a pilot study including RRMS patients with CI randomised (2:1) to fingolimod (0.5Âmg daily)/IFN β-1b (250µg every other day). CI was assessed via Raoâs Brief Repeatable Battery and DelisâKaplan Executive Function System test. MRI parameters, Expanded Disability Status Scale scores and relapses were measured. Overall, 157 patients were randomised, of whom 30 discontinued the study (fingolimod, 8.49%; IFN β-1b, 41.18%; pÂâ¤Â0.0001). Patients randomised to fingolimod had more severe clinical and MRI disease characteristics at baseline compared with IFN β-1b. At Month (M) 18, both treatment groups showed improvements in all cognitive parameters. At M18, relapse rate, total number and volume of T2/T1 gadolinium-enhancing lesions were higher with IFN β-1b, as well as the percentage brain volume change during the study. Safety and tolerability of both treatments were similar to previous studies. Both treatments showed improvements in cognitive parameters. Fingolimod demonstrated significantly better effects on MRI parameters and relapse rate. Imbalance in baseline characteristics and the drop-out pattern may have favoured IFN β-1b. A longer duration trial may be needed to observe the complete expression of differential effects on CI scales reflecting the between-groups differences on MRI. Although limited in size, the GOLDEN study confirms the favourable benefitârisk profile of fingolimod reported in previous studies.
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- 2017
16. Illness perceptions and psychological adjustment among persons with multiple sclerosis: the mediating role of coping strategies and social support.
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Bassi, Marta, Cilia, Sabina, Falautano, Monica, Grobberio, Monica, Niccolai, Claudia, Pattini, Marianna, Pietrolongo, Erika, Quartuccio, Maria Esmeralda, Viterbo, Rosa Gemma, Allegri, Beatrice, Amato, Maria Pia, Benin, Miriam, De Luca, Giovanna, Gasperini, Claudio, Minacapelli, Eleonora, Patti, Francesco, Trojano, Maria, and Delle Fave, Antonella
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ADAPTABILITY (Personality) ,PSYCHOLOGICAL adaptation ,CONFIDENCE intervals ,STATISTICAL correlation ,MENTAL depression ,EMOTIONS ,MENTAL health ,MULTIPLE sclerosis ,QUESTIONNAIRES ,SATISFACTION ,SOCIAL support ,WELL-being ,CROSS-sectional method ,DATA analysis software ,PATIENTS' attitudes ,DESCRIPTIVE statistics ,ATTITUDES toward illness - Abstract
Purpose: The aim of this study was to test the Common Sense Model of Self-Regulation among persons with multiple sclerosis (MS), hypothesizing direct relations between illness beliefs and psychological adjustment, and indirect relations through coping strategies and social support. Materials and methods: Questionnaires were administered cross-sectionally to 680 participants (M
age =40.1; 64.4% women) recruited in eight MS units to assess illness beliefs, coping strategies, social support, and adjustment indicators including life satisfaction, psychological well-being, mental health, and depression. Multiple mediational analyses were conducted to identify direct and indirect paths connecting illness beliefs to psychological outcomes. Results: Controlling for disability level, significant direct and indirect relationships were observed: Beliefs on illness coherence, personal and treatment control were associated with better adjustment; emotion representations and cyclic timeline with worse adjustment; illness identity, consequences, psychological and chance/bad luck causes with mixed positive and negative outcomes. Notably, findings identified recurrent and unique pathways connecting illness beliefs to the different indicators through meaning- and problem-focused coping strategies, avoidance and social support. Conclusions: The Common Sense Model can represent a useful framework to be tested in rehabilitation programs, jointly addressing illness beliefs and coping resources for the promotion of psychological adjustment among persons with MS. Based on the Common Sense Model, the beliefs held by persons with MS about their illness are related to various aspects of psychological adjustment in multiple ways, both directly and indirectly through engagement in specific coping strategies and perception of social support. Clinicians supporting patients' adjustment may take into account that some illness beliefs were consistently associated with positive adjustment, some with poor adjustment, and some yielded mixed positive and negative results. Some ways in which coping strategies and social support connected illness beliefs to psychological adjustment were specific to the adjustment indicator under consideration including satisfaction with life, psychological well-being, mental health and depression. It may be worth testing comprehensive psychological interventions with the aim of raising awareness of one's illness beliefs, the strategies enacted in response to these beliefs, and the positive and negative relations of these processes with psychological adjustment, encompassing broad areas of individuals' lives and not only health-related issues or depression. [ABSTRACT FROM AUTHOR]- Published
- 2020
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17. Prognostic indicators in pediatric clinically isolated syndrome
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Iaffaldano, Pietro, Simone, Marta, Lucisano, Giuseppe, Ghezzi, Angelo, Coniglio, Gabriella, Brescia Morra, Vincenzo, Salemi, Giuseppe, Patti, Francesco, Lugaresi, Alessandra, Izquierdo, Guillermo, Bergamaschi, Roberto, Cabrera-Gomez, Jose Antonio, Pozzilli, Carlo, Millefiorini, Enrico, Alroughani, Raed, Boz, Cavit, Pucci, Eugenio, Zimatore, Giovanni Bosco, Sola, Patrizia, Lus, Giacomo, Maimone, Davide, Avolio, Carlo, Cocco, Eleonora, Sajedi, Seyed Aidin, Costantino, Gianfranco, Duquette, Pierre, Shaygannejad, Vahid, Petersen, Thor, Fernández Bolaños, Ricardo, Paolicelli, Damiano, Tortorella, Carla, Spelman, Tim, Margari, Lucia, Amato, Maria Pia, Comi, Giancarlo, Butzkueven, Helmut, Trojano, Maria, Spitaleri, Daniele, Rottoli, Maria Rosa, Ardito, Bonaventura, Iuliano, Gerardo, Montanari, Enrico, Granieri, Enrico, Tedeschi, Gioacchino, Bertolotto, Antonio, Granella, Franco, Di Battista, Giancarlo, Gallo, Paolo, Cavalla, Paola, Bellantonio, Paolo, De Robertis, Francesca, Durelli, Luca, Scarpini, Elio, Rezzonico, Monica, Protti, Alessandra, Solaro, Claudio, Corea, Francesco, Bosco, Antonio, Vianello, Marika, Ferrò, Maria Teresa, Balgera, Roberto, Grasso, Roberta, De Luca, Giovanna, Farina, Deboah, Travaglini, Daniela, di Ioia, Maria, Di Tommaso, Valeria, Mancinelli, Luca, Pietrolongo, Erika, Hupperts, Raymond, Rio, Maria Edite, Terzi, Murat, Barnett, Michael, Slee, Mark, Van Pesch, Vincent, Savino, Aldo, Lechner-Scott, Jeannette, Grammond, Pierre, Singhal, Bhim, Zwanikken, Cees, Fiol, Marcela, Patrucco, Liliana, Paine, Mark, Mccombefrom, Pamela, Grand'Maison, Francois, Iaffaldano, Pietro, Simone, Marta, Lucisano, Giuseppe, Ghezzi, Angelo, Coniglio, Gabriella, Brescia Morra, Vincenzo, Salemi, Giuseppe, Patti, Francesco, Lugaresi, Alessandra, Izquierdo, Guillermo, Bergamaschi, Roberto, Cabrera-Gomez, Jose Antonio, Pozzilli, Carlo, Millefiorini, Enrico, Alroughani, Raed, Boz, Cavit, Pucci, Eugenio, Zimatore, Giovanni Bosco, Sola, Patrizia, Lus, Giacomo, Maimone, Davide, Avolio, Carlo, Cocco, Eleonora, Sajedi, Seyed Aidin, Costantino, Gianfranco, Duquette, Pierre, Shaygannejad, Vahid, Petersen, Thor, Fernández Bolaños, Ricardo, Paolicelli, Damiano, Tortorella, Carla, Spelman, Tim, Margari, Lucia, Amato, Maria Pia, Comi, Giancarlo, Butzkueven, Helmut, Trojano, Maria, RS: MHeNs - R1 - Cognitive Neuropsychiatry and Clinical Neuroscience, MUMC+: MA Med Staf Spec Neurologie (9), Klinische Neurowetenschappen, Morra, Vincenzo Brescia, Cabrera Gomez, Jose Antonio, and Bolaños, Ricardo Fernández
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Registrie ,Male ,Multiple Sclerosis ,Adolescent ,Age of Onset ,Child ,Demyelinating Diseases ,Female ,Follow-Up Studies ,Humans ,Prognosis ,Retrospective Studies ,Risk Factors ,Disease Progression ,Registries ,Neurology ,Neurology (clinical) ,Prognosi ,ONSET MULTIPLE-SCLEROSIS ,CHILDHOOD ,CHILDREN ,PARACLINICAL FEATURES ,DISABILITY PROGRESSION ,NO ,Follow-Up Studie ,Retrospective Studie ,prognostic indicators ,Multiple Sclerosi ,pediatric, multiple sclerosis, prognosis, indicators ,OPTIC NEURITIS ,Risk Factor ,Demyelinating Disease ,NATURAL-HISTORY ,multiple sclerosis, clinically isolated syndrome, prognostic indicators ,TRANSVERSE MYELITIS ,clinically isolated syndrome ,INTERFERON BETA-1B ,Settore MED/26 - Neurologia ,FOLLOW-UP ,Human - Abstract
