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Conversion to Secondary Progressive Multiple Sclerosis: Patient Awareness and Needs. Results From an Online Survey in Italy and Germany.
Front Neurol. 2019; 10:916.FN

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.

Authors+Show Affiliations

Unit of Neuroepidemiology, Fondazione IRCCS Istituto Neurologico Carlo Besta, Milan, Italy.Unit of Neuroepidemiology, Fondazione IRCCS Istituto Neurologico Carlo Besta, Milan, Italy. Multiple Sclerosis Unit, Fondazione IRCCS Istituto Neurologico Carlo Besta, Milan, Italy.Unit of Neuroepidemiology, Fondazione IRCCS Istituto Neurologico Carlo Besta, Milan, Italy. Department of Psychology, University of Turin, Turin, Italy.Department of Neurosciences, San Camillo Forlanini Hospital, Rome, Italy.Multiple Sclerosis Unit, Fondazione IRCCS Istituto Neurologico Carlo Besta, Milan, Italy.Rehabilitation Centre, Italian Multiple Sclerosis Society, Genoa, Italy. Scientific Research Area, Italian Multiple Sclerosis Foundation, Genoa, Italy.Neurosciences Unit, Department of Medicine and Surgery, University of Parma, Parma, Italy.UOSI Riabilitazione Sclerosi Multipla, IRCCS Istituto delle Scienze Neurologiche di Bologna, Bologna, Italy. Dipartimento di Scienze Biomediche e Neuromotorie, Università di Bologna, Bologna, Italy.Sezione Neuroscienze, Dipartimento di Scienze Mediche e Chirurgiche e Tecnologie Avanzate "G.F. Ingrassia", Università di Catania, Catania, Italy. Centro Sclerosi Multipla, PO Policlinico "G. Rodolico", Catania, Italy.IRCCS Neuromed, Pozzilli, Italy. Department of Neurosciences, Mental Health, and Sensory Organs (NESMOS), Sapienza University of Rome, Rome, Italy.Unità di Neurologia, Centro Sclerosi Multipla, Ospedale di Vaio, Fidenza, Italy.UOC Neurologia, Ospedale "A. Murri", ASUR Marche-AV4, Fermo, Italy.IRCCS Neuromed, Pozzilli, Italy. Multiple Sclerosis Clinical and Research Unit, Department of Systems Medicine, Tor Vergata University, Rome, Italy.Clinica Neurologica, Università Politecnica delle Marche, Ancona, Italy.II Clinica Neurologica, Università degli Studi della Campania "Luigi Vanvitelli", Naples, Italy.Department of Biomedical, Metabolic and Neurosciences, University of Modena and Reggio Emilia, Modena, Italy.I Clinica Neurologica, Università degli Studi della Campania "Luigi Vanvitelli", Naples, Italy.Dipartimento di Neuroscienze, Biomedicina e Movimento, Università di Verona, Verona, Italy.Istituto di Neurologia, Fondazione Policlinico Universitario "A. Gemelli" IRCCS, Rome, Italy.UOC Neurologia e Centro Regionale SM, Fondazione Istituto "G. Giglio", Cefalù, Italy.Laboratory of Clinical Neuropsychology, Department of Neurology and Psychology, ASST Lariana, Como, Italy.Neurosciences, Reproductive and Odontostomatological Sciences Department, Federico II University of Naples, Naples, Italy.Rehabilitation Unit, Mons. L. Novarese Hospital, Moncrivello, Italy.UOC Neurologia, Ospedale San Camillo de Lellis, Rieti, Italy.Department of Basic Medical Sciences, Neurosciences and Sense Organs, Aldo Moro University of Bari, Bari, Italy.Department of Neuroscience, Imaging and Clinical Sciences, G. D'Annunzio University of Chieti-Pescara, Chieti, Italy.Italian Multiple Sclerosis Society, Mantua, Italy.Centro Sclerosi Multipla, Ospedale "G. Salvini"-ASST Rhodense, Garbagnate Milanese, Italy.Clinica Neurologica, Università Politecnica delle Marche, Ancona, Italy.IRCCS Neuromed, Pozzilli, Italy.Unità di Neurologia, Centro Sclerosi Multipla, Ospedale di Vaio, Fidenza, Italy.Sezione Neuroscienze, Dipartimento di Scienze Mediche e Chirurgiche e Tecnologie Avanzate "G.F. Ingrassia", Università di Catania, Catania, Italy. Centro Sclerosi Multipla, PO Policlinico "G. Rodolico", Catania, Italy.Department of Neurosciences, Mental Health, and Sensory Organs (NESMOS), Sapienza University of Rome, Rome, Italy.UOSI Riabilitazione Sclerosi Multipla, IRCCS Istituto delle Scienze Neurologiche di Bologna, Bologna, Italy.Department of Neurosciences, San Camillo Forlanini Hospital, Rome, Italy.Neurosciences Unit, Department of Medicine and Surgery, University of