Gurpreet K Reen1, Eli Silber2, Dawn W Langdon3. 1. Department of Psychology, Royal Holloway, University of London, Egham, UK. Electronic address: Gurpreet.reen.2014@live.rhul.ac.uk. 2. Department of Neurology, King's College Hospital NHS Foundation Trust, Denmark Hill, London, UK. Electronic address: eli.silber@nhs.net. 3. Department of Psychology, Royal Holloway, University of London, Egham, UK. Electronic address: d.langdon@rhul.ac.uk.
Abstract
BACKGROUND: Multiple sclerosis (MS) patients are faced with complex risk-benefit profiles of disease-modifying drugs (DMDs) when making treatment decisions. For effective shared decision-making, MS patients should understand the risks and benefits of DMDs and make treatment decisions based on personal preferences. METHODS: This is an inclusive systematic review to primarily assess current understanding of MS patients for information about DMDs provided during the standard healthcare system. The secondary aim assesses MS patients' preferences for specific risks and benefits of treatments. A systematic search was conducted using PubMed, Embase and Google Scholar. A total of 22 studies were reviewed across both aims. Relevant quantitative and qualitative data was extracted by two authors. A narrative synthesis was conducted due to heterogeneity of research findings. RESULTS: There was a trend for DMD risks to be generally underestimated and DMD benefits to be generally overestimated by MS patients. Treatments that could potentially offer substantial symptom improvement, delay in disease progression, or reduction in relapses were preferred even at the expense of higher risks. CONCLUSIONS: Many patients' experience of information during the standard healthcare system does not provide satisfactory understanding of the risks and benefits of DMDs. Effective ways to communicate risk and benefit DMD information when making shared treatment decisions needs to be identified. Patient preferences of DMD risks and benefits should also be taken into account.
BACKGROUND:Multiple sclerosis (MS) patients are faced with complex risk-benefit profiles of disease-modifying drugs (DMDs) when making treatment decisions. For effective shared decision-making, MSpatients should understand the risks and benefits of DMDs and make treatment decisions based on personal preferences. METHODS: This is an inclusive systematic review to primarily assess current understanding of MSpatients for information about DMDs provided during the standard healthcare system. The secondary aim assesses MSpatients' preferences for specific risks and benefits of treatments. A systematic search was conducted using PubMed, Embase and Google Scholar. A total of 22 studies were reviewed across both aims. Relevant quantitative and qualitative data was extracted by two authors. A narrative synthesis was conducted due to heterogeneity of research findings. RESULTS: There was a trend for DMD risks to be generally underestimated and DMD benefits to be generally overestimated by MSpatients. Treatments that could potentially offer substantial symptom improvement, delay in disease progression, or reduction in relapses were preferred even at the expense of higher risks. CONCLUSIONS: Many patients' experience of information during the standard healthcare system does not provide satisfactory understanding of the risks and benefits of DMDs. Effective ways to communicate risk and benefit DMD information when making shared treatment decisions needs to be identified. Patient preferences of DMD risks and benefits should also be taken into account.
Authors: Jeri Burtchell; Daisy Clemmons; Joann Clemmons; Tim Sabutis; Adeline Rosenberg; Jennifer Graves; Michael L Sweeney; John Kramer; Marina Ziehn; Brandon Brown; Jamie L Weiss; Ahmed Z Obeidat Journal: Neurol Ther Date: 2022-05-24
Authors: Elena Álvarez-Rodríguez; César Manuel Sánchez-Franco; María José Pérez-Haro; Laura Bello-Otero; Marta Aguado-Valcarcel; Inés González-Suárez Journal: PLoS One Date: 2022-05-13 Impact factor: 3.752
Authors: Boris A Kallmann; Klaus Tiel-Wilck; Jennifer S Kullmann; Ulrich Engelmann; Andrew Chan Journal: Ther Adv Neurol Disord Date: 2019-03-27 Impact factor: 6.570
Authors: Celia Oreja-Guevara; Stanca Potra; Birgit Bauer; Diego Centonze; Maria-Paz Giambastiani; Gavin Giovannoni; Jürg Kesselring; Dawn Langdon; Sarah A Morrow; Jocelyne Nouvet-Gire; Maija Pontaga; Peter Rieckmann; Sven Schippling; Nektaria Alexandri; Jane Shanahan; Heidi Thompson; Pieter Van Galen; Patrick Vermersch; David Yeandle Journal: Adv Ther Date: 2019-09-05 Impact factor: 3.845
Authors: Hiba El Masri; Treasure M McGuire; Christine Dalais; Mieke van Driel; Helen Benham; Samantha A Hollingworth Journal: J Med Libr Assoc Date: 2022-04-01
Authors: Jeremy Hobart; Amy Bowen; George Pepper; Harriet Crofts; Lucy Eberhard; Thomas Berger; Alexey Boyko; Cavit Boz; Helmut Butzkueven; Elisabeth Gulowsen Celius; Jelena Drulovic; José Flores; Dana Horáková; Christine Lebrun-Frénay; Ruth Ann Marrie; James Overell; Fredrik Piehl; Peter Vestergaard Rasmussen; Maria José Sá; Carmen-Adella Sîrbu; Eli Skromne; Øivind Torkildsen; Vincent van Pesch; Timothy Vollmer; Magd Zakaria; Tjalf Ziemssen; Gavin Giovannoni Journal: Mult Scler Date: 2018-11-01 Impact factor: 6.312