Perspectives of individuals with multiple sclerosis on discontinuation of disease-modifying therapies

2019 ◽  
Vol 26 (12) ◽  
pp. 1581-1589
Author(s):  
Marisa P McGinley ◽  
Philip A Cola ◽  
Robert J Fox ◽  
Jeffrey A Cohen ◽  
John J Corboy ◽  
...  
Keyword(s):  
Multiple Sclerosis ◽  
Decision Making ◽  
Structural Equation ◽  
Descriptive Analysis ◽  
Equation Modeling ◽  
Decision Making Process ◽  
Inclusion Criteria ◽  
Research Committee ◽  
Disease Modifying Therapies ◽  
Disease Modifying

Background: Therapeutic research in multiple sclerosis (MS) has focused on the development of treatments with little investigation regarding the possibility of discontinuation of disease-modifying therapies (DMTs). Objective: To understand the opinion of individuals with MS concerning stopping DMTs and the factors that influence the decision-making process. Methods: A mixed method approach was used starting with three focus groups from which a survey was developed. This survey was sent to 1000 participants in the North American Research Committee on Multiple Sclerosis registry who met inclusion criteria (age ⩾45 years; on most recent DMT for ⩾5 years). Descriptive analysis and structural equation modeling were used. Results: Of 1000 participants receiving the survey, 377 provided complete responses and met inclusion criteria. Only 11.9% of participants reported that if their disease was considered stable, they would consider coming off medications. A high level of external locus of control in influential others such as physicians significantly decreased the likelihood of considering discontinuation. Conclusions: Most individuals with MS report being unlikely to consider stopping MS therapy if their disease was considered “non-active.” As the results of studies concerning DMT discontinuation are obtained, information from providers will be an important part of individuals’ decision-making process.

scholarly journals Patients experiences with multiple sclerosis disease-modifying therapies in daily life – a qualitative interview study

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Anna Sippel ◽  
Karin Riemann-Lorenz ◽  
Jutta Scheiderbauer ◽  
Ingo Kleiter ◽  
Rebecca Morrison ◽  
...  
Keyword(s):  
Multiple Sclerosis ◽  
Decision Making ◽  
Daily Life ◽  
Interview Study ◽  
Disease Modifying Therapies ◽  
Qualitative Interview Study ◽  
Relapsing Remitting ◽  
Disease Modifying ◽  
Remitting Multiple Sclerosis ◽  
Relapsing Remitting Multiple Sclerosis

Abstract Background Besides coping with a disease with many uncertainties, people with relapsing-remitting multiple sclerosis face complex decisions concerning disease-modifying therapies (DMTs). In an interview study, we aimed to assess patients’ experiences with DMTs. Methods Problem-centred interviews were conducted with 50 people with relapsing-remitting multiple sclerosis in Germany using maximum variation sampling and covering all licensed DMTs. Data were analysed thematically using deductive and inductive categories. Results 47 of 50 patients had treatment with at least one of the approved DMTs. The main themes were: (1) starting a DMT, (2) switching to another DMT, (3) discontinuing a DMT, and (4) multiple sclerosis without starting a DMT. Different intercorrelated factors influenced the decision-making processes for or against a DMT. Individual experiences with DMTs in daily life contained the effort in administration, success, and failure of DMTs, coping strategies and well-being without DMTs. The decision-making process for or against a DMT and the use of those treatments can be understood as a constant, continually shifting process, complicated by different factors, which change over time. Experiences with DMTs were characterized by attempts to handle uncertainty and to (re)gain control and integrate adaptivity into one’s life. Conclusions The study provides a rich and nuanced amount of patients’ experiences with DMTs. The findings demonstrate the importance for practitioners to look at current life circumstances of patients with multiple sclerosis when recommending a DMT and to promote and enable patients to make informed decisions.

