scholarly journals Multiple sclerosis risk perception and acceptance for Brazilian patients

2018 ◽  
Vol 76 (1) ◽  
pp. 6-12
Author(s):  
Denis Bernardi Bichuetti ◽  
Carolina Azze Franco ◽  
Isaac Elias ◽  
Andreia C. R. Mendonça ◽  
Lorraine Fiama Diniz Carvalho ◽  
...  
Keyword(s):  
Multiple Sclerosis ◽  
Decision Making ◽  
Risk Perception ◽  
Progressive Multifocal Leukoencephalopathy ◽  
Severe Disease ◽  
Shared Decision ◽  
Factors Associated ◽  
Multiple Sclerosis Risk ◽  
Relapsing Remitting ◽  
Risk Acceptance

ABSTRACT The perception of multiple sclerosis (MS) severity and risk associated with therapies might influence shared decision making in different countries. We investigated the perception of MS severity and factors associated with risk acceptance in Brazil in 96 patients with relapsing-remitting MS using a standardized questionnaire and compared this with two European cohorts. Multiple sclerosis was perceived as a very severe disease and the risk of developing progressive multifocal leukoencephalopathy due to natalizumab was seen as moderate to high. Seventy-six percent considered a risk of 1:1,000, or higher, an impediment for natalizumab use. Older age was the only variable associated with higher risk acceptance and our patients showed a more conservative profile than German and Spanish patients. Our patients perceived MS severity and progressive multifocal leukoencephalopathy risk similarly to elsewhere, but their willingness to take risks was more conservative. This should be considered when discussing therapeutic options and it might have an impact on guideline adaptations.

scholarly journals Implementation of Shared Decision Making for Lung Cancer Screening Among the Privately Insured Nonelderly

2021 ◽  
Vol 6 (1) ◽  
pp. 238146832098477
Author(s):  
Ya-Chen Tina Shih ◽  
Ying Xu ◽  
Lisa M. Lowenstein ◽  
Robert J. Volk
Keyword(s):  
Lung Cancer ◽  
Decision Making ◽  
Cancer Screening ◽  
Shared Decision Making ◽  
Private Insurance ◽  
Lung Cancer Screening ◽  
Shared Decision ◽  
Factors Associated ◽  
Coverage Policy ◽  
Privately Insured

Introduction. The Centers for Medicare & Medicaid Services requires a written order of shared decision making (SDM) visit in its coverage policy for low-dose computed tomography (LDCT) for lung cancer screening (LCS). With screening eligibility starting at age 55, private insurance plans will likely adopt this coverage policy. This study examined the implementation of SDM in the context of LCS among the privately insured. Methods. We constructed two study cohorts from MarketScan Commercial Claims and Encounters database 2016-2017: a LDCT cohort who received LDCT for LCS and an SDM cohort who had an LCS-related SDM visit. For the LDCT cohort, we examined the trend and factors associated with the receipt of SDM within 3 months prior to LDCT. For the SDM cohort, we studied the trend and factors associated with LDCT within 3 months after an SDM visit. Results. For privately insured adults aged <64, 93% (19,681/21,084) of the LDCT cohort did not have a billing claim indicating SDM, although the uptake of SDM increased from 3.1% in 1Q2016 to 8.2% in 4Q2017 ( P < 0.0001). For the SDM cohort, 46% (948/2048) did not have a claim for an LDCT for lung cancer screening in the 3 months after the SDM visit; this percentage increased from 29.5% in 1Q2016 to 61.8% in 3Q2017 ( P < 0.0001). Limitations. Findings cannot be generalized to other nonelderly adults without private insurance. Additionally, the rate of SDM identified from claims may be underreported. Conclusions. We found a growing but low uptake of SDM among privately insured individuals who underwent LDCT. The higher rate of LDCT in the SDM cohort than the rate reported in national studies emphasized the importance of patient awareness.

scholarly journals Exploring the Cost Effectiveness of Shared Decision Making for Choosing between Disease-Modifying Drugs for Relapsing-Remitting Multiple Sclerosis in the Netherlands: A State Transition Model

2020 ◽  
Vol 40 (8) ◽  
pp. 1003-1019
Author(s):  
Ingrid E. H. Kremer ◽  
Mickael Hiligsmann ