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Published in: Neurology and Therapy 3/2022

Open Access 24-05-2022 | COVID-19 | Review

A Targeted Literature Search and Phenomenological Review of Perspectives of People with Multiple Sclerosis and Healthcare Professionals of the Immunology of Disease-Modifying Therapies

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

Published in: Neurology and Therapy | Issue 3/2022

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Abstract

Introduction

The mechanisms of action of disease-modifying therapies (DMTs) for multiple sclerosis (MS) are complex and involve an interplay of immune system components. People with MS (PwMS) may lack a clear understanding of the immunological pathways involved in MS and its treatment; effective communication between healthcare professionals (HCPs) and PwMS is needed to facilitate shared decision-making when discussing the disease and selecting DMTs and is particularly important in the coronavirus disease 2019 (COVID-19) era.

Methods

In this patient-authored two-part review, we performed a targeted literature search to assess the need for better communication between HCPs and PwMS regarding treatment selection, and also conducted a qualitative survey of four patient and care-partner authors to obtain insights regarding their understanding of and preferences for the treatment and management of MS.

Results

Following a search of the Embase and MEDLINE databases using Ovid in June 2020, an analysis of 40 journal articles and conference abstracts relating to patient empowerment and decision-making in DMT selection for MS showed a preference for safety and efficacy of treatments, followed by autonomy and convenience of administration. A need for better communication between HCPs and PwMS during treatment selection to improve patient satisfaction was also identified. The open survey responses from the patient authors revealed a need for greater involvement in decision-making processes and desire for improved communication and information tools.

Conclusions

This targeted literature search and phenomenological review confirms PwMS preferences for empowered decision-making in disease management and treatment selection, to optimize independence, safety, and efficacy. It also identifies an unmet need for improved communication and information tools that convey MS information in a relatable manner. Furthermore, this review seeks to address this unmet need by providing plain language figures and descriptions of MS immune mechanisms that can be used to facilitate discussions between HCPs and PwMS.
Appendix
Available only for authorised users
Literature
1.
go back to reference Stankiewicz JM, Weiner HL. An argument for broad use of high efficacy treatments in early multiple sclerosis. Neurol Neuroimmunol Neuroinflamm. 2020;7:e636.PubMedCrossRef Stankiewicz JM, Weiner HL. An argument for broad use of high efficacy treatments in early multiple sclerosis. Neurol Neuroimmunol Neuroinflamm. 2020;7:e636.PubMedCrossRef
2.
go back to reference Bayas A. Improving adherence to injectable disease-modifying drugs in multiple sclerosis. Expert Opin Drug Deliv. 2013;10:285–7.PubMedCrossRef Bayas A. Improving adherence to injectable disease-modifying drugs in multiple sclerosis. Expert Opin Drug Deliv. 2013;10:285–7.PubMedCrossRef
4.
go back to reference Wallin MT, Culpepper WJ, Campbell JD, et al. The prevalence of MS in the United States: a population-based estimate using health claims data. Neurology. 2019;92:e1029–40.PubMedPubMedCentralCrossRef Wallin MT, Culpepper WJ, Campbell JD, et al. The prevalence of MS in the United States: a population-based estimate using health claims data. Neurology. 2019;92:e1029–40.PubMedPubMedCentralCrossRef
6.
go back to reference Burtchell J, Fetty K, Miller K, Minden K, Kantor D. Two sides to every story: perspectives from four patients and a healthcare professional on multiple sclerosis disease progression. Neurol Ther. 2019;8:185–205.PubMedPubMedCentralCrossRef Burtchell J, Fetty K, Miller K, Minden K, Kantor D. Two sides to every story: perspectives from four patients and a healthcare professional on multiple sclerosis disease progression. Neurol Ther. 2019;8:185–205.PubMedPubMedCentralCrossRef
7.
go back to reference Burtchell J, Clemmons D, Clemmons J, et al. Patient and health professional perspectives of immune dynamics and MS disease-modifying therapies mode of action throughout COVID-19 pandemic [poster]. In: Presented at MS virtual 8th joint ACTRIMS-ECTRIMS meeting. 2020. Burtchell J, Clemmons D, Clemmons J, et al. Patient and health professional perspectives of immune dynamics and MS disease-modifying therapies mode of action throughout COVID-19 pandemic [poster]. In: Presented at MS virtual 8th joint ACTRIMS-ECTRIMS meeting. 2020.