Parma, Parma, Italy.Multiple Sclerosis Unit, Fondazione IRCCS Istituto Neurologico Carlo Besta, Milan, Italy.Scientific Research Area, Italian Multiple Sclerosis Foundation, Genoa, Italy.Institute of Neuroimmunology and Multiple Sclerosis, University Medical Center Hamburg-Eppendorf, Hamburg, Germany. Department of Neurology, University Medical Center Hamburg-Eppendorf, Hamburg, Germany.Institute of Neuroimmunology and Multiple Sclerosis, University Medical Center Hamburg-Eppendorf, Hamburg, Germany.Kempfenhausen Centre for Treatment of Multiple Sclerosis, Marianne-Strauβ-Klinik, Berg, Germany.Italian Multiple Sclerosis Society Research Foundation (FISM), Genoa, Italy.Institute of Neuroimmunology and Multiple Sclerosis, University Medical Center Hamburg-Eppendorf, Hamburg, Germany.Institute of Neuroimmunology and Multiple Sclerosis, University Medical Center Hamburg-Eppendorf, Hamburg, Germany. Department of Neurology, University Medical Center Hamburg-Eppendorf, Hamburg, Germany.Unit of Neuroepidemiology, Fondazione IRCCS Istituto Neurologico Carlo Besta, Milan, Italy. Multiple Sclerosis Unit, Fondazione IRCCS Istituto Neurologico Carlo Besta, Milan, Italy. Department of Psychology, University of Turin, Turin, Italy. Department of Neurosciences, San Camillo Forlanini Hospital, Rome, Italy. Rehabilitation Centre, Italian Multiple Sclerosis Society, Genoa, Italy. Scientific Research Area, Italian Multiple Sclerosis Foundation, Genoa, Italy. Neurosciences Unit, Department of Medicine and Surgery, University of Parma, Parma, Italy. UOSI Riabilitazione Sclerosi Multipla, IRCCS Istituto delle Scienze Neurologiche di Bologna, Bologna, Italy. Dipartimento di Scienze Biomediche e Neuromotorie, Università di Bologna, Bologna, Italy. Sezione Neuroscienze, Dipartimento di Scienze Mediche e Chirurgiche e Tecnologie Avanzate "G.F. Ingrassia", Università di Catania, Catania, Italy. Centro Sclerosi Multipla, PO Policlinico "G. Rodolico", Catania, Italy. IRCCS Neuromed, Pozzilli, Italy. Department of Neurosciences, Mental Health, and Sensory Organs (NESMOS), Sapienza University of Rome, Rome, Italy. Unità di Neurologia, Centro Sclerosi Multipla, Ospedale di Vaio, Fidenza, Italy. UOC Neurologia, Ospedale "A. Murri", ASUR Marche-AV4, Fermo, Italy. Multiple Sclerosis Clinical and Research Unit, Department of Systems Medicine, Tor Vergata University, Rome, Italy. Clinica Neurologica, Università Politecnica delle Marche, Ancona, Italy. II Clinica Neurologica, Università degli Studi della Campania "Luigi Vanvitelli", Naples, Italy. Department of Biomedical, Metabolic and Neurosciences, University of Modena and Reggio Emilia, Modena, Italy. I Clinica Neurologica, Università degli Studi della Campania "Luigi Vanvitelli", Naples, Italy. Dipartimento di Neuroscienze, Biomedicina e Movimento, Università di Verona, Verona, Italy. Istituto di Neurologia, Fondazione Policlinico Universitario "A. Gemelli" IRCCS, Rome, Italy. UOC Neurologia e Centro Regionale SM, Fondazione Istituto "G. Giglio", Cefalù, Italy. Laboratory of Clinical Neuropsychology, Department of Neurology and Psychology, ASST Lariana, Como, Italy. Neurosciences, Reproductive and Odontostomatological Sciences Department, Federico II University of Naples, Naples, Italy. Rehabilitation Unit, Mons. L. Novarese Hospital, Moncrivello, Italy. UOC Neurologia, Ospedale San Camillo de Lellis, Rieti, Italy. Department of Basic Medical Sciences, Neurosciences and Sense Organs, Aldo Moro University of Bari, Bari, Italy. Department of Neuroscience, Imaging and Clinical Sciences, G. D'Annunzio University of Chieti-Pescara, Chieti, Italy. Italian Multiple Sclerosis Society, Mantua, Italy. Centro Sclerosi Multipla, Ospedale "G. Salvini"-ASST Rhodense, Garbagnate Milanese, Italy. Institute of Neuroimmunology and Multiple Sclerosis, University Medical Center Hamburg-Eppendorf, Hamburg, Germany. Department of Neurology, University Medical Center Hamburg-Eppendorf, Hamburg, Germany. Kempfenhausen Centre for Treatment of Multiple Sclerosis, Marianne-Strauβ-Klinik, Berg, Germany. Italian Multiple Sclerosis Society Research Foundation (FISM), Genoa, Italy.

Pub Type(s)

Journal Article

Language

eng

PubMed ID

31507519

Citation

Solari, Alessandra, et al. "Conversion to Secondary Progressive Multiple Sclerosis: Patient Awareness and Needs. Results From an Online Survey in Italy and Germany." Frontiers in Neurology, vol. 10, 2019, p. 916.
Solari A, Giovannetti AM, Giordano A, et al. Conversion to Secondary Progressive Multiple Sclerosis: Patient Awareness and Needs. Results From an Online Survey in Italy and Germany. Front Neurol. 2019;10:916.
Solari, A., Giovannetti, A. M., Giordano, A., Tortorella, C., Torri Clerici, V., 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., ... The ManTra Project, . (2019). Conversion to Secondary Progressive Multiple Sclerosis: Patient Awareness and Needs. Results From an Online Survey in Italy and Germany. Frontiers in Neurology, 10, 916. https://doi.org/10.3389/fneur.2019.00916
Solari A, et al. Conversion to Secondary Progressive Multiple Sclerosis: Patient Awareness and Needs. Results From an Online Survey in Italy and Germany. Front Neurol. 2019;10:916. PubMed PMID: 31507519.
* Article titles in AMA citation format should be in sentence-case
TY - JOUR T1 - Conversion to Secondary Progressive Multiple Sclerosis: Patient Awareness and Needs. Results From an Online Survey in Italy and Germany. AU - Solari,Alessandra, AU - Giovannetti,Ambra Mara, AU - Giordano,Andrea, AU - Tortorella,Carla, AU - Torri Clerici,Valentina, AU - Brichetto,Giampaolo, AU - Granella,Franco, AU - Lugaresi,Alessandra, AU - Patti,Francesco, AU - Salvetti,Marco, AU - Pesci,Ilaria, AU - Pucci,Eugenio, AU - Centonze,Diego, AU - Danni,Maura Chiara, AU - Bonavita,Simona, AU - Ferraro,Diana, AU - Gallo,Antonio, AU - Gajofatto,Alberto, AU - Nociti,Viviana, AU - Grimaldi,Luigi, AU - Grobberio,Monica, AU - Lanzillo,Roberta, AU - Di Giovanni,Rachele, AU - Gregori,Silvia, AU - Manni,Alessia, AU - Pietrolongo,Erika, AU - Bertagnoli,Sarah, AU - Ronzoni,Marco, AU - Compagnucci,Laura, AU - Fantozzi,Roberta, AU - Allegri,Beatrice, AU - Arena,Sebastiano, AU - Buscarinu,Maria Chiara, AU - Sabattini,Loredana, AU - Quartuccio,Maria Esmeralda, AU - Tsantes,Elena, AU - Confaloneri,Paolo, AU - Tacchino,Andrea, AU - Schiffmann,Insa, AU - Rahn,Anne Christin, AU - Kleiter,Ingo, AU - Messmer Uccelli,Michele, AU - Barabasch,Anna, AU - Heesen,Christoph, AU - The ManTra Project,, Y1 - 2019/08/22/ PY - 2019/02/11/received PY - 2019/08/07/accepted PY - 2019/9/12/entrez PY - 2019/9/12/pubmed PY - 2019/9/12/medline KW - conversion KW - multiple sclerosis KW - online survey KW - patient needs KW - patient-physician communication KW - secondary progressive multiple sclerosis SP - 916 EP - 916 JF - Frontiers in neurology JO - Front Neurol VL - 10 N2 - 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. SN - 1664-2295 UR - https://www.unboundmedicine.com/medline/citation/31507519/Conversion_to_Secondary_Progressive_Multiple_Sclerosis:_Patient_Awareness_and_Needs._Results_From_an_Online_Survey_in_Italy_and_Germany L2 - https://doi.org/10.3389/fneur.2019.00916 DB - PRIME DP - Unbound Medicine ER -
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