Epidemiology, management and patient needs in myasthenia gravis: an Italian multistakeholder consensus based on Delphi methodology
Objectives To provide comprehensive information on the burden of myasthenia gravis (MG) in Italy, including the unmet needs of patients and several other aspects related to the disease, based on skilled viewpoints of MG experts.Design Iterative analysis conducted in accordance with the best practice...
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BMJ Publishing Group
2024-12-01
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| Series: | BMJ Open |
| Online Access: | https://bmjopen.bmj.com/content/14/12/e086225.full |
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| author | Renato Mantegazza Giuseppe Limongelli Carlotta Galeone Francesco Habetswallner Raffaele Iorio Giuseppina Annicchiarico Maria Bonaria Uccheddu Paolo Mariani |
| author_facet | Renato Mantegazza Giuseppe Limongelli Carlotta Galeone Francesco Habetswallner Raffaele Iorio Giuseppina Annicchiarico Maria Bonaria Uccheddu Paolo Mariani |
| author_sort | Renato Mantegazza |
| collection | DOAJ |
| description | Objectives To provide comprehensive information on the burden of myasthenia gravis (MG) in Italy, including the unmet needs of patients and several other aspects related to the disease, based on skilled viewpoints of MG experts.Design Iterative analysis conducted in accordance with the best practices of the Delphi method, including anonymity, controlled feedback, and statistical stability of consensus.Setting and participants 24 clinicians, 18 public health experts and 4 patient associations experts completed all the Delphi iterations between 18 April and 3 July 2023, for a total of 46 participants from several Italian Regions.Outcome measures Five areas of investigation related to MG were examined: epidemiology in Italy and characteristics of disease; diagnostic issues and Italian patient journey; unmet needs during the acute and chronic phases of MG; quality of life; public health management of MG. Consensus in the Delphi iterations was defined by both the percentage level of agreement between panellists or the median value of the responses.Results We reported a high level of agreement (ie, >66.7% of panellists) on the prevalence and incidence of disease in Italy and on several management issues. A strong impact of MG on the quality of life of patients also emerged. Cross-agreement was achieved among different subgroups of panellists (ie, clinicians, public health experts and patient associations representatives) for most items proposed.Conclusions This study provided guidance for educational and practical aspects of MG in Italy, highlighted disease severity and its role on patients’ quality of life. A few gaps related to the handling of MG in Italy also emerged. |
| format | Article |
| id | doaj-art-8be528d85492401eb8128ca44cbfc698 |
| institution | Kabale University |
| issn | 2044-6055 |
| language | English |
| publishDate | 2024-12-01 |
| publisher | BMJ Publishing Group |
| record_format | Article |
| series | BMJ Open |
| spelling | doaj-art-8be528d85492401eb8128ca44cbfc6982025-01-14T19:05:09ZengBMJ Publishing GroupBMJ Open2044-60552024-12-01141210.1136/bmjopen-2024-086225Epidemiology, management and patient needs in myasthenia gravis: an Italian multistakeholder consensus based on Delphi methodologyRenato Mantegazza0Giuseppe Limongelli1Carlotta Galeone2Francesco Habetswallner3Raffaele Iorio4Giuseppina Annicchiarico5Maria Bonaria Uccheddu6Paolo Mariani79 Neuroimmunology and Neuromuscular Diseases Unit, Fondazione IRCCS Istituto Neurologico Carlo Besta, Milano, Italy5 Inherited and Rare Cardiovascular Diseases, Department of Translational Medical Sciences, University of Campania Luigi Vanvitelli, Monaldi Hospital, Naples, Italy8 Bicocca Applied Statistics Center (B-ASC), Department of Economics, Management and Statistics, University of Milan-Bicocca, Milan, Italy1 Clinical Neurophysiology Unit, Cardarelli Hospital, Naples, Italy2 Dipartimento di Neuroscienze, Università Cattolica del Sacro Cuore, Rome, Italy4 Regional Coordination of Rare Diseases (CoReMaR), Apulia Regional Agency for Health and Social Care (AReSS), Bari, Italy6 European Myasthenia Gravis Association (EuMGA), La Louviere, Belgium8 Bicocca Applied Statistics Center (B-ASC), Department of Economics, Management and Statistics, University of Milan-Bicocca, Milan, ItalyObjectives To provide comprehensive information on the burden of myasthenia gravis (MG) in Italy, including the unmet needs of patients and several other aspects related to the disease, based on skilled viewpoints of MG experts.Design Iterative analysis conducted in accordance with the best practices of the Delphi method, including anonymity, controlled feedback, and statistical stability of consensus.Setting and participants 24 clinicians, 18 public health experts and 4 patient associations experts completed all the Delphi iterations between 18 April and 3 July 2023, for a total of 46 participants from several Italian Regions.Outcome measures Five areas of investigation related to MG were examined: epidemiology in Italy and characteristics of disease; diagnostic issues and Italian patient journey; unmet needs during the acute and chronic phases of MG; quality of life; public health management of MG. Consensus in the Delphi iterations was defined by both the percentage level of agreement between panellists or the median value of the responses.Results We reported a high level of agreement (ie, >66.7% of panellists) on the prevalence and incidence of disease in Italy and on several management issues. A strong impact of MG on the quality of life of patients also emerged. Cross-agreement was achieved among different subgroups of panellists (ie, clinicians, public health experts and patient associations representatives) for most items proposed.Conclusions This study provided guidance for educational and practical aspects of MG in Italy, highlighted disease severity and its role on patients’ quality of life. A few gaps related to the handling of MG in Italy also emerged.https://bmjopen.bmj.com/content/14/12/e086225.full |
| spellingShingle | Renato Mantegazza Giuseppe Limongelli Carlotta Galeone Francesco Habetswallner Raffaele Iorio Giuseppina Annicchiarico Maria Bonaria Uccheddu Paolo Mariani Epidemiology, management and patient needs in myasthenia gravis: an Italian multistakeholder consensus based on Delphi methodology BMJ Open |
| title | Epidemiology, management and patient needs in myasthenia gravis: an Italian multistakeholder consensus based on Delphi methodology |
| title_full | Epidemiology, management and patient needs in myasthenia gravis: an Italian multistakeholder consensus based on Delphi methodology |
| title_fullStr | Epidemiology, management and patient needs in myasthenia gravis: an Italian multistakeholder consensus based on Delphi methodology |
| title_full_unstemmed | Epidemiology, management and patient needs in myasthenia gravis: an Italian multistakeholder consensus based on Delphi methodology |
| title_short | Epidemiology, management and patient needs in myasthenia gravis: an Italian multistakeholder consensus based on Delphi methodology |
| title_sort | epidemiology management and patient needs in myasthenia gravis an italian multistakeholder consensus based on delphi methodology |
| url | https://bmjopen.bmj.com/content/14/12/e086225.full |
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