8.
9.
go back to reference Li R, Patterson KR, Bar-Or A. Reassessing B cell contributions in multiple sclerosis. Nat Immunol. 2018;19:696–707.PubMedCrossRef Li R, Patterson KR, Bar-Or A. Reassessing B cell contributions in multiple sclerosis. Nat Immunol. 2018;19:696–707.PubMedCrossRef
10.
go back to reference Vasileiadis GK, Dardiotis E, Mavropoulos A, et al. Regulatory B and T lymphocytes in multiple sclerosis: friends or foes? Auto Immun Highlights. 2018;9:9.PubMedPubMedCentralCrossRef Vasileiadis GK, Dardiotis E, Mavropoulos A, et al. Regulatory B and T lymphocytes in multiple sclerosis: friends or foes? Auto Immun Highlights. 2018;9:9.PubMedPubMedCentralCrossRef
15.
go back to reference Cross AH, Naismith RT. Established and novel disease-modifying treatments in multiple sclerosis. J Intern Med. 2014;275:350–63.PubMedCrossRef Cross AH, Naismith RT. Established and novel disease-modifying treatments in multiple sclerosis. J Intern Med. 2014;275:350–63.PubMedCrossRef
16.
go back to reference Kappos L, Antel J, Comi G, et al. Oral fingolimod (FTY720) for relapsing multiple sclerosis. N Engl J Med. 2006;355:1124–40.PubMedCrossRef Kappos L, Antel J, Comi G, et al. Oral fingolimod (FTY720) for relapsing multiple sclerosis. N Engl J Med. 2006;355:1124–40.PubMedCrossRef
17.
go back to reference Chun J, Brinkmann V. A mechanistically novel, first oral therapy for multiple sclerosis: the development of fingolimod (FTY720, Gilenya). Discov Med. 2011;12(64):213–28.PubMedPubMedCentral Chun J, Brinkmann V. A mechanistically novel, first oral therapy for multiple sclerosis: the development of fingolimod (FTY720, Gilenya). Discov Med. 2011;12(64):213–28.PubMedPubMedCentral
18.
go back to reference Montalban X, Arnold DL, Weber MS, et al. Placebo-controlled trial of an oral BTK inhibitor in multiple sclerosis. N Engl J Med. 2019;380:2406–17.PubMedCrossRef Montalban X, Arnold DL, Weber MS, et al. Placebo-controlled trial of an oral BTK inhibitor in multiple sclerosis. N Engl J Med. 2019;380:2406–17.PubMedCrossRef
19.
go back to reference Bayas A, Maurer M. Teriflunomide for the treatment of relapsing-remitting multiple sclerosis: patient preference and adherence. Patient Prefer Adherence. 2015;9:265–74.PubMedPubMedCentralCrossRef Bayas A, Maurer M. Teriflunomide for the treatment of relapsing-remitting multiple sclerosis: patient preference and adherence. Patient Prefer Adherence. 2015;9:265–74.PubMedPubMedCentralCrossRef
20.
go back to reference Colligan E, Metzler A, Tiryaki E. Shared decision-making in multiple sclerosis. Mult Scler. 2017;23:185–90.PubMedCrossRef Colligan E, Metzler A, Tiryaki E. Shared decision-making in multiple sclerosis. Mult Scler. 2017;23:185–90.PubMedCrossRef
21.
go back to reference Heesen C, Solari A, Giordano A, Kasper J, Kopke S. Decisions on multiple sclerosis immunotherapy: new treatment complexities urge patient engagement. J Neurol Sci. 2011;16:1507–12. Heesen C, Solari A, Giordano A, Kasper J, Kopke S. Decisions on multiple sclerosis immunotherapy: new treatment complexities urge patient engagement. J Neurol Sci. 2011;16:1507–12.