Webrooming and showrooming: a multi-stage consumer decision process

2021 ◽  
Vol ahead-of-print (ahead-of-print) ◽  
Author(s):  
Srabanti Mukherjee ◽  
Swagato Chatterjee
Keyword(s):  
Decision Making ◽  
Information Search ◽  
Structural Equation ◽  
Product Type ◽  
Equation Modeling ◽  
Purchase Decision ◽  
Decision Making Process ◽  
Content Type ◽  
Channel Choice ◽  
Multi Stage

PurposeThe purpose of this research is to propose and validate a theoretical framework explaining web-rooming and showrooming as a multi-stage decision-making process. The authors have used consumer purchase decision-making theories to propose a model that identifies showrooming and webrooming as a combination of two decisions, channel choice during information search and channel choice during actual purchase. Further, the authors explored how various antecedents of showrooming and webrooming have differential effects on various stages of a purchase decision-making process and how product type moderates the relationships.Design/methodology/approachThe authors have conducted empirical research, whereby 243 responses were obtained from a cross-sectional survey. The authors have used structural equation modeling and multiple regression analysis to validate our theoretical model.FindingsWebrooming or showrooming is a multi-stage decision-making process for the consumers. First, consumers decide whether to search online or offline and then whether to buy online and offline. Different individual, purchase context-related and channel related factors impact these decisions. Product type governs which variables will be more important than others.Originality/valueThe research looks to enhance the understanding of the consumer's decision-making process during showrooming and webrooming while also helping retailers design and implement appropriate strategies that could affect consumers during information search and actual purchase.

scholarly journals Treatment Discontinuation and Disease Progression with Injectable Disease-Modifying Therapies

2013 ◽  
Vol 15 (4) ◽  
pp. 194-201 ◽  
Author(s):  
Robert J. Fox ◽  
Amber R. Salter ◽  
Tuula Tyry ◽  
Jennifer Sun ◽  
Xiaojun You ◽  
...  
Keyword(s):  
Multiple Sclerosis ◽  
Disease Progression ◽  
Clinical Decision Making ◽  
Medication Compliance ◽  
Clinical Decision ◽  
Research Committee ◽  
The North ◽  
Disease Modifying Therapies ◽  
Patient Reported ◽  
Disease Modifying

Injectable first-line disease-modifying therapies (DMTs) for multiple sclerosis (MS) are generally prescribed for continuous use. Accordingly, the various factors that influence patient persistence with treatment and that can lead some patients to switch medications or discontinue treatment may affect clinical outcomes. Using data from the North American Research Committee on Multiple Sclerosis (NARCOMS) database, this study evaluated participants' reasons for discontinuation of injectable DMTs as well as the relationship between staying on therapy and sustained patient-reported disease progression and annualized relapse rates. Participants selected their reason(s) for discontinuation from among 16 possible options covering the categories of efficacy, safety, tolerability, and burden, with multiple responses permitted. Both unadjusted data and data adjusted for baseline age, disease duration, disability, and sex were evaluated. Discontinuation profiles varied among DMTs. Participants on intramuscular interferon beta-1a (IM IFNβ-1a) and glatiramer acetate (GA) reported the fewest discontinuations based on safety concerns, although GA was associated with reports of higher burden and lower efficacy than other therapies. Difficulties with tolerability were more often reported as a reason for discontinuing subcutaneous (SC) IFNβ-1a than as a reason for discontinuing IM IFNβ-1a, GA, or SC IFNβ-1b. In the persistent therapy cohort, less patient-reported disability progression was reported with IM IFNβ-1a treatment than with SC IFNβ-1a, IFNβ-1b, or GA. These findings have relevance to clinical decision making and medication compliance in MS patient care.

scholarly journals Disease-modifying therapies modulate retinal atrophy in multiple sclerosis

Neurology ◽  
2017 ◽  
Vol 88 (6) ◽  
pp. 525-532 ◽  
Author(s):  
Julia Button ◽  
Omar Al-Louzi ◽  
Andrew Lang ◽  
Pavan Bhargava ◽  
Scott D. Newsome ◽  
...  
Keyword(s):  
Multiple Sclerosis ◽  
First Year ◽  
Time Interval ◽  
Inclusion Criteria ◽  
Disease Modifying Therapies ◽  
Relapsing Remitting ◽  
Retinal Atrophy ◽  
Disease Modifying ◽  
Relapsing Remitting Multiple Sclerosis

