2004;14(1):5–22. https://doi.org/10.1177/1352458518790397. Oreja-Guevara C, Potra S, Bauer B, Centonze D, Giambastiani MP, Giovannoni G, Kesselring J, Langdon D, Morrow SA, Nouvet-Gire J, Pontaga M, Rieckmann P, Schippling S, Alexandri N, Shanahan J, Thompson H, Van Galen P, Vermersch P, Yeandle D. Adv Ther. https://doi.org/10.1212/WNL.0000000000000560. https://doi.org/10.3389/fneur.2018.00174. Epub 2014 Feb 6. Buecken R, Galushko M, Golla H, et al. Qual Health Res. Mult Scler J. Evid Based Nurs. Such communication may be especially important for PwMS, who face an uncertain future due to the high variability of the disease course and difficulties in determining an accurate prognosis [5, 6]. Communication therefore needs to be personalised, and HCPs should always be prepared to have such conversations in an appropriate and sensitive manner. Solheim AM, Mygland Å, Ljøstad U. Nektaria Alexandri is an employee of Merck KGaA. HCPs generally define progression clinically in terms of measurable change either radiologically or through common metrics of physical impairment. Which of these “incidental” findings do you also want to receive? Added to this, many patients will comment that the word ‘progression’ produces an almost visceral reaction.
But ignorance is also bliss. 2016;11(7):e0158982. A repeated theme in this book is the burden of trying to make sense of all that takes place in life “under the sun.” This is emphasized by this fourth exclamation of how futile or pointless this search is. This article is published under an open access license. Vermersch, P., Shanahan, J., Langdon, D. et al. This is why ignorance is bliss for certain people. They are often less optimistic about their prognosis than HCPs; for example, believing that their MS means they will inevitably become wheelchair-bound [23], fuelled by negative depictions of the disease via television, films, and print media. If this seems contradictory to knowledge is power, it is Finally, educational initiatives and communication tools such as those developed by MS in the 21st Century have an important role to play in supporting both PwMS and HCPs to optimise these conversations. This expression is usually attributed to Sir Francis Bacon, a philosopher, statesman, and scientist. Improving communication with multiple sclerosis patients. Keywords:
Every person has limitations. 2018;13(2):e0193407. Heesen C, Köpke S, Solari A, Geiger F, Kasper J. 2018;379(9):846–55. https://doi.org/10.1016/J.JNS.2013.02.018. Treasure Island (FL): StatPearls Publishing; 2020 Jan–. Neurol Ther 9, 1–10 (2020). https://doi.org/10.2147/PPA.S115090. National Center for Biotechnology Information, Unable to load your collection due to an error, Unable to load your delegates due to an error. The role of educational initiatives in encouraging patient self-management in chronic conditions such as MS has also been widely acknowledged for decades [55]. Solomon’s thoughts and words in Ecclesiastes—his existential reflections—reveal how knowledge is power and ignorance is bliss converge as a conundrum. PubMed 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. I know that knowledge is power and it is always better in the long run to know what you’re dealing with so you can react intelligently. 2018;7(1):37–49. Petrie-Flom Center at Harvard Law School » https://doi.org/10.1111/hex.12253.
Now that technologies like whole genome sequencing (WGS) and whole exome sequencing (WGS) are being used widely in clinical care and translational research, patients and research participants are increasingly being asked to specify which genetic results they would like to receive. Soundy A, Roskell C, Adams R, Elder T, Dawes H. Understanding health care professional-patient interactions in multiple sclerosis: a systematic review and thematic synthesis. Learn how your comment data is processed. PwMS' preferences and priorities regarding conversations about disease progression vary widely. PLoS One. There is evidence to suggest that a common misunderstanding amongst PwMS is that progression is the same as treatment failure, and this perceived lack of treatment efficacy is one of the driving factors behind cessation of adherence [33, 34]. A panel of leading clinicians and patient experts from MS in the 21st Century debated the benefits, drawbacks, and challenges of communicating about disease progression, and potential ways to improve these conversations, with an international audience at the European Charcot Foundation Annual Meeting 2018.
Fox RJ, Coffey CS, Conwit R, et al. Mult Scler Relat Disord. 1. My worst nightmare is being diagnosed with MS. We can’t “straighten what is bent” as if it were never bent. Google Scholar. 2018;20(6):287–97. This should be somewhat self-evident with all the conflicting and confusing information available on the internet today. Health Expect. 2013;15:e67. To them I say, ignorance is bliss, but knowledge is power! PubMed Google Scholar. This is especially true for people with multiple sclerosis (PwMS), who face an uncertain disease course and are required to make various key decisions as their disease progresses. doi: 10.1371/journal.pone.0158982. -, Hickey J. While the majority want to have these conversations, some will be reluctant and/or emotionally unready. https://doi.org/10.1177/1352458516672017. https://doi.org/10.2147/PPA.S27038. I don’t have MS right now, but it might develop later.
Patrick Vermersch. Article Therefore, supplementary educational initiatives are important aspects of fostering good communication and building a shared decision-making framework [28].
All Rights Reserved — HG.