22.
go back to reference Reen GK, Silber E, Langdon DW. Multiple sclerosis patients’ understanding and preferences for risks and benefits of disease-modifying drugs: a systematic review. J Neurol Sci. 2017;375:107–22.PubMedCrossRef Reen GK, Silber E, Langdon DW. Multiple sclerosis patients’ understanding and preferences for risks and benefits of disease-modifying drugs: a systematic review. J Neurol Sci. 2017;375:107–22.PubMedCrossRef
23.
go back to reference Visser LA, Louapre C, Uyl-de Groot CA, Redekop WK. Patient needs and preferences in relapsing-remitting multiple sclerosis: a systematic review. Mult Scler Relat Disord. 2020;39:101929.PubMedCrossRef Visser LA, Louapre C, Uyl-de Groot CA, Redekop WK. Patient needs and preferences in relapsing-remitting multiple sclerosis: a systematic review. Mult Scler Relat Disord. 2020;39:101929.PubMedCrossRef
24.
go back to reference de Ceuninck van Capelle A, Meide HV, Vosman FJH, Visser LH. A qualitative study assessing patient perspectives in the process of decision-making on disease modifying therapies (DMT’s) in multiple sclerosis (MS). PLoS ONE. 2017;12:e0182806.PubMedCentralCrossRef de Ceuninck van Capelle A, Meide HV, Vosman FJH, Visser LH. A qualitative study assessing patient perspectives in the process of decision-making on disease modifying therapies (DMT’s) in multiple sclerosis (MS). PLoS ONE. 2017;12:e0182806.PubMedCentralCrossRef
25.
go back to reference Falet J, Deshmukh SR, Babinski M, et al. A qualitative study of patient perspectives regarding the role of the neurologist in advanced multiple sclerosis. In: 53rd Annual congress of the Canadian Neurological Sciences Federation: Can J Neurol; 2018, p. S24 Falet J, Deshmukh SR, Babinski M, et al. A qualitative study of patient perspectives regarding the role of the neurologist in advanced multiple sclerosis. In: 53rd Annual congress of the Canadian Neurological Sciences Federation: Can J Neurol; 2018, p. S24
26.
go back to reference Johnson K, Kuehn CM, Yorkston KM, et al. Patient perspectives on disease-modifying therapy in multiple sclerosis. Int J MS Care. 2006;8:11–18.CrossRef Johnson K, Kuehn CM, Yorkston KM, et al. Patient perspectives on disease-modifying therapy in multiple sclerosis. Int J MS Care. 2006;8:11–18.CrossRef
27.
go back to reference Schlegel V, Leray E. From medical prescription to patient compliance: a qualitative insight into the neurologist-patient relationship in multiple sclerosis. Int J MS Care. 2018;20:279–86.PubMedPubMedCentralCrossRef Schlegel V, Leray E. From medical prescription to patient compliance: a qualitative insight into the neurologist-patient relationship in multiple sclerosis. Int J MS Care. 2018;20:279–86.PubMedPubMedCentralCrossRef
28.
go back to reference Tencer T, Will O, Nguyen J et al. Neurologist and patient preferences in multiple sclerosis: UK and US qualitative research findings. In: ISPOR Europe 2019: Value Health; 2019, p. S757 Tencer T, Will O, Nguyen J et al. Neurologist and patient preferences in multiple sclerosis: UK and US qualitative research findings. In: ISPOR Europe 2019: Value Health; 2019, p. S757
29.
go back to reference Members of the MS in the 21st Century Steering Group:, Rieckmann P, Centonze D, et al. Unmet needs, burden of treatment, and patient engagement in multiple sclerosis: a combined perspective from the MS in the 21st Century Steering Group. Mult Scler Relat Disord. 2018;19:153–60.CrossRef Members of the MS in the 21st Century Steering Group:, Rieckmann P, Centonze D, et al. Unmet needs, burden of treatment, and patient engagement in multiple sclerosis: a combined perspective from the MS in the 21st Century Steering Group. Mult Scler Relat Disord. 2018;19:153–60.CrossRef
30.