Objective:To retrospectively investigate whether disease-modifying therapies (DMTs) exert differential effects on rates of retinal atrophy in relapsing-remitting multiple sclerosis (RRMS), as assessed using optical coherence tomography (OCT).Methods:A total of 402 patients with RRMS followed at the Johns Hopkins MS Center who underwent Cirrus-HD OCT were assessed for eligibility. Inclusion criteria included at least 1 year of OCT follow-up and adherence to a single DMT during the period of follow-up. Combined thickness of the ganglion cell + inner plexiform (GCIP) and other retinal layers was computed utilizing automated macular segmentation. Retinal thickness changes were analyzed using mixed-effects linear regression.Results:The effects of glatiramer acetate (GA; n = 48), natalizumab (NAT; n = 46), and interferon-β-1a subcutaneously (IFNSC; n = 35) and intramuscularly (IFNIM; n = 28) were assessed. Baseline analyses revealed no significant differences between groups in terms of age, sex, optic neuritis history, or follow-up duration. During follow-up, relative to NAT-treated patients, IFNSC- and GA-treated patients exhibited 0.37 μm/y (p < 0.001) and 0.14 μm/y (p = 0.035) faster rates of GCIP thinning, respectively, adjusting for the interval between initiation of DMT and OCT monitoring (gap time), age, sex, relapses, and disease duration. In the IFNSC group, GCIP thinning was 1.53 μm/y faster during the first year of therapy vs during the time interval afterwards (p < 0.001).Conclusions:Rates of GCIP atrophy in patients with RRMS vary according to DMT utilization. Our findings support OCT for monitoring neurodegenerative treatment effects in the retina, an easily accessible tissue, and as a practical outcome measure in RRMS clinical trials.

scholarly journals Development and Evaluation of a Website With Patients Experiences of Multiple Sclerosis: A Mixed Methods Study

2021 ◽  
Author(s):  
Anna Sippel ◽  
Jutta Scheiderbauer ◽  
Désirée Eklund ◽  
Sigrid Arnade ◽  
Stephan Schmidt ◽  
...  
Keyword(s):  
Multiple Sclerosis ◽  
Decision Making ◽  
Mixed Methods ◽  
Health Care Professionals ◽  
Visual Information ◽  
Patient Experiences ◽  
Management Options ◽  
Disease Modifying Therapies ◽  
Disease Modifying ◽  
Qualitative Responses

Abstract Background A variety of management options (e.g., disease-modifying therapy, lifestyle interventions, rehabilitation) are available for persons with relapsing-remitting multiple sclerosis (MS). Besides coping with the diagnosis, persons with MS have to make complex decisions, e.g., regarding disease-modifying therapies. In addition to factual information, reports of patient experiences may support other patients in their decision-making. Therefore, we developed a website presenting patient experiences illustrated by video, audio and text files. This study aimed to test the acceptability and usability of a website with patient experiences with MS. Methods A mixed-methods approach was applied. A total of 69 participants visited the German “Patient Experiences with MS (PExMS)” website and among them, 50 persons with MS and 6 experts completed an online survey. In total, 18 participants took part in telephone interviews or focus groups. Data from the survey were analysed using descriptive statistics. Qualitative data were analysed using thematic analysis. Results Both quantitative and qualitative responses suggest that the PExMS website was viewed positively by patients and experts. 94% of persons with MS agreed that the information was comprehensible and reliable. 54% felt encouraged to share their health problems with others after having studied the website. 74% claimed to use the website if they had to make a decision regarding their health. Qualitative responses deduced from the website fell into 5 key themes: (1) web design, appearance, and functionality, (2) content, (3) usability, (4) satisfaction, and (5) loyalty. The search for persons of similar age and with comparable experiences was a major driving force to navigate the website. The material on the website was perceived as diverse, covering both positive and negative experiences in daily living with MS. All participants greatly appreciated having access to other people’s experiences online and judged the material on the website as particularly helpful in decision-making for disease-modifying therapies. Conclusions The findings suggest that the PExMS website might have the potential to be a useful source of audio-visual information for persons with MS. Given the lack of websites available to patients with experiential information, health care professionals may be encouraged to routinely inform patients about this website at regular appointments.

Identification of patients with relapsing multiple sclerosis eligible for high-efficacy therapies

2021 ◽  
Author(s):  
José Meca-Lallana ◽  
Juan Antonio García-Merino ◽  
Sergio Martínez-Yélamos ◽  
Angela Vidal-Jordana ◽  
Lucienne Costa ◽  
...  
Keyword(s):  
Multiple Sclerosis ◽  
Decision Making ◽  
Expert Opinion ◽  
Second Line ◽  
High Efficacy ◽  
Clinical Evolution ◽  
Disease Modifying Therapies ◽  
Disease Modifying ◽  
Relapsing Multiple Sclerosis ◽  
Selection Of

Relapsing multiple sclerosis (RMS) presents a highly variable clinical evolution among patients, and its management should be personalized. Although there is no cure at present, effective disease-modifying therapies (DMTs) are available. Selection of the most appropriate DMT for each patient is influenced by several clinical, radiological and demographic aspects as well as personal preferences that, at times, are not covered in the regulatory criteria. This may be a source of difficulty, especially in certain situations where so-called ‘high-efficacy DMTs’ (usually considered second-line) could be of greater benefit to the patient. In this narrative review, we discuss evidence and experience, and propose a pragmatic guidance on decision-making with respect to the indication and management of high-efficacy DMT in adult patients with RMS based on expert opinion.

Impact of geomarketing and location determinants on business development and decision making

2018 ◽  
Vol 28 (1) ◽  
pp. 98-120 ◽  
Author(s):  
Veland Ramadani ◽  
Donika Zendeli ◽  
Shqipe Gerguri-Rashiti ◽  
Leo-Paul Dana
Keyword(s):  
Decision Making ◽  
Structural Equation ◽  
Secondary Data ◽  
Business Development ◽  
Primary Data ◽  
Equation Modeling ◽  
Decision Making Process ◽  
Content Type ◽  
Location Determinants

Purpose This paper aims to study and compare variables such as location, industry, socio-demographics and business factors of several companies located in Western Macedonia. Design/methodology/approach Research method is based on primary data the authors collected through questionnaires and secondary data obtained from State Statistical Office. Besides, the research sums up data classification of companies in the aspect of geomarketing and how location determinants and geo-information of certain cities can influence their business development and decision-making. Lastly, the results of data and Structural Equation Modeling integration are presented. Findings Since Republic of Macedonia is more than 25 years in transition, experts have often foreseen that companies in their country most of the time make intuitive decisions and do not take into account many elements during decision-making process in the business aspect. But on the other hand, results reveal interesting facts about companies involved in their research. For a majority of companies, the influence of geomarketing on business development is positive as long as during decision-making process its determinants have been taken into consideration and reviewed. Practical implications The paper helps the entrepreneurs to develop their businesses and decision-making process based on geomarketing determinants. Originality/value This is the first paper that investigates and compares variables such as location, industry, socio-demographics and business factors of companies located in Macedonia.

scholarly journals Understanding the Impact of Environmental Education on Tourists’ Future Visit Intentions to Leisure Farms in Mountain Regions

2019 ◽  
Vol 11 (6) ◽  
pp. 1567 ◽  
Author(s):  
Winitra Leelapattana ◽  
Shih-Yun Hsu ◽  
Weerapon Thongma ◽  
Chun Chen ◽  
Fu-Mei Chiang
Keyword(s):  
Decision Making ◽  
Environmental Education ◽  
Structural Equation ◽  
Sampling Method ◽  
Research Problem ◽  
Equation Modeling ◽  
Decision Making Process ◽  
Mountain Regions ◽  
The Social ◽  
The Impact

The research problem of this study is to understand whether people with higher level of EE are more likely to choose farm stays for their vacation. The main aim of this study is to investigate the causal relationship between an individual’s environmental education (EE) and their theory of planned behavior (TPB) decision-making process that leads to future visit intention. A convenient sampling method was used to survey visitors of Toucheng Leisure Farm in the mountain region of Taiwan; and a total of 600 responses were collected. Structural equation modeling (SEM) was used to analyze the data. The results showed that five of the six hypotheses were supported. This finding suggests that environmental education makes an individual more pro-environmental and susceptible to the social norms about environmental protection. Environmental education, however, does not affect the inconvenience or extra cost incurred by purchasing green products.

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