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Conversion to secondary progressive multiple sclerosis: Multistakeholder experiences and needs in Italy.
PLoS One. 2020; 15(2):e0228587.Plos

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.

Authors+Show Affiliations

Unit of Neuroepidemiology, Fondazione IRCCS Istituto Neurologico Carlo Besta, Milan, Italy. Unit of Neuroimmunology and Neuromuscular Diseases, Fondazione IRCCS Istituto Neurologico Carlo Besta, Milan, Italy.Department of Neuroscience, Imaging and Clinical Sciences, G d'Annunzio University of Chieti-Pescara, Chieti, Italy.Unit of Clinical Psychology, Foundation IRCCS Istituto Nazionale per la Cura dei Tumori, Milan, Italy.Unit of Neuroepidemiology, Fondazione IRCCS Istituto Neurologico Carlo Besta, Milan, Italy. Department of Psychology, University of Turin, Turin, 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.Institute of Neuroimmunology and Multiple Sclerosis, University Medical Center Hamburg-Eppendorf, Hamburg, Germany.Unit of Neuroepidemiology, Fondazione IRCCS Istituto Neurologico Carlo Besta, Milan, Italy.No affiliation info available

Pub Type(s)

Journal Article
Multicenter Study
Research Support, Non-U.S. Gov't

Language

eng

PubMed ID

32053608

Citation

Giovannetti, Ambra Mara, et al. "Conversion to Secondary Progressive Multiple Sclerosis: Multistakeholder Experiences and Needs in Italy." PloS One, vol. 15, no. 2, 2020, pp. e0228587.
Giovannetti AM, Pietrolongo E, Borreani C, et al. Conversion to secondary progressive multiple sclerosis: Multistakeholder experiences and needs in Italy. PLoS ONE. 2020;15(2):e0228587.
Giovannetti, A. M., Pietrolongo, E., Borreani, C., Giordano, A., Schiffmann, I., Barabasch, A., Heesen, C., & Solari, A. (2020). Conversion to secondary progressive multiple sclerosis: Multistakeholder experiences and needs in Italy. PloS One, 15(2), e0228587. https://doi.org/10.1371/journal.pone.0228587
Giovannetti AM, et al. Conversion to Secondary Progressive Multiple Sclerosis: Multistakeholder Experiences and Needs in Italy. PLoS ONE. 2020;15(2):e0228587. PubMed PMID: 32053608.
* Article titles in AMA citation format should be in sentence-case
TY - JOUR T1 - Conversion to secondary progressive multiple sclerosis: Multistakeholder experiences and needs in Italy. AU - Giovannetti,Ambra Mara, AU - Pietrolongo,Erika, AU - Borreani,Claudia, AU - Giordano,Andrea, AU - Schiffmann,Insa, AU - Barabasch,Anna, AU - Heesen,Christoph, AU - Solari,Alessandra, AU - ,, Y1 - 2020/02/13/ PY - 2019/10/07/received PY - 2020/01/17/accepted PY - 2020/2/14/entrez PY - 2020/2/14/pubmed PY - 2020/5/7/medline SP - e0228587 EP - e0228587 JF - PloS one JO - PLoS ONE VL - 15 IS - 2 N2 - 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. SN - 1932-6203 UR - https://www.unboundmedicine.com/medline/citation/32053608/Conversion_to_secondary_progressive_multiple_sclerosis:_Multistakeholder_experiences_and_needs_in_Italy L2 - http://dx.plos.org/10.1371/journal.pone.0228587 DB - PRIME DP - Unbound Medicine ER -