go back to reference Adlard NE, Panpurina A, Patel VJ, Khurana V. Patient preferences for different modes and frequency of administration of multiple sclerosis disease modifying therapies. In: ISPOR Europe 2018: new perspective for improving 21st century health systems: Value Health; 2018;S351(PND351). Adlard NE, Panpurina A, Patel VJ, Khurana V. Patient preferences for different modes and frequency of administration of multiple sclerosis disease modifying therapies. In: ISPOR Europe 2018: new perspective for improving 21st century health systems: Value Health; 2018;S351(PND351).
31.
go back to reference Bergmann A, Lang M, Ludger Bischoff C, et al. Patient preferences in the choice of disease modifying drugs for multiple sclerosis. In: 66th American Academy of Neurology annual meeting, AAN: Neurology; 2014, p. P3.137. Bergmann A, Lang M, Ludger Bischoff C, et al. Patient preferences in the choice of disease modifying drugs for multiple sclerosis. In: 66th American Academy of Neurology annual meeting, AAN: Neurology; 2014, p. P3.137.
32.
go back to reference Carlin C, Higuera L, Anderson S. Improving patient-centred care by assessing patient preference for multiple sclerosis disease-modifying agents: a stated-choice experiment. Perm J. 2017;21:16–102.PubMedPubMedCentralCrossRef Carlin C, Higuera L, Anderson S. Improving patient-centred care by assessing patient preference for multiple sclerosis disease-modifying agents: a stated-choice experiment. Perm J. 2017;21:16–102.PubMedPubMedCentralCrossRef
33.
go back to reference Garcia-Dominguez JM, Munoz D, Comellas M, et al. Patient preferences for treatment of multiple sclerosis with disease-modifying therapies: a discrete choice experiment. Patient Prefer Adherence. 2016;10:1945–56.PubMedPubMedCentralCrossRef Garcia-Dominguez JM, Munoz D, Comellas M, et al. Patient preferences for treatment of multiple sclerosis with disease-modifying therapies: a discrete choice experiment. Patient Prefer Adherence. 2016;10:1945–56.PubMedPubMedCentralCrossRef
34.
go back to reference Hincapie AL, Penm J, Burns CF. Factors associated with patient preferences for disease-modifying therapies in multiple sclerosis. J Manag Care Spec Pharm. 2017;23:822–30.PubMed Hincapie AL, Penm J, Burns CF. Factors associated with patient preferences for disease-modifying therapies in multiple sclerosis. J Manag Care Spec Pharm. 2017;23:822–30.PubMed
35.
go back to reference Jonker MF, Donkers B, Goossens LMA, et al. Summarizing patient preferences for the competitive landscape of multiple sclerosis treatment options. Med Decis Mak. 2020;40:198–211.CrossRef Jonker MF, Donkers B, Goossens LMA, et al. Summarizing patient preferences for the competitive landscape of multiple sclerosis treatment options. Med Decis Mak. 2020;40:198–211.CrossRef
36.
go back to reference Bottomley C, Lloyd A, Bennett G, Adlard N. A discrete choice experiment to determine UK patient preference for attributes of disease modifying treatments in multiple sclerosis. J Med Econ. 2017;20:863–70.PubMedCrossRef Bottomley C, Lloyd A, Bennett G, Adlard N. A discrete choice experiment to determine UK patient preference for attributes of disease modifying treatments in multiple sclerosis. J Med Econ. 2017;20:863–70.PubMedCrossRef
37.
go back to reference Utz KS, Hoog J, Wentrup A, et al. Patient preferences for disease-modifying drugs in multiple sclerosis therapy: a choice-based conjoint analysis. Ther Adv Neurol Disord. 2014;7:263–75.PubMedPubMedCentralCrossRef Utz KS, Hoog J, Wentrup A, et al. Patient preferences for disease-modifying drugs in multiple sclerosis therapy: a choice-based conjoint analysis. Ther Adv Neurol Disord. 2014;7:263–75.PubMedPubMedCentralCrossRef
38.
go back to reference Wilson L, Loucks A, Bui C, et al. Patient centred decision making: use of conjoint analysis to determine risk-benefit trade-offs for preference sensitive treatment choices. J Neurol Sci. 2014;344:80–7.PubMedCrossRef Wilson L, Loucks A, Bui C, et al. Patient centred decision making: use of conjoint analysis to determine risk-benefit trade-offs for preference sensitive treatment choices. J Neurol Sci. 2014;344:80–7.PubMedCrossRef
39.
go back to reference Wilson LS, Loucks A, Gipson G, et al. Patient preferences for attributes of multiple sclerosis disease-modifying therapies: development and results of a ratings-based conjoint analysis. Int J MS Care. 2015;17:74–82.PubMedPubMedCentralCrossRef Wilson LS, Loucks A, Gipson G, et al. Patient preferences for attributes of multiple sclerosis disease-modifying therapies: development and results of a ratings-based conjoint analysis. Int J MS Care. 2015;17:74–82.PubMedPubMedCentralCrossRef
40.
go back to reference Clark LA, Gabriele S, Brown H, et al. Understanding disease-modifying therapy administration route suitability in different multiple sclerosis patient segments in the 5EU and US. In: ISPOR 2019: Value Health; 2017, p. S378 Clark LA, Gabriele S, Brown H, et al. Understanding disease-modifying therapy administration route suitability in different multiple sclerosis patient segments in the 5EU and US. In: ISPOR 2019: Value Health; 2017, p. S378
41.
go back to reference Serafini P, Jones E, Pike J. Assessment of patient preferences in the treatment of relapsing-remitting multiple sclerosis in public and private systems in Latin America. In: ISPOR 19th annual European congress: Value Health; 2016, p. A435 Serafini P, Jones E, Pike J. Assessment of patient preferences in the treatment of relapsing-remitting multiple sclerosis in public and private systems in Latin America. In: ISPOR 19th annual European congress: Value Health; 2016, p. A435
42.
go back to reference de Seze J, Borgel F, Brudon F. Patient perceptions of multiple sclerosis and its treatment. Patient Prefer Adherence. 2012;6:263–73.PubMedPubMedCentral de Seze J, Borgel F, Brudon F. Patient perceptions of multiple sclerosis and its treatment. Patient Prefer Adherence. 2012;6:263–73.PubMedPubMedCentral
43.
go back to reference Glusman MB, Roberg B, Thelen J, et al. Patient-provider communication and perceived autonomy support among multiple sclerosis patients who discontinue disease modifying therapy against medical advice. In: 31st Congress of the European Committee for treatment and research in multiple sclerosis, ECTRIMS: Mult Scler; 2015, p. 278 Glusman MB, Roberg B, Thelen J, et al. Patient-provider communication and perceived autonomy support among multiple sclerosis patients who discontinue disease modifying therapy against medical advice. In: 31st Congress of the European Committee for treatment and research in multiple sclerosis, ECTRIMS: Mult Scler; 2015, p. 278
44.
go back to reference Nazareth TA, Rava AR, Polyakov JL, et al. Relapse prevalence, symptoms, and health care engagement: patient insights from the multiple sclerosis in America 2017 survey. Mult Scler Relat Disord. 2018;26:219–34.PubMedCrossRef Nazareth TA, Rava AR, Polyakov JL, et al. Relapse prevalence, symptoms, and health care engagement: patient insights from the multiple sclerosis in America 2017 survey. Mult Scler Relat Disord. 2018;26:219–34.PubMedCrossRef
45.
go back to reference Rinon A, Buch M, Holley D, Verdun E. The MS choices survey: findings of a study assessing physician and patient perspectives on living with and managing multiple sclerosis. Patient Prefer Adherence. 2011;5:629–43.PubMedPubMedCentral Rinon A, Buch M, Holley D, Verdun E. The MS choices survey: findings of a study assessing physician and patient perspectives on living with and managing multiple sclerosis. Patient Prefer Adherence. 2011;5:629–43.PubMedPubMedCentral
46.
go back to reference Sempere AP, Vera-Lopez V, Gimenez-Martinez J, et al. Using a multidimensional unfolding approach to assess multiple sclerosis patient preferences for disease-modifying therapy: a pilot study. Patient Prefer Adherence. 2017;11:995–9.PubMedPubMedCentralCrossRef Sempere AP, Vera-Lopez V, Gimenez-Martinez J, et al. Using a multidimensional unfolding approach to assess multiple sclerosis patient preferences for disease-modifying therapy: a pilot study. Patient Prefer Adherence. 2017;11:995–9.PubMedPubMedCentralCrossRef
47.
go back to reference Tintore M, Alexander M, Costello K, et al. The state of multiple sclerosis: current insight into the patient/health care provider relationship, treatment challenges, and satisfaction. Patient Prefer Adherence. 2017;11:33–45.PubMedCrossRef Tintore M, Alexander M, Costello K, et al. The state of multiple sclerosis: current insight into the patient/health care provider relationship, treatment challenges, and satisfaction. Patient Prefer Adherence. 2017;11:33–45.PubMedCrossRef
48.
go back to reference Agashivala N, Wu N, Abouzaid S, et al. Compliance to fingolimod and other disease modifying treatments in multiple sclerosis patients, a retrospective cohort study. BMC Neurol. 2013;13:138.PubMedPubMedCentralCrossRef Agashivala N, Wu N, Abouzaid S, et al. Compliance to fingolimod and other disease modifying treatments in multiple sclerosis patients, a retrospective cohort study. BMC Neurol. 2013;13:138.PubMedPubMedCentralCrossRef
49.
go back to reference Bergvall N, Petrilla AA, Karkare SU, et al. Persistence with and adherence to fingolimod compared with other disease-modifying therapies for the treatment of multiple sclerosis: a retrospective US claims database analysis. J Med Econ. 2014;17:696–707.PubMedCrossRef Bergvall N, Petrilla AA, Karkare SU, et al. Persistence with and adherence to fingolimod compared with other disease-modifying therapies for the treatment of multiple sclerosis: a retrospective US claims database analysis. J Med Econ. 2014;17:696–707.PubMedCrossRef
50.
go back to reference Heesen C, Kleiter I, Nguyen F, et al. Risk perception in natalizumab-treated multiple sclerosis patients and their neurologists. Mult Scler. 2010;16:1507–12.PubMedCrossRef Heesen C, Kleiter I, Nguyen F, et al. Risk perception in natalizumab-treated multiple sclerosis patients and their neurologists. Mult Scler. 2010;16:1507–12.PubMedCrossRef
51.
go back to reference Johnson FR, Van Houtven G, Ozdemir S, et al. Multiple sclerosis patients’ benefit-risk preferences: serious adverse event risks versus treatment efficacy. J Neurol. 2009;256:554–62.PubMedCrossRef Johnson FR, Van Houtven G, Ozdemir S, et al. Multiple sclerosis patients’ benefit-risk preferences: serious adverse event risks versus treatment efficacy. J Neurol. 2009;256:554–62.PubMedCrossRef
52.
go back to reference Kasper J, Kopke S, Muhlhauser I, Nubling M, Heesen C. Informed shared decision making about immunotherapy for patients with multiple sclerosis (ISDIMS): a randomized controlled trial. Eur J Neurol. 2008;15:1345–52.PubMedCrossRef Kasper J, Kopke S, Muhlhauser I, Nubling M, Heesen C. Informed shared decision making about immunotherapy for patients with multiple sclerosis (ISDIMS): a randomized controlled trial. Eur J Neurol. 2008;15:1345–52.PubMedCrossRef
53.
go back to reference Kopke S, Kern S, Ziemssen T, et al. Evidence-based patient information programme in early multiple sclerosis: a randomised controlled trial. J Neurol Neurosurg Psychiatry. 2014;85:411–8.PubMedCrossRef Kopke S, Kern S, Ziemssen T, et al. Evidence-based patient information programme in early multiple sclerosis: a randomised controlled trial. J Neurol Neurosurg Psychiatry. 2014;85:411–8.PubMedCrossRef
54.
go back to reference Poulos C, Kinter E, Yang JC, et al. Patient preferences for injectable treatments for multiple sclerosis in the United States: a discrete-choice experiment. Patient. 2016;9:171–80.PubMedCrossRef Poulos C, Kinter E, Yang JC, et al. Patient preferences for injectable treatments for multiple sclerosis in the United States: a discrete-choice experiment. Patient. 2016;9:171–80.PubMedCrossRef
55.
go back to reference Poulos C, Kinter E, Yang JC, et al. A discrete-choice experiment to determine patient preferences for injectable multiple sclerosis treatments in Germany. Ther Adv Neurol Disord. 2016;9:95–104.PubMedPubMedCentralCrossRef Poulos C, Kinter E, Yang JC, et al. A discrete-choice experiment to determine patient preferences for injectable multiple sclerosis treatments in Germany. Ther Adv Neurol Disord. 2016;9:95–104.PubMedPubMedCentralCrossRef
56.
go back to reference Thakur K, Manuel L, Tomlinson M. Autoinjectors for administration of interferon beta-1b in multiple sclerosis: patient preferences and the ExtaviPro 30G and Betacomfort(®) devices. Pragmat Obs Res. 2013;4:19–26.PubMedPubMedCentralCrossRef Thakur K, Manuel L, Tomlinson M. Autoinjectors for administration of interferon beta-1b in multiple sclerosis: patient preferences and the ExtaviPro 30G and Betacomfort(®) devices. Pragmat Obs Res. 2013;4:19–26.PubMedPubMedCentralCrossRef
57.
go back to reference Wicks P, Thomas NP, Kotowksy N, et al. US patient perspectives on the multiple sclerosis treatment experience: results of a US web-based survey. In: 31st Congress of the European committee for treatment and research in multiple sclerosis, ECTRIMS: Mult Scler; 2015, p. 278. Wicks P, Thomas NP, Kotowksy N, et al. US patient perspectives on the multiple sclerosis treatment experience: results of a US web-based survey. In: 31st Congress of the European committee for treatment and research in multiple sclerosis, ECTRIMS: Mult Scler; 2015, p. 278.
58.
go back to reference Wicks P, Brandes D, Park J, et al. Preferred features of oral treatments and predictors of non-adherence: two web-based choice experiments in multiple sclerosis patients. Interact J Med Res. 2015;4:e6.PubMedPubMedCentralCrossRef Wicks P, Brandes D, Park J, et al. Preferred features of oral treatments and predictors of non-adherence: two web-based choice experiments in multiple sclerosis patients. Interact J Med Res. 2015;4:e6.PubMedPubMedCentralCrossRef
59.
go back to reference Stacey D, Hill S, McCaffery K, et al. Shared decision making interventions: theoretical and empirical evidence with implications for health literacy. Stud Health Technol Inform. 2017;240:263–83.PubMed Stacey D, Hill S, McCaffery K, et al. Shared decision making interventions: theoretical and empirical evidence with implications for health literacy. Stud Health Technol Inform. 2017;240:263–83.PubMed
60.
go back to reference Kopke S, Solari A, Rahn A, et al. Information provision for people with multiple sclerosis. Cochrane Database Syst Rev. 2018;10:CD008757.PubMed Kopke S, Solari A, Rahn A, et al. Information provision for people with multiple sclerosis. Cochrane Database Syst Rev. 2018;10:CD008757.PubMed
63.
go back to reference Armstrong MJ, Shulman LM, Vandigo J, Mullins CD. Patient engagement and shared decision-making: what do they look like in neurology practice? Neurol Clin Pract. 2016;6:190–7.PubMedPubMedCentralCrossRef Armstrong MJ, Shulman LM, Vandigo J, Mullins CD. Patient engagement and shared decision-making: what do they look like in neurology practice? Neurol Clin Pract. 2016;6:190–7.PubMedPubMedCentralCrossRef
64.
go back to reference Bomhof-Roordink H, Gartner FR, Stiggelbout AM, Pieterse AH. Key components of shared decision making models: a systematic review. BMJ Open. 2019;9:e031763.PubMedPubMedCentralCrossRef Bomhof-Roordink H, Gartner FR, Stiggelbout AM, Pieterse AH. Key components of shared decision making models: a systematic review. BMJ Open. 2019;9:e031763.PubMedPubMedCentralCrossRef
65.
go back to reference Giovannoni G, Hawkes C, Lechner-Scott J, et al. The COVID-19 pandemic and the use of MS disease-modifying therapies. Mult Scler Relat Disord. 2020;39:102073.PubMedPubMedCentralCrossRef Giovannoni G, Hawkes C, Lechner-Scott J, et al. The COVID-19 pandemic and the use of MS disease-modifying therapies. Mult Scler Relat Disord. 2020;39:102073.PubMedPubMedCentralCrossRef
66.
go back to reference Zrzavy T, Wimmer I, Rommer PS, Berger T. Immunology of COVID-19 and disease-modifying therapies: the good, the bad and the unknown. Eur J Neurol. 2021;28:3503–16.PubMedCrossRef Zrzavy T, Wimmer I, Rommer PS, Berger T. Immunology of COVID-19 and disease-modifying therapies: the good, the bad and the unknown. Eur J Neurol. 2021;28:3503–16.PubMedCrossRef
67.
go back to reference Osier F, Ting JPY, Fraser J, et al. The global response to the COVID-19 pandemic: how have immunology societies contributed? Nat Rev Immunol. 2020;20:594–602.PubMedPubMedCentralCrossRef Osier F, Ting JPY, Fraser J, et al. The global response to the COVID-19 pandemic: how have immunology societies contributed? Nat Rev Immunol. 2020;20:594–602.PubMedPubMedCentralCrossRef
68.
go back to reference Okan O, Bollweg TM, Berens EM, et al. Coronavirus-related health literacy: a cross-sectional study in adults during the COVID-19 infodemic in Germany. Int J Environ Res Public Health. 2020;17:5503.PubMedCentralCrossRef Okan O, Bollweg TM, Berens EM, et al. Coronavirus-related health literacy: a cross-sectional study in adults during the COVID-19 infodemic in Germany. Int J Environ Res Public Health. 2020;17:5503.PubMedCentralCrossRef
69.
go back to reference Barnett MH, Sutton I. The pathology of multiple sclerosis: a paradigm shift. Curr Opin Neurol. 2006;19:242–7.PubMedCrossRef Barnett MH, Sutton I. The pathology of multiple sclerosis: a paradigm shift. Curr Opin Neurol. 2006;19:242–7.PubMedCrossRef
70.
go back to reference Comi G, Bar-Or A, Lassmann H, et al. The role of B cells in multiple sclerosis and related disorders. Ann Neurol. 2021;89:13–23.PubMedCrossRef Comi G, Bar-Or A, Lassmann H, et al. The role of B cells in multiple sclerosis and related disorders. Ann Neurol. 2021;89:13–23.PubMedCrossRef
Metadata
Title
A Targeted Literature Search and Phenomenological Review of Perspectives of People with Multiple Sclerosis and Healthcare Professionals of the Immunology of Disease-Modifying Therapies
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
Publication date
24-05-2022
Publisher
Springer Healthcare
Published in
Neurology and Therapy / Issue 3/2022
Print ISSN: 2193-8253
Electronic ISSN: 2193-6536
DOI
https://doi.org/10.1007/s40120-022-00349-5

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