To assess prognostic factors for a second clinical attack and a first disability worsening event in pediatric clinically isolated syndrome (pCIS) suggestive of Multiple Sclerosis (MS) patients. Objective: To assess prognostic factors for a second clinical attack and a first disability-worsening event in pediatric clinically isolated syndrome (pCIS) suggestive of multiple sclerosis (MS) patients. Methods: A cohort of 770 pCIS patients was followed up for at least 10 years. Cox proportional hazard models and Recursive Partitioning and Amalgamation (RECPAM) tree-regression were used to analyze data. Results: In pCIS, female sex and a multifocal onset were risk factors for a second clinical attack (hazard ratio [HR], 95% confidence interval [CI] = 1.28, 1.06â1.55; 1.42, 1.10â1.84, respectively), whereas disease-modifying drug (DMD) exposure reduced this risk (HR, 95% CI = 0.75, 0.60â0.95). After pediatric onset MS (POMS) diagnosis, age at onset younger than 15 years and DMD exposure decreased the risk of a first Expanded Disability Status Scale (EDSS)-worsening event (HR, 95% CI = 0.59, 0.42â0.83; 0.75, 0.71â0.80, respectively), whereas the occurrence of relapse increased this risk (HR, 95% CI = 5.08, 3.46â7.46). An exploratory RECPAM analysis highlighted a significantly higher incidence of a first EDSS-worsening event in patients with multifocal or isolated spinal cord or optic neuritis involvement at onset in comparison to those with an isolated supratentorial or brainstem syndrome. A Cox regression model including RECPAM classes confirmed DMD exposure as the most protective factor against EDSS-worsening events and relapses as the most important risk factor for attaining EDSS worsening. Interpretation: This work represents a step forward in identifying predictors of unfavorable course in pCIS and POMS and supports a protective effect of early DMD treatment in preventing MS development and disability accumulation in this population. Ann Neurol 2017;81:729â739.
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- 2017
18. Conversion to secondary progressive multiple sclerosis: Multistakeholder experiences and needs in Italy.
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Giovannetti, Ambra Mara, Pietrolongo, Erika, Borreani, Claudia, Giordano, Andrea, Schiffmann, Insa, Barabasch, Anna, Heesen, Christoph, and Solari, Alessandra
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MEDICAL personnel , *MULTIPLE sclerosis , *SEMI-structured interviews , *SIGNIFICANT others , *FAILURE mode & effects analysis , *EXTERNALITIES , *NATALIZUMAB - Abstract
Background: Conversion to secondary progressive multiple sclerosis (SPMS) is associated with a relatively poor prognosis, and SPMS is responsible for the majority of the social and economic costs associated with MS. Managing the Transition to SPMS (ManTra) is a mixed methods project conducted in Italy and Germany aimed to set up a user-led resource to empower and improve the quality of life of newly diagnosed SPMS patients. Aims: To assess the experiences and the needs of Italian people who recently converted to SPMS, patient significant others (SOs), neurologists and other health professionals (HPs). Methods: We conducted 15 personal semistructured interviews (PSIs) with SPMS patients who transitioned up to five years, and three focus group meetings (FGMs), one of SPMS SOs, one of neurologists, and one of other HPs. Participants were purposely selected from the three geographic areas of Italy, and varied in terms of gender, education and (for patients) disease severity. PSIs and FGMs were audiorecorded, transcribed and analyzed by two researchers using the framework analysis. Results: One hundred sub-categories were identified, grouped into 13 categories and four themes: 'awareness of the transition', 'communication of the transition', 'dealing with symptoms worsening', and 'needs'. The major unmet needs were collected in four dimensions 'organization and management; 'empowerment training'; 'information'; and 'policies'. Conclusions: Two are the main findings: first, the widespread lack of awareness around the transition; second, the need to improve the quality of the care pathway in the Italian context. It was particularly stressed the need for a holistic and multidisciplinary approach (with patients and SOs as members of the team), the development of an ad hoc plan of follow up visits with easy access to MS specialists' consultation/treatment; specialized training for each stakeholders; more information on SPMS, daily management and changes at policy level. [ABSTRACT FROM AUTHOR]
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- 2020
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19. The caring experience in multiple sclerosis: Caregiving tasks, coping strategies and psychological well‐being.
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Bassi, Marta, Cilia, Sabina, Falautano, Monica, Grobberio, Monica, Negri, Luca, Niccolai, Claudia, Pattini, Marianna, Pietrolongo, Erika, Quartuccio, Maria Esmeralda, Viterbo, Rosa Gemma, Allegri, Beatrice, Amato, Maria Pia, Benin, Miriam, De Luca, Giovanna, Gasperini, Claudio, Minacapelli, Eleonora, Patti, Francesco, Trojano, Maria, and Delle Fave, Antonella
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PSYCHOLOGICAL adaptation ,CAREGIVERS ,CONFIDENCE intervals ,STATISTICAL correlation ,EMOTIONS ,SERVICES for caregivers ,MULTIPLE sclerosis ,QUESTIONNAIRES ,RESEARCH funding ,EMPLOYEES' workload ,ACTIVITIES of daily living ,WELL-being ,BURDEN of care ,CROSS-sectional method ,DATA analysis software ,DESCRIPTIVE statistics ,PSYCHOLOGICAL factors - Abstract
Informal caregivers play a crucial role in supporting persons with multiple sclerosis (MS), a neurodegenerative disease resulting in progressive worsening of physical and cognitive functioning. While research extensively showed that caregiving workload can be perceived as burdensome, little attention was devoted to the relation connecting workload and caregivers' well‐being. Building on previous literature on stress and coping, the aim of this study was to test the mediational role of coping between caregivers' tasks and well‐being. A group of 680 caregivers of persons with MS (M age = 46.45; 51.2% women) was recruited in eight Italian MS centres between June 2015 and December 2016. Caregiving tasks related to basic activities of daily living (ADL), instrumental ADL, psycho‐emotional and social‐practical care were assessed through the Caregiving Tasks in MS Scale; coping strategies (avoidance, criticism and coercion, practical assistance, supportive engagement, positive reframing) were investigated through the Coping with MS Caregiving Inventory; well‐being was evaluated through the Psychological Well‐Being Scales. Analyses substantiated a multi‐mediation model including tasks in basic ADL, psycho‐emotional and social‐practical care, and the coping strategies avoidance, criticism/coercion, supportive engagement, positive reframing. Basic ADL care was negatively related to psychological well‐being through lower use of supportive engagement and positive reframing. By contrast, psycho‐emotional and social‐practical tasks were both negatively and positively related to psychological well‐being, through higher use of avoidance and criticism/coercion as well as supportive engagement and positive reframing. Findings suggest that caregiving tasks are not solely detrimental to well‐being, but they may also provide a positive contribution through the adaptive coping strategies supportive engagement and positive reframing. Findings also highlighted task‐specific areas that could be targeted in intervention in order to effectively lighten burden and promote well‐being among caregivers. [ABSTRACT FROM AUTHOR]
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- 2020
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20. Data of safety in a single-center alemtuzumab treated population
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di Ioia, Maria, Di Stefano, Vincenzo, Farina, Deborah, Di Tommaso, Valeria, Travaglini, Daniela, Pietrolongo, Erika, Sensi, Stefano L., Onofrj, Marco, and De Luca, Giovanna
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- 2020
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21. eMSQOL-29: Prospective validation of the abbreviated, electronic version of MSQOL-54.
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Rosato, Rosalba, Testa, Silvia, Bertolotto, Antonio, Scavelli, Francesco, Giovannetti, Ambra M, Confalonieri, Paolo, Patti, Francesco, Chisari, Clara Grazia, Lugaresi, Alessandra, Pietrolongo, Erika, Grasso, Maria Grazia, Rossi, Ilaria, Toscano, Anna, Loera, Barbara, Giordano, Andrea, and Solari, Alessandra
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CONFIRMATORY factor analysis ,CRONBACH'S alpha ,MULTIPLE sclerosis ,FACTOR structure ,SOCIAL skills - Abstract
Background: We recently devised a shortened version of the 54-item Multiple Sclerosis Quality of Life (MSQOL-54) in paper (MSQOL-29, consisting of 25 items forming 7 subscales and 4 single items, and one filter question for 3 'sexual function' items) and electronic format (eMSQOL-29). Objectives: To prospectively assess eMSQOL-29 psychometric properties, acceptability/equivalence versus MSQOL-29. Methods: Multiple sclerosis (MS) patients (n = 623; Expanded Disability Status Scale (EDSS) range 0.0–9.0) completed eMSQOL-29, Hospital Anxiety and Depression Scale, Functional Assessment of MS (FAMS), European Quality of life Five Dimensions-3L, and received EDSS and Symbol Digit Modalities Test (SDMT). Equivalence versus MSQOL-29 was assessed in 242 patients (randomized cross-over design). Results: ' Sexual function' items were filtered out by 273 patients (47%). No multi-item scale had floor effect, while five had ceiling effect. Cronbach's alpha range was 0.88–0.90. Confirmatory factor analysis showed good overall fit and the two-factor solution for composite scores was confirmed. Criterion validity was sub-optimal for 'cognitive function' (vs SDMT, r = 0.25) and 'social function' (vs FAMS social function, r = 0.38). eMSQOL-29 equivalence was confirmed and its acceptability was good. Conclusion: eMSQOL-29 showed good internal consistency, factor structure and no floor effect, while most subscales had some ceiling effect. Criterion validity was sub-optimal for two subscales. Equivalence and acceptability were good. [ABSTRACT FROM AUTHOR]
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- 2019
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22. Risk-benefit considerations in the treatment of relapsing-remitting multiple sclerosis
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Lugaresi, Alessandra, Travaglini, Pietrolongo,Erika, Pucci,Eugenio, Onofrj,Marco, and di Ioia,Maria
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Neuropsychiatric Disease and Treatment - Abstract
Alessandra Lugaresi,1 Maria di Ioia,1 Daniela Travaglini,1 Erika Pietrolongo,1 Eugenio Pucci,2 Marco Onofrj11Department of Neuroscience and Imaging, University “G d’Annunzio”, Chieti, 2Operative Unit Neurologia ASUR Marche Area Vasta 3, Macerata, ItalyAbstract: Multiple sclerosis (MS) is a chronic demyelinating disease of the central nervous system and mainly affects young adults. Its natural history has changed in recent years with the advent of disease-modifying drugs, which have been available since the early 1990s. The increasing number of first-line and second-line treatment options, together with the variable course of the disease and patient lifestyles and expectations, makes the therapeutic decision a real challenge. The aim of this review is to give a comprehensive overview of the main present and some future drugs for relapsing-remitting MS, including risk-benefit considerations, to enable readers to draw their own conclusions regarding the risk-benefit assessment of personalized treatment strategies, taking into account not only treatment-related but also disease-related risks. We performed a Medline literature search to identify studies on the treatment of MS with risk stratification and risk-benefit considerations. We focused our attention on studies of disease-modifying, immunomodulating, and immunosuppressive drugs, including monoclonal antibodies. Here we offer personal considerations, stemming from long-term experience in the treatment of MS and thorough discussions with other neurologists closely involved in the care of patients with the disease. MS specialists need to know not only the specific risks and benefits of single drugs, but also about drug interactions, either in simultaneous or serial combination therapy, and patient comorbidities, preferences, and fears. This has to be put into perspective, considering also the risks of untreated disease in patients with different clinical and radiological characteristics. There is no single best treatment strategy, but therapy has to be tailored to the patient. This is a time-consuming task, rich in complexity, and influenced by the attitude towards risk on the parts of both the patient and the clinical team. The broader the MS drug market becomes, the harder it will be for the clinician to help the patient decide which therapeutic strategy to opt for.Keywords: safety, efficacy, effectiveness, doctor-patient relationship, shared decision-making
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- 2013
23. Beyond Disease: Happiness, Goals, and Meanings among Persons with Multiple Sclerosis and Their Caregivers.
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Delle Fave, Antonella, Bassi, Marta, Allegri, Beatrice, Cilia, Sabina, Falautano, Monica, Goretti, Benedetta, Grobberio, Monica, Minacapelli, Eleonora, Pattini, Marianna, Pietrolongo, Erika, Valsecchi, Manuela, Amato, Maria Pia, Lugaresi, Alessandra, and Patti, Francesco
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MULTIPLE sclerosis ,HAPPINESS ,DEMYELINATION ,CHRONIC diseases ,CAREGIVERS - Published
- 2017
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24. Managing the transition (ManTra): a resource for persons with secondary progressive multiple sclerosis and their health professionals: protocol for a mixed-methods study in Italy.
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Giovannetti, Ambra Mara, Giordano, Andrea, Pietrolongo, Erika, Confalonieri, Paolo, De Luca, Giovanna, Tortorella, Carla, Trojano, Maria, Messmer Uccelli, Michele, Torri Clerici, Valentina, Gitto, Lara, Köpke, Sascha, Borreani, Claudia, Heesen, Christoph, and Solari, Alessandra
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Introduction 15 years after clinical onset, about 50% of patients with relapsing-remitting multiple sclerosis convert to secondary progressive multiple sclerosis (SPMS). Notwithstanding the importance of this transition, knowledge of the experiences and needs of patients and carers is fragmentary, and targeted interventions are not available. Managing the Transition to SPMS (ManTra) is a mixed methodology project to develop and test a user-led resource for newly diagnosed patients with SPMS. Here, we describe the developmental phase, consisting of a literature review and a new research study involving key stakeholders, in which we construct the resource. Methods and analysis Round 1: The literature review and study will be conducted in parallel. The latter will identify patient needs using a qualitative approach consisting of: personal semistructured interviews with >15 recently diagnosed patients with SPMS; three focus group meetings (one with significant others of patients, one with neurologists and one with other health professionals caring for patients with SPMS). An online survey (>200 recently diagnosed Italian patients with SPMS) will follow to verify needs in a larger independent sample. An expert panel will outline a set of candidate resources/interventions that aim to satisfy the needs thus identified. Round 2: Consensus on the final resource will be obtained in a 1-day meeting of recently diagnosed patients with SPMS, significant others, health professionals and other stakeholders, using the nominal group technique. The expert panel will refine the resource, identify the outcome measures to assess its efficacy and ascertain the most suitable comparator (ManTra Phase 2, not part of this protocol). Ethics and dissemination The study protocol was approved by the ethics committees of each of the involved centres: Foundation IRCCS Neurological Institute C Besta, Milan ; G D'Annunzio University of Chieti-Pescara and the Aldo Moro University of Bari. The results will be published in peer-reviewed journals, presented at conferences and a lay summary sent to participants. [ABSTRACT FROM AUTHOR]
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- 2017
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25. Simultaneous early-onset severe autoimmune hemolytic anemia and albuminuria during alemtuzumab treatment for multiple sclerosis.
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di Ioia, Maria, Farina, Deborah, di Tommaso, Valeria, Travaglini, Daniela, Pietrolongo, Erika, Onofrj, Marco, and de Luca, Giovanna
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ALEMTUZUMAB ,MULTIPLE sclerosis ,AUTOIMMUNE diseases ,THROMBOCYTOPENIA ,KIDNEY diseases - Abstract
Background: Alemtuzumab, approved for multiple sclerosis (MS), can cause secondary autoimmune adverse events including thyroid disorders, immune thrombocytopenia (ITP), and glomerular nephropathies. Non-ITP autoimmune cytopenias are rarely reported. Objective: To report a case of autoimmune hemolytic anemia (AIHA) and nephropathy in a MS patient treated with alemtuzumab. Case report: A 34-year-old man with MS developed albuminuria and AIHA after the first and only alemtuzumab treatment, with positive Coombs’ direct and indirect tests and IgG autoantibodies. Both AIHA and nephropathy resolved 1 month after treatment with steroids and intravenous immunoglobulins. Conclusion: Our report adds to literature on AIHA and nephropathy after alemtuzumab treatment and suggests to add Coombs’ tests to the screening panel required for alemtuzumab treatment. [ABSTRACT FROM AUTHOR]
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- 2018
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26. Patient Expression of Emotions and Neurologist Responses in First Multiple Sclerosis Consultations.
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Del Piccolo, Lidia, Pietrolongo, Erika, Radice, Davide, Tortorella, Carla, Confalonieri, Paolo, Pugliatti, Maura, Lugaresi, Alessandra, Giordano, Andrea, Heesen, Christoph, Solari, Alessandra, and null, null
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MULTIPLE sclerosis treatment , *SELF-expression , *MULTIPLE sclerosis , *NEUROLOGISTS , *PHYSICIAN-patient relations , *PSYCHOLOGY , *PATIENTS - Abstract
Background: Anxiety and depression are common in people with multiple sclerosis (MS), but data on emotional communication during MS consultations are lacking. We assessed patient expressions of emotion and neurologist responses during first-ever MS consultations using the Verona Coding Definitions of Emotional Sequences (VR-CoDES). Methods: We applied VR-CoDES to recordings/transcripts of 88 outpatient consultations (10 neurologists, four MS Italian centers). Before consultation, patients completed the Hospital Anxiety and Depression Scale (HADS). Multilevel sequential analysis was performed on the number of cues/concerns expressed by patients, and the proportion of reduce space responses by neurologists. Results: Patients expressed 492 cues and 45 concerns (median 4 cues and 1 concern per consultation). The commonest cues were verbal hints of hidden worries (cue type b, 41%) and references to stressful life events (type d, 26%). Variables independently associated with number of cues/concerns were: anxiety (HADS-Anxiety score >8) (incidence risk ratio, IRR 1.08, 95% CI 1.06-1.09; p<0.001); patient age (IRR 0.98, 95% CI 0.98-0.99; p<0.001); neurologist age (IRR 0.94, 95% CI 0.92-0.96; p=0.03); and second opinion consultation (IRR 0.72, 95% CI 0.60-0.86; p=0.007). Neurologists reacted to patient emotions by reducing space (changing subject, taking no notice, giving medical advice) for 58% of cues and 76% of concerns. Anxiety was the only variable significantly associated with ‘reduce space’ responses (odds ratio 2.17, 95% CI 1.32-3.57; p=0.003). Conclusions: Patient emotional expressions varied widely, but VR-CoDES cues b and d were expressed most often. Patient anxiety was directly associated with emotional expressions; older age of patients and neurologists, and second opinion consultations were inversely associated with patient emotional expression. In over 50% of instances, neurologists responded to these expressions by reducing space, more so in anxious patients. These findings suggest that neurologists need to improve their skills in dealing with patient emotions. [ABSTRACT FROM AUTHOR]
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- 2015
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27. Unmet Needs of People with Severe Multiple Sclerosis and Their Carers: Qualitative Findings for a Home-Based Intervention.
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Borreani, Claudia, Bianchi, Elisabetta, Pietrolongo, Erika, Rossi, Ilaria, Cilia, Sabina, Giuntoli, Miranda, Giordano, Andrea, Confalonieri, Paolo, Lugaresi, Alessandra, Patti, Francesco, Grasso, Maria Grazia, de Carvalho, Laura Lopes, Palmisano, Lucia, Zaratin, Paola, Battaglia, Mario Alberto, and Solari, Alessandra
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MULTIPLE sclerosis ,STAKEHOLDERS ,DISEASE progression ,PALLIATIVE treatment ,HOME care services - Abstract
Background: Few data on services for people with severe multiple sclerosis (MS) are available. The Palliative Network for Severely Affected Adults with MS in Italy (PeNSAMI) developed a home palliative care program for MS patients and carers, preceded by a literature review and qualitative study (here reported). Objective: To identify unmet needs of people with severe MS living at home by qualitative research involving key stakeholders, and theorize broad areas of intervention to meet those needs. Method: Data were collected from: at least 10 personal interviews with adults with severe MS (primary/secondary progressive, EDSS≥8.0); three focus group meetings (FGs) of carers of people with severe MS; and two FGs of health professionals (HPs). Grounded theory guided the analysis of interview and FG transcripts, from which the areas of intervention were theorized. Results: Between October 2012 and May 2013, 22 MS patients, 30 carers and 18 HPs participated. Forty-eight needs themes were identified, grouped into 14 categories and four domains. Seven, highly interdependent intervention areas were theorized. Patients had difficulties expressing needs; experiences of burden and loneliness were prominent, chiefly in dysfunctional, less affluent families, and among parent carers. Needs differed across Italy with requirements for information and access to services highest in the South. All participants voiced a strong need for qualified personnel and care coordination in day-to-day home care. Personal hygiene emerged as crucial, as did the need for a supportive network and preservation of patient/carer roles within family and community. Conclusions: Unmet needs transcended medical issues and embraced organizational and psychosocial themes, as well as health policies. The high interdependence of the seven intervention areas theorized is in line with the multifaceted approach of palliative care. At variance with typical palliative contexts, coping with disability rather than end-of-life was a major concern of patients and carers. [ABSTRACT FROM AUTHOR]
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- 2014
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28. Role Preferences of People with Multiple Sclerosis: Image-Revised, Computerized Self-Administered Version of the Control Preference Scale.
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Solari, Alessandra, Giordano, Andrea, Kasper, Jurgen, Drulovic, Jelena, van Nunen, An, Vahter, Liina, Viala, Frederique, Pietrolongo, Erika, Pugliatti, Maura, Antozzi, Carlo, Radice, Davide, Köpke, Sascha, and Heesen, Christoph
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MULTIPLE sclerosis treatment ,FEEDBACK control systems ,DRUG administration ,MEDICAL statistics ,SCIENTIFIC observation ,EPIDEMIOLOGY - Abstract
Background: The Control Preference Scale (CPS) is the most frequently used measure of patients’ preferred roles in treatment decisions. We revised the original CPS and developed a new computerized patient self-administered version (eCPS). We used the eCPS to assess role preferences, and their determinants, in Italian and German people with multiple sclerosis (MS). Methods: New cartoons were produced, based on MS health professional and patient input/feedback and previous findings, and pilot tested on 26 Italian and German MS patients. eCPS acceptability and reliability (weighted kappa statistic, wK) in comparison to the original tool, was determined in 92 MS patients who received both CPS versions in random order. Results: The new cartoons were well accepted and easily interpreted by patients, who reported they based their choices mainly on the text and considered the images of secondary importance. eCPS reliability was moderate (wK 0.53, 95% confidence interval [CI] 0.40–0.65) and similar to the test-retest reliability of face-to-face administration assessed in a previous publication (wK 0.65, 95% CI 0.45–0.81). Higher education (odds ratio [OR] 3.74, 95% CI 1.00–14.05) and German nationality (OR 10.30, 95% CI 3.10–34.15) were associated with preference for an active role in the logistic model. Conclusions: The newly devised eCPS was well received and considered easy to use by MS patients. Reliability was in line with that of the original version. Role preference appears affected by cultural characteristics and (borderline statistical significance) education. [ABSTRACT FROM AUTHOR]
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- 2013
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29. Decision-Making in Multiple Sclerosis Consultations in Italy: Third Observer and Patient Assessments.
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Pietrolongo, Erika, Giordano, Andrea, Kleinefeld, Monica, Confalonieri, Paolo, Lugaresi, Alessandra, Tortorella, Carla, Pugliatti, Maura, Radice, Davide, Goss, Claudia, Heesen, Christoph, and Solari, Alessandra
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- *
MULTIPLE sclerosis diagnosis , *DECISION making , *MEDICAL needs assessment , *QUALITY of life , *EVIDENCE-based medicine , *PUBLIC health , *CLINICAL epidemiology - Abstract
Objective: To assess decision-making in multiple sclerosis (MS) from third observer and patient perspectives. Method: Audio recordings of first-ever consultations with a participating physician (88 outpatients, 10 physicians) at four tertiary MS care clinics in Italy, were rated by a third observer using the Observing Patient Involvement in Shared Decision Making (OPTION) and by patients using the Perceived Involvement in Care Scale (PICS). Results: Mean patient age was 37.5, 66% were women, 72% had MS, and 28% had possible MS or other disease. Mean PICS subscale scores (range 0 poor, 100 best possible) were 71.9 (SD 24.3) for "physician facilitation" (PICS-F); 74.6 (SD 22.9) for "patient information exchange" (PICS-I); and only 22.5 (SD 16.2) for "patient decision making" (PICS-DM). Mean OPTION total score (0 poor, 100 best possible) was 29.6 (SD 10.3). Poorest OPTION scores were found for items assessing “preferred patient approach to receiving information” and “preferred patient level of involvement.” Highest scores were for “clinician drawing attention to identified problem”, “indicating need for decision making,” and “need to review the decision.” Consultation time, woman physician, patient-physician gender concordance and PICS-F were associated with higher OPTION total score; older physician and second opinion consultation were associated with lower OPTION score. Conclusions: In line with findings in other settings, our third observer findings indicated limited patient involvement abilities of MS physicians during first consultations. Patient perceptions of physician skills were better than third observers’, although they correlated. Consultations with women physicians, and younger physicians, were associated with higher third observer and patient-based scores. Our findings reveal a need to empower Italian MS physicians with better communication and shared decision-making skills, and show in particular that attention to MS patient preferences for reception of information and involvement in health decisions, need to be improved. [ABSTRACT FROM AUTHOR]
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- 2013
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30. Predicting Sense of Coherence Among Caregiving Partners of Persons With Multiple Sclerosis.
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Bassi, Marta, Negri, Luca, Cilia, Sabina, Falautano, Monica, Grobberio, Monica, Niccolai, Claudia, Pattini, Marianna, Pietrolongo, Erika, Quartuccio, Maria Esmeralda, Viterbo, Rosa Gemma, Allegri, Beatrice, Amato, Maria Pia, Benin, Miriam, De Luca, Giovanna, Gasperini, Claudio, Minacapelli, Eleonora, Patti, Francesco, Trojano, Maria, and Delle Fave, Antonella
- Subjects
- *
MULTIPLE sclerosis , *CAREGIVER attitudes , *FRIENDSHIP , *WELL-being , *SOCIAL support , *CROSS-sectional method , *REGRESSION analysis , *ATTITUDES toward illness , *PEARSON correlation (Statistics) , *PSYCHOLOGY of caregivers , *QUESTIONNAIRES , *DESCRIPTIVE statistics , *FACTOR analysis , *RESEARCH funding , *PSYCHOLOGICAL adaptation , *DATA analysis software , *PSYCHOLOGICAL resilience - Abstract
Purpose/Objective: Within the framework of the Salutogenic Model of Health, this study aimed to investigate sense of coherence among caregiving partners of persons with multiple sclerosis (PwMS), and its relationship with perceived social support and illness beliefs conceived as generalized resistance resources in tension management. Research Method/Design: In this cross-sectional study, 398 caregiving partners of PwMS (Mage = 44.62; 34.9% women and 65.1% men) filled in questionnaires measuring sense of coherence (Sense of Coherence Scale-13), perceived social support from family, friends and significant others (Multidimensional Scale of Perceived Social Support), and illness beliefs (Revised Illness Perception Questionnaire). Hierarchical linear regression analysis was performed to assess the contribution of perceived support and illness beliefs to sense of coherence, controlling for sociodemographic and clinical variables. Results: Perceived support from family and beliefs concerning illness-related emotional representations, illness coherence, and treatment control emerged as significant predictors of participants' sense of coherence. Higher perceived support from family and stronger beliefs in illness coherence and treatment control were associated with higher sense of coherence, while more negative emotional representations were related to lower sense of coherence values. Conclusions/Implications: Findings lend support to the relevance of a salutogenic approach to caregiving in multiple sclerosis. They further suggest the usefulness of interventions that can promote caregivers' sense of coherence and successful coping in life by benefitting from family support, favoring the construction of a coherent illness view, offering comprehensive information and expert guidance on treatment and rehabilitation opportunities, and promoting adaptive management of negative emotions. Impact and Implications: By adopting a salutogenic approach to health, this study provided novel insight into sense of coherence among caregiving partners of persons with multiple sclerosis. Perceived social support and illness beliefs emerged as generalized resistance resources for partners assisting their loved ones. Findings lend support to the need for an integrated view of caregivers' health, encompassing not only negative but also positive aspects of caregiving. The healthcare staff in rehabilitation settings should capitalize on available contextual and personal resources to strengthen caregivers' sense of coherence. Consolidation of support from family, promotion of positive beliefs about illness coherence and confidence in treatment control, as well as the encouragement of awareness and management of illness-related negative emotions, can represent viable strategies to support partners' positive adjustment to their caregiving role and well-being in life. [ABSTRACT FROM AUTHOR]
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- 2023
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31. The coexistence of well- and ill-being in persons with multiple sclerosis, their caregivers and health professionals.
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Bassi, Marta, Falautano, Monica, Cilia, Sabina, Goretti, Benedetta, Grobberio, Monica, Pattini, Marianna, Pietrolongo, Erika, Viterbo, Rosa Gemma, Amato, Maria Pia, Benin, Miriam, Lugaresi, Alessandra, Martinelli, Vittorio, Montanari, Enrico, Patti, Francesco, Trojano, Maria, and Delle Fave, Antonella
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- *
MULTIPLE sclerosis , *MEDICAL personnel , *PSYCHOLOGICAL distress , *QUALITY of life , *WELL-being , *CAREGIVERS , *MENTAL depression , *PATIENTS - Abstract
Abstract: Background: Studies on emotional distress and health-related quality of life (HRQOL) broadened the traditional bio-medical focus in MS research, but little attention was paid to general well-being indicators. Objective: To investigate for the first time both ill-being and well-being dimensions in persons with MS (PwMSs), caregivers and health professionals, in relation to both health and life in general. Methods: A multi-center study assessed participants' depression (Beck Depression Inventory-II), HRQOL (Short Form-36), psychological well-being (Psychological Well-Being Scales), optimal experience (Flow Questionnaire), life satisfaction (Satisfaction with Life Scale), hedonic balance (Positive Affect and Negative Affect Schedule). Demographic and clinical information was also gathered. Results: Overall, 71 PwMSs, 71 caregivers and 26 professionals were enrolled (N =168). Compared to healthy populations, PwMSs reported higher depression, lower HRQOL and lower general well-being; caregivers presented higher depression and lower general well-being; professionals reported the best ill- and well-being profiles. However, after controlling for demographic differences in age and education, hierarchical regressions highlighted that, though PwMSs reported higher depression and lower HRQOL than caregivers and professionals, their general well-being substantially leveled off. Conclusions: Well-being coexists with ill-being. It can counterbalance the negative effects of disease or caregiving, and its measurement could complement and support medical intervention. [Copyright &y& Elsevier]
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- 2014
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32. Conversion to Secondary Progressive Multiple Sclerosis: Patient Awareness and Needs. Results From an Online Survey in Italy and Germany
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Alessandra Solari, Ambra Mara Giovannetti, Andrea Giordano, Carla Tortorella, Valentina Torri Clerici, Giampaolo Brichetto, Franco Granella, Alessandra Lugaresi, Francesco Patti, Marco Salvetti, Ilaria Pesci, Eugenio Pucci, Diego Centonze, Maura Chiara Danni, Simona Bonavita, Diana Ferraro, Antonio Gallo, Alberto Gajofatto, Viviana Nociti, Luigi Grimaldi, Monica Grobberio, Roberta Lanzillo, Rachele Di Giovanni, Silvia Gregori, Alessia Manni, Erika Pietrolongo, Sarah Bertagnoli, Marco Ronzoni, Laura Compagnucci, Roberta Fantozzi, Beatrice Allegri, Sebastiano Arena, Maria Chiara Buscarinu, Loredana Sabattini, Maria Esmeralda Quartuccio, Elena Tsantes, Paolo Confaloneri, Andrea Tacchino, Insa Schiffmann, Anne Christin Rahn, Ingo Kleiter, Michele Messmer Uccelli, Anna Barabasch, Christoph Heesen, the ManTra Project, Solari, Alessandra, Giovannetti, Ambra Mara, Giordano, Andrea, Tortorella, Carla, Torri Clerici, Valentina, Brichetto, Giampaolo, Granella, Franco, Lugaresi, Alessandra, Patti, Francesco, Salvetti, Marco, Pesci, Ilaria, Pucci, Eugenio, Centonze, Diego, Danni, Maura Chiara, Bonavita, Simona, Ferraro, Diana, Gallo, Antonio, Gajofatto, Alberto, Nociti, Viviana, Grimaldi, Luigi, Grobberio, Monica, Lanzillo, Roberta, Di Giovanni, Rachele, Gregori, Silvia, Manni, Alessia, Pietrolongo, Erika, Bertagnoli, Sarah, Ronzoni, Marco, Compagnucci, Laura, Fantozzi, Roberta, Allegri, Beatrice, Arena, Sebastiano, Buscarinu, Maria Chiara, Sabattini, Loredana, Quartuccio, Maria Esmeralda, Tsantes, Elena, Confaloneri, Paolo, Tacchino, Andrea, Schiffmann, Insa, Rahn, Anne Christin, Kleiter, Ingo, Messmer Uccelli, Michele, Barabasch, Anna, Heesen, Christoph, Solari, A., Giovannetti, A. M., Giordano, A., Tortorella, C., Clerici, V. T., Brichetto, G., Granella, F., Lugaresi, A., Patti, F., Salvetti, M., Pesci, I., Pucci, E., Centonze, D., Danni, M. C., Bonavita, S., Ferraro, D., Gallo, A., Gajofatto, A., Nociti, V., Grimaldi, L., Grobberio, M., Lanzillo, R., Di Giovanni, R., Gregori, S., Manni, A., Pietrolongo, E., Bertagnoli, S., Ronzoni, M., Compagnucci, L., Fantozzi, R., Allegri, B., Arena, S., Buscarinu, M. C., Sabattini, L., Quartuccio, M. E., Tsantes, E., Confaloneri, P., Tacchino, A., Schiffmann, I., Rahn, A. C., Kleiter, I., Uccelli, M. M., Barabasch, A., Heesen, C., Borreani, C., De Luca, G., Gitto, L., Trojano, M., and Alessandra Solari, Ambra Mara Giovannetti, Andrea Giordano, Carla Tortorella, Valentina Torri Clerici, Giampaolo Brichetto, Franco Granella, Alessandra Lugaresi, Francesco Patti, Marco Salvetti, Ilaria Pesci, Eugenio Pucci, Diego Centonze, Maura Chiara Danni, Simona Bonavita, Diana Ferraro, Antonio Gallo, Alberto Gajofatto, Viviana Nociti, Luigi Grimaldi, Monica Grobberio, Roberta Lanzillo, Rachele Di Giovanni, Silvia Gregori, Alessia Manni, Erika Pietrolongo, Sarah Bertagnoli, Marco Ronzoni, Laura Compagnucci, Roberta Fantozzi, Beatrice Allegri, Sebastiano Arena, Maria Chiara Buscarinu, Loredana Sabattini, Maria Esmeralda Quartuccio, Elena Tsantes, Paolo Confaloneri, Andrea Tacchino, Insa Schiffmann, Anne Christin Rahn, Ingo Kleiter, Michele Messmer Uccelli, Anna Barabasch, Christoph Heesen, ManTra Project
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medicine.medical_specialty ,secondary progressive multiple sclerosis ,Disease ,Settore MED/26 ,multiple sclerosis ,lcsh:RC346-429 ,03 medical and health sciences ,0302 clinical medicine ,patient needs ,patient-physician communication ,Intervention (counseling) ,Health care ,Medicine ,030212 general & internal medicine ,Cognitive rehabilitation therapy ,conversion ,lcsh:Neurology. Diseases of the nervous system ,Original Research ,patient need ,business.industry ,Odds ratio ,Neurology ,Family medicine ,multiple sclerosi ,Secondary progressive multiple sclerosis ,online survey ,Neurology (clinical) ,Conversion ,Multiple sclerosis ,Online survey ,Patient needs ,Patient-physician communication ,business ,Patient awareness ,030217 neurology & neurosurgery ,Qualitative research - Abstract
Background: Few studies have investigated the experiences of patients around the conversion to secondary progressive multiple sclerosis (SPMS). ManTra is a mixed-method, co-production research project conducted in Italy and Germany to develop an intervention for newly-diagnosed SPMS patients. In previous project actions, we identified the needs and experiences of patients converting to SPMS via literature review and qualitative research which involved key stakeholders. Aims: The online patient survey aimed to assess, on a larger and independent sample of recently-diagnosed SPMS patients: (a) the characteristics associated to patient awareness of SPMS conversion; (b) the experience of conversion; (c) importance and prioritization of the needs previously identified. Methods: Participants were consenting adults with SPMS since ≤5 years. The survey consisted of three sections: on general and clinical characteristics; on experience of SPMS diagnosis disclosure (aware participants only); and on importance and prioritization of 33 pre-specified needs. Results: Of 215 participants, those aware of their SPMS diagnosis were 57% in Italy vs. 77% in Germany (p = 0.004). In both countries, over 80% of aware participants received a SPMS diagnosis from the neurologist; satisfaction with SPMS disclosure was moderate to high. Nevertheless, 28–35%obtained second opinions, and 48–56% reported they did not receive any information on SPMS. Participants actively seeking further information were 63% in Germany vs. 31% in Italy (p < 0.001). Variables independently associated to patient awareness were geographic area (odds ratio, OR 0.32, 95% CI 0.13–0.78 for Central Italy; OR 0.21, 95% CI 0.08–0.58 for Southern Italy [vs. Germany]) and activity limitations (OR 7.80, 95% CI 1.47–41.37 for dependent vs. autonomous patients). All pre-specified needs were scored a lot or extremely important, and two prioritized needs were shared by Italian and German patients: “physiotherapy” and “active patient care involvement.” The other two differed across countries: “an individualized health care plan” and “information on social rights and policies” in Italy, and “psychological support” and “cognitive rehabilitation” in Germany. Conclusions: Around 40% of SPMS patients were not aware of their disease form indicating a need to improve patient-physician communication. Physiotherapy and active patient care involvement were prioritized in both countries.
- Published
- 2019
33. Beyond Disease: Happiness, Goals, and Meanings among Persons with Multiple Sclerosis and Their Caregivers
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Eleonora Minacapelli, Alessandra Lugaresi, Sabina Cilia, Monica Falautano, Beatrice Allegri, Francesco Patti, Monica Grobberio, Marta Bassi, Marianna Pattini, Benedetta Goretti, Antonella Delle Fave, Maria Pia Amato, Erika Pietrolongo, Manuela Valsecchi, Fave, Antonella Delle, Bassi, Marta, Allegri, Beatrice, Cilia, Sabina, Falautano, Monica, Goretti, Benedetta, Grobberio, Monica, Minacapelli, Eleonora, Pattini, Marianna, Pietrolongo, Erika, Valsecchi, Manuela, Amato, Maria Pia, Lugaresi, Alessandra, and Patti, Francesco
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Instrumental and intrinsic value ,Psychology (all) ,media_common.quotation_subject ,caregiving ,daily living ,lcsh:BF1-990 ,050109 social psychology ,Disease ,Eudaimonia ,Caregiving ,Daily living ,Goals ,Meaning-making ,Mixed method ,Multiple sclerosis (MS) ,Psychosocial interventions ,Well-being ,Developmental psychology ,Goal ,03 medical and health sciences ,0302 clinical medicine ,International Classification of Functioning, Disability and Health ,well-being ,Spirituality ,Psychology ,0501 psychology and cognitive sciences ,goals ,Psychosocial intervention ,General Psychology ,Original Research ,media_common ,05 social sciences ,meaning-making ,multiple sclerosis (MS) ,lcsh:Psychology ,Happiness ,030217 neurology & neurosurgery ,mixed method ,psychosocial interventions - Abstract
The experience of persons with multiple sclerosis (MS) and their caregivers is usually investigated in terms of emotional distress and health-related quality of life, while well-being indicators remain largely underexplored. In addition, findings are often interpreted from the clinical perspective, neglecting socio-cultural aspects that may crucially contribute to individuals' functioning. At the methodological level, most studies rely on scaled instruments, not allowing participants to freely express their needs and resources. Based on the bio-psycho-social perspective endorsed by the International Classification of Functioning, well-being indicators were investigated among 62 persons with MS (PwMS), their 62 caregivers and two control groups, matched by age and gender. Participants completed the Positive Affect Negative Affect Schedule (PANAS), the Satisfaction with Life Scale (SWLS), and the Eudaimonic and Hedonic Happiness Investigation instrument (EHHI). EHHI provides information on participants' happiness, goals and meanings through scaled and open-ended questions, contextualized within major life domains. No relevant differences emerged among PwMS and caregivers, compared with the respective control groups, as concerns life domains associated with happiness, goals and meaning. Participants across groups prominently mentioned family, highlighting its intrinsic value and its relevance as a sharing context; health did not represent a major theme for PwMS; community, society and religion/spirituality issues were substantially neglected by all participants. PwMS and caregivers reported lower levels of positive affect than their control groups, while no substantial differences emerged for negative affect, happiness and meaningfulness levels in life and across most domains. Results suggest that the experience of MS is associated with well-being in relevant life domains, such as family and close relationships. Although PwMS and caregivers identified a lower number of goals and meaning-related opportunities compared to control groups, they showed a positive adjustment to disease through the development of personal and family resources. These assets are often undervalued by health professionals and social institutions, while they could be fruitfully exploited through the active involvement of PwMS and their families as expert and exemplary informants in initiatives aimed at promoting the well-being of individuals and communities.
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- 2017
34. Meaningful cognitive change for the Minimal Assessment of Cognitive Function in Multiple Sclerosis.
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Portaccio E, Grossi P, Bellomi F, Bianchi V, Cilia S, Falautano M, Goretti B, Niccolai C, Pietrolongo E, Viterbo RG, and Amato MP
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- Humans, Female, Male, Adult, Middle Aged, Cognition physiology, Young Adult, Multiple Sclerosis complications, Multiple Sclerosis physiopathology, Neuropsychological Tests standards, Cognitive Dysfunction diagnosis, Cognitive Dysfunction etiology, Cognitive Dysfunction physiopathology
- Abstract
Background: There is limited information on interpretation of cognitive changes over time in multiple sclerosis (MS)., Objective: This study aimed to provide normative data for the assessment of statistically meaningful change in all tests of the Minimal Assessment of Cognitive Function in MS (MACFIMS)., Methods: We applied the reliable change methodology to a healthy Italian cohort, assessed with two alternate versions of the MACFIMS 1 year apart. We calculated confidence intervals of retest score variance using the reliable change index (RCI). Moreover, multivariable linear regression models adjusted for age, sex, education, and baseline score were built to calculate the regression-based change index (RB-CI)., Results: Overall, 200 healthy individuals were enrolled. Thresholds for interpreting change in each test were calculated. In the multivariable models, baseline score was associated with retest score in all tests ( B from 0.439 to 0.760; p < 0.001). RB-CI can be calculated with data of the multivariable models., Conclusion: We provide normative data for reliable cognitive change evaluation for all the tests of the MACFIMS, which includes the Symbol Digit Modalities Test and Brief International Cognitive Assessment in MS, two widely used tools for screening and monitoring cognition in MS. Our findings can significantly improve the interpretation of cognitive changes in MS., Competing Interests: Declaration of Conflicting InterestsThe author(s) declared the following potential conflicts of interest with respect to the research, authorship, and/or publication of this article: E.P. received compensation for travel grants, participation in advisory board and speaking activities from Biogen, Merck Serono, Sanofi, Teva, Roche, BMS Celgene, Janssen, and Novartis, and served on the editorial board of Frontiers in Neurology and Brain Sciences. M.P.A. served on scientific advisory boards for and has received speaker honoraria and research support from Biogen Idec, Merck Serono, Bayer Schering Pharma, and Sanofi Aventis, and serves on the editorial board of Multiple Sclerosis Journal and BMC Neurology. P.G., F.B., V.B., S.C., M.F., B.G., C.N., E.P., and R.G.V. declare that there is no conflict of interest.
- Published
- 2024
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35. Conversion to Secondary Progressive Multiple Sclerosis: Patient Awareness and Needs. Results From an Online Survey in Italy and Germany.
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Solari A, Giovannetti AM, Giordano A, Tortorella C, Torri Clerici V, Brichetto G, Granella F, Lugaresi A, Patti F, Salvetti M, Pesci I, Pucci E, Centonze D, Danni MC, Bonavita S, Ferraro D, Gallo A, Gajofatto A, Nociti V, Grimaldi L, Grobberio M, Lanzillo R, Di Giovanni R, Gregori S, Manni A, Pietrolongo E, Bertagnoli S, Ronzoni M, Compagnucci L, Fantozzi R, Allegri B, Arena S, Buscarinu MC, Sabattini L, Quartuccio ME, Tsantes E, Confaloneri P, Tacchino A, Schiffmann I, Rahn AC, Kleiter I, Messmer Uccelli M, Barabasch A, Heesen C, and The ManTra Project
- Abstract
Background: Few studies have investigated the experiences of patients around the conversion to secondary progressive multiple sclerosis (SPMS). ManTra is a mixed-method, co-production research project conducted in Italy and Germany to develop an intervention for newly-diagnosed SPMS patients. In previous project actions, we identified the needs and experiences of patients converting to SPMS via literature review and qualitative research which involved key stakeholders. Aims: The online patient survey aimed to assess, on a larger and independent sample of recently-diagnosed SPMS patients: (a) the characteristics associated to patient awareness of SPMS conversion; (b) the experience of conversion; (c) importance and prioritization of the needs previously identified. Methods: Participants were consenting adults with SPMS since ≤5 years. The survey consisted of three sections: on general and clinical characteristics; on experience of SPMS diagnosis disclosure (aware participants only); and on importance and prioritization of 33 pre-specified needs. Results: Of 215 participants, those aware of their SPMS diagnosis were 57% in Italy vs. 77% in Germany ( p = 0.004). In both countries, over 80% of aware participants received a SPMS diagnosis from the neurologist; satisfaction with SPMS disclosure was moderate to high. Nevertheless, 28-35% obtained second opinions, and 48-56% reported they did not receive any information on SPMS. Participants actively seeking further information were 63% in Germany vs. 31% in Italy ( p < 0.001). Variables independently associated to patient awareness were geographic area (odds ratio, OR 0.32, 95% CI 0.13-0.78 for Central Italy; OR 0.21, 95% CI 0.08-0.58 for Southern Italy [vs. Germany]) and activity limitations (OR 7.80, 95% CI 1.47-41.37 for dependent vs. autonomous patients). All pre-specified needs were scored a lot or extremely important, and two prioritized needs were shared by Italian and German patients: "physiotherapy" and "active patient care involvement." The other two differed across countries: "an individualized health care plan" and "information on social rights and policies" in Italy, and "psychological support" and "cognitive rehabilitation" in Germany. Conclusions: Around 40% of SPMS patients were not aware of their disease form indicating a need to improve patient-physician communication. Physiotherapy and active patient care involvement were prioritized in both countries.
- Published
- 2019
- Full Text
- View/download PDF
36. eMSQOL-29: Prospective validation of the abbreviated, electronic version of MSQOL-54.
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Rosato R, Testa S, Bertolotto A, Scavelli F, Giovannetti AM, Confalonieri P, Patti F, Chisari CG, Lugaresi A, Pietrolongo E, Grasso MG, Rossi I, Toscano A, Loera B, Giordano A, and Solari A
- Subjects
- Adult, Aged, Cross-Sectional Studies, Female, Humans, Male, Middle Aged, Prospective Studies, Psychometrics instrumentation, Reproducibility of Results, Young Adult, Multiple Sclerosis psychology, Patient Reported Outcome Measures, Psychometrics standards, Quality of Life psychology
- Abstract
Background: We recently devised a shortened version of the 54-item Multiple Sclerosis Quality of Life (MSQOL-54) in paper (MSQOL-29, consisting of 25 items forming 7 subscales and 4 single items, and one filter question for 3 'sexual function' items) and electronic format (eMSQOL-29)., Objectives: To prospectively assess eMSQOL-29 psychometric properties, acceptability/equivalence versus MSQOL-29., Methods: Multiple sclerosis (MS) patients ( n = 623; Expanded Disability Status Scale (EDSS) range 0.0-9.0) completed eMSQOL-29, Hospital Anxiety and Depression Scale, Functional Assessment of MS (FAMS), European Quality of life Five Dimensions-3L, and received EDSS and Symbol Digit Modalities Test (SDMT). Equivalence versus MSQOL-29 was assessed in 242 patients (randomized cross-over design)., Results: 'Sexual function' items were filtered out by 273 patients (47%). No multi-item scale had floor effect, while five had ceiling effect. Cronbach's alpha range was 0.88-0.90. Confirmatory factor analysis showed good overall fit and the two-factor solution for composite scores was confirmed. Criterion validity was sub-optimal for 'cognitive function' (vs SDMT, r = 0.25) and 'social function' (vs FAMS social function, r = 0.38). eMSQOL-29 equivalence was confirmed and its acceptability was good., Conclusion: eMSQOL-29 showed good internal consistency, factor structure and no floor effect, while most subscales had some ceiling effect. Criterion validity was sub-optimal for two subscales. Equivalence and acceptability were good.
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- 2019
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37. Simultaneous early-onset severe autoimmune hemolytic anemia and albuminuria during alemtuzumab treatment for multiple sclerosis.
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di Ioia M, Farina D, di Tommaso V, Travaglini D, Pietrolongo E, Onofrj M, and de Luca G
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- Adult, Humans, Male, Albuminuria chemically induced, Alemtuzumab adverse effects, Anemia, Hemolytic, Autoimmune chemically induced, Immunologic Factors adverse effects, Multiple Sclerosis, Relapsing-Remitting drug therapy
- Abstract
Background: Alemtuzumab, approved for multiple sclerosis (MS), can cause secondary autoimmune adverse events including thyroid disorders, immune thrombocytopenia (ITP), and glomerular nephropathies. Non-ITP autoimmune cytopenias are rarely reported., Objective: To report a case of autoimmune hemolytic anemia (AIHA) and nephropathy in a MS patient treated with alemtuzumab., Case Report: A 34-year-old man with MS developed albuminuria and AIHA after the first and only alemtuzumab treatment, with positive Coombs' direct and indirect tests and IgG autoantibodies. Both AIHA and nephropathy resolved 1 month after treatment with steroids and intravenous immunoglobulins., Conclusion: Our report adds to literature on AIHA and nephropathy after alemtuzumab treatment and suggests to add Coombs' tests to the screening panel required for alemtuzumab treatment.
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- 2018
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38. A comparison of the brief international cognitive assessment for multiple sclerosis and the brief repeatable battery in multiple sclerosis patients.
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Niccolai C, Portaccio E, Goretti B, Hakiki B, Giannini M, Pastò L, Righini I, Falautano M, Minacapelli E, Martinelli V, Incerti C, Nocentini U, Fenu G, Cocco E, Marrosu MG, Garofalo E, Ambra FI, Maddestra M, Consalvo M, Viterbo RG, Trojano M, Losignore NA, Zimatore GB, Pietrolongo E, Lugaresi A, Pippolo L, Roscio M, Ghezzi A, Castellano D, Stecchi S, and Amato MP
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- Adult, Cognition Disorders etiology, Female, Humans, Male, Middle Aged, Multiple Sclerosis complications, Cognition Disorders diagnosis, Multiple Sclerosis diagnosis, Neuropsychological Tests standards, Psychometrics instrumentation
- Abstract
Background: Recently, a Brief International Cognitive Assessment for Multiple Sclerosis (BICAMS) has been developed as an international and standardized brief cognitive test, which is easily performed in everyday clinical practice for neuropsychological assessment in multiple sclerosis (MS). However, we need to gather more information about this tool compared to other neuropsychological batteries. The aim of our study is to compare the performance of BICAMS and Brief Repeatable Battery (BRB) in MS subjects., Methods: Tests of the BRB and BICAMS were administered to MS patients recruited from 11 Italian MS centres. Cognitive impairment (CI) was defined as the failure on at least two tests (scores below the fifth percentile) on the BRB and as the failure on at least one test of the BICAMS. The agreement between the performances on the two batteries was assessed through Cohen's K statistic. Finally we calculated the effects sizes for each test of the two batteries using Cohen's d., Results: The two batteries were administered to 192 MS patients (142 women, 50 men; mean age 41.4 ± 10.8 years, mean education 12.3 ± 3.5 years). Mean scores of patients were lower compared to those of healthy subjects in all the cognitive measures examined. Forty-six MS patients were identified as impaired and 48 as unimpaired on both of the batteries, when the Symbol Digit Modalities Test (SDMT) was included in the analysis. Cohen's K statistic was 0.46 which corresponds to a moderate accord. If the SDMT was excluded from the BRB, 37 MS patients were identified as impaired and 57 as unimpaired on both of the batteries. Cohen's K statistic was 0.3 which corresponds to a poor accord. The SDMT, the Paced Auditory Serial Addition Test (PASAT) 3 and 2 yielded higher d values (SDMT 0.83, PASAT 3 0.65, PASAT 2 0.84)., Conclusions: This study confirms the feasibility of BICAMS in everyday clinical practice for the identification of CI and highlights the good psychometric properties of the SDMT.
- Published
- 2015
- Full Text
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39. The Brief International Cognitive Assessment for Multiple Sclerosis (BICAMS): normative values with gender, age and education corrections in the Italian population.
- Author
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Goretti B, Niccolai C, Hakiki B, Sturchio A, Falautano M, Minacapelli E, Martinelli V, Incerti C, Nocentini U, Murgia M, Fenu G, Cocco E, Marrosu MG, Garofalo E, Ambra FI, Maddestra M, Consalvo M, Viterbo RG, Trojano M, Losignore NA, Zimatore GB, Pietrolongo E, Lugaresi A, Langdon D, Portaccio E, and Amato MP
- Subjects
- Adolescent, Adult, Aged, Cognition Disorders etiology, Female, Healthy Volunteers, Humans, Italy, Male, Middle Aged, Multiple Sclerosis complications, Reference Values, Reproducibility of Results, Young Adult, Cognition Disorders diagnosis, Multiple Sclerosis diagnosis, Neuropsychological Tests standards
- Abstract
Background: BICAMS (Brief International Cognitive Assessment for Multiple Sclerosis) has been recently developed as brief, practical and universal assessment tool for cognitive impairment in MS subjects. It includes the Symbol Digit Modalities Test (SDMT), the California Verbal Learning Test-2 (CVLT2) and the Brief Visuospatial Memory Test-Revised (BVMT-R) . In this study we aimed at gathering regression based normative data for the BICAMS battery in the Italian population., Methods: Healthy subjects were consecutively recruited among patient friends and relatives. Corrections for demographics were calculated using multivariable linear regression models. Test-retest reliability was assessed using the Pearson correlation coefficient., Results: The BICAMS battery was administered to 273 healthy subjects (180 women, mean age 38.9 ± 13.0 years, mean education 14.9 ± 3.0 years). Test-retest reliability was good for all the tests., Conclusions: The study provided normative data of the BICAMS for the Italian population confirming good test-retest reliability which can facilitate the use of the battery in clinical practice, also for longitudinal patient assessments.
- Published
- 2014
- Full Text
- View/download PDF
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