Knowledge Is Power, but Is Ignorance Bliss? Optimising Conversations About Disease Progression in Multiple Sclerosis
Abstract Communication about multiple sclerosis (MS) disease progression between healthcare professionals (HCPs) and people with MS (PwMS) has historically been considered difficult, and attention to improving it has been neglected. However, a growing number of studies have shown that this is a key...
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Adis, Springer Healthcare
2019-11-01
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doaj-837538e162404edd880f4a786abaeb342020-11-25T04:01:32ZengAdis, Springer HealthcareNeurology and Therapy2193-82532193-65362019-11-019111010.1007/s40120-019-00170-7Knowledge Is Power, but Is Ignorance Bliss? Optimising Conversations About Disease Progression in Multiple SclerosisPatrick Vermersch0Jane Shanahan1Dawn Langdon2David Yeandle3Nektaria Alexandri4Sven Schippling5University of Lille, INSERM U995, CHU Lille, FHU ImminentMS in the 21st Century Steering GroupRoyal Holloway, University of LondonMS in the 21st Century Steering GroupGlobal Medical Affairs, Neurology and Immunology, Merck KGaAUniversitätsspital Zürich and Neuroimmunology and Multiple Sclerosis Research, University Hospital ZurichAbstract Communication about multiple sclerosis (MS) disease progression between healthcare professionals (HCPs) and people with MS (PwMS) has historically been considered difficult, and attention to improving it has been neglected. However, a growing number of studies have shown that this is a key area to get right, since negative experiences can affect patient satisfaction, treatment adherence, and clinical outcomes. This article reports on a symposium at the European Charcot Foundation, 2018, led by a panel of leading clinicians and patient experts from MS in the 21st Century, who debated the benefits, drawbacks, and challenges of communicating about disease progression, for both HCPs and PwMS, and potential ways to optimise these discussions. PwMS' preferences and priorities regarding conversations about disease progression vary widely. While the majority want to have these conversations, some will be reluctant and/or emotionally unready. Communication therefore needs to be personalised, and HCPs should always be prepared to have such conversations in an appropriate and sensitive manner. Clinical information can be opaque for PwMS, so HCPs also need to use language that is clear, easily understandable, and patient-friendly. MS in the 21st Century is in the process of developing several resources and programmes to help improve disease progression communication between HCPs and PwMS. Funding Merck KGaA, Darmstadt, Germany. Plain Language Summary Plain language summary available for this article.http://link.springer.com/article/10.1007/s40120-019-00170-7CommunicationDisease progressionPatient engagementMS in the 21st CenturyMultiple sclerosis |
collection |
DOAJ |
language |
English |
format |
Article |
sources |
DOAJ |
author |
Patrick Vermersch Jane Shanahan Dawn Langdon David Yeandle Nektaria Alexandri Sven Schippling |
spellingShingle |
Patrick Vermersch Jane Shanahan Dawn Langdon David Yeandle Nektaria Alexandri Sven Schippling Knowledge Is Power, but Is Ignorance Bliss? Optimising Conversations About Disease Progression in Multiple Sclerosis Neurology and Therapy Communication Disease progression Patient engagement MS in the 21st Century Multiple sclerosis |
author_facet |
Patrick Vermersch Jane Shanahan Dawn Langdon David Yeandle Nektaria Alexandri Sven Schippling |
author_sort |
Patrick Vermersch |
title |
Knowledge Is Power, but Is Ignorance Bliss? Optimising Conversations About Disease Progression in Multiple Sclerosis |
title_short |
Knowledge Is Power, but Is Ignorance Bliss? Optimising Conversations About Disease Progression in Multiple Sclerosis |
title_full |
Knowledge Is Power, but Is Ignorance Bliss? Optimising Conversations About Disease Progression in Multiple Sclerosis |
title_fullStr |
Knowledge Is Power, but Is Ignorance Bliss? Optimising Conversations About Disease Progression in Multiple Sclerosis |
title_full_unstemmed |
Knowledge Is Power, but Is Ignorance Bliss? Optimising Conversations About Disease Progression in Multiple Sclerosis |
title_sort |
knowledge is power, but is ignorance bliss? optimising conversations about disease progression in multiple sclerosis |
publisher |
Adis, Springer Healthcare |
series |
Neurology and Therapy |
issn |
2193-8253 2193-6536 |
publishDate |
2019-11-01 |
description |
Abstract Communication about multiple sclerosis (MS) disease progression between healthcare professionals (HCPs) and people with MS (PwMS) has historically been considered difficult, and attention to improving it has been neglected. However, a growing number of studies have shown that this is a key area to get right, since negative experiences can affect patient satisfaction, treatment adherence, and clinical outcomes. This article reports on a symposium at the European Charcot Foundation, 2018, led by a panel of leading clinicians and patient experts from MS in the 21st Century, who debated the benefits, drawbacks, and challenges of communicating about disease progression, for both HCPs and PwMS, and potential ways to optimise these discussions. PwMS' preferences and priorities regarding conversations about disease progression vary widely. While the majority want to have these conversations, some will be reluctant and/or emotionally unready. Communication therefore needs to be personalised, and HCPs should always be prepared to have such conversations in an appropriate and sensitive manner. Clinical information can be opaque for PwMS, so HCPs also need to use language that is clear, easily understandable, and patient-friendly. MS in the 21st Century is in the process of developing several resources and programmes to help improve disease progression communication between HCPs and PwMS. Funding Merck KGaA, Darmstadt, Germany. Plain Language Summary Plain language summary available for this article. |
topic |
Communication Disease progression Patient engagement MS in the 21st Century Multiple sclerosis |
url |
http://link.springer.com/article/10.1007/s40120-019-00170-7 |
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