PubMed Online health information seeking: how people with multiple sclerosis find, assess and integrate treatment information to manage their health. Finally you visit a young geneticist fresh out of training, hoping that she will know of another test to try. In: StatPearls [Internet]. Open J Ther Rehabil. ⌊Now⌋ I know that this is ⌊like⌋ trying to catch the wind. 2015;5:e007674. Have you ever had a fantasy? The members of MS in the 21st Century are as follows: Alexey Boyko, Birgit Bauer, Trishna Bharadia, Elisabeth Gulowsen Celius, Maria Paz Giambastiani, Gavin Giovannoni, Jeremy Hobart, Jürg Kesselring, Dawn Langdon, Sarah A Morrow, Jocelyne Nouvet-Gire, Elisabeth Kasilingam, Alice Laroni, Celia Oreja-Guevara, Maija Pontaga, Stanca Potra, Peter Rieckmann, Sven Schippling, Jane Shanahan, Marja-Liisa Sumelahti, Heidi Thompson, Pieter van Galen, Patrick Vermersch, Mitzi Williams and David Yeandle. CAS https://doi.org/10.1177/1363459316674787. https://doi.org/10.1111/j.1369-7625.2009.00578.x. If you knew what the future is likely to hold, would you feel fatalistic or empowered to take control of it? https://doi.org/10.1177/1352458516671204. https://doi.org/10.1097/WCO.0000000000000622. I think most people would reply “yes”, and do you know what a fantasy is? 2019;85:653–66.
This group recognises the importance of effective communication between PwMS and HCPs in optimising the patient journey and overall MS care, and is committed to improving communication through awareness-raising activities and educational resource development. We thank the European Charcot Foundation audience members for their contributions to this debate. As grandparents, we delight in their newfound knowledge of things we already know. 2017;23(3):362–9. Epub 2018 Nov 9. Here’s your two options- either know nothing about anything, which as a sentient being is impossible, or know everything about everything, which also is impossible because our brains cannot comprehend all that knowledge. The concept of knowledge as power has more ancient roots than the 16th century (Bacon). These results are often referred to as incidental findings, although the generation of these results is often integral, and not merely incidental, to the research being performed. Find NCBI SARS-CoV-2 literature, sequence, and clinical content: https://www.ncbi.nlm.nih.gov/sars-cov-2/. Mult Scler. So we’ve already reasoned why these quotes are paradoxical, but just for kicks, let’s further drive home the point. MS disease progression is a controversial topic within the healthcare community. | https://doi.org/10.7224/1537-2073.2017-070. https://doi.org/10.2147/CEOR.S130334. 2016;22(13):1719–31. Methley AM, Chew-Graham CA, Cheraghi-Sohi S, Campbell SM. But life isn’t a series of events, it’s much more. If you ever have thoughts on or about these posts feel free to comment your view/opinion on the subject or any insights you might have. Kappos L, Bar-Or A, Cree BAC, et al. Effective communication at the point of multiple sclerosis diagnosis. (Thomas Grey Archive) Many compare this with the phrase: "What you don't know can't hurt you" I prefer Ricky Gervais' take: "Ignorance is bliss… Despite the demonstrable benefits of good HCP–patient communication for PwMS, 25–50% of PwMS report never having discussed disease progression or long-term prognosis with their HCPs [14] (MS in the 21st Century data on file). Knowledge is power yet ignorance is bliss, how can this be? 2017;21(3):316–36. Administrative support, medical writing assistance, and journal submission fees were funded by Merck KGaA, Darmstadt, Germany.
Defining the clinical course of multiple sclerosis: the 2013 revisions. The impact of quality of life on treatment preferences in multiple sclerosis patients. The timing of these conversations is also important to consider, as patients will probably have different views about when they want to receive information on disease progression, with some wanting the information as early as possible. Article Ocrelizumab infusion experience in patients with relapsing and primary progressive multiple sclerosis: results from the phase 3 randomized OPERA I, OPERA II, and ORATORIO studies. Is your life grounded and centered in the Lord, or are you still trying to catch the wind in some way or another? Metrics details. Neurology and Therapy Marrie RA, Salter AR, Tyry T, Fox RJ, Cutter GR. Physician–patient communication. University of Lille, INSERM U995, CHU Lille, FHU Imminent, 59000, Lille, France, MS in the 21st Century Steering Group, Ascot, UK, Royal Holloway, University of London, London, UK, MS in the 21st Century Steering Group, Southampton, UK, Global Medical Affairs, Neurology and Immunology, Merck KGaA, Darmstadt, Germany, Universitätsspital Zürich and Neuroimmunology and Multiple Sclerosis Research, University Hospital Zurich, Zurich, Switzerland, Center for Neuroscience and Federal Institute of Technology (ETH) Zurich, University of Zurich, Zurich, Switzerland, You can also search for this author in Palliat Med.
Do people with multiple sclerosis want to know their prognosis? The human genome contains more than 20,000 genes, and there are thousands of diseases known to medicine. Neurol Ther. Google Scholar. ( Log Out / Is he implying that ignorance is bliss? I think the best way to start is by defining “power”- it is the ability to control outcomes. Oreja-Guevara C, Potra S, Bauer B, et al. Accessed Sept 2019. Correspondence to Power and moral responsibility that is. Neurology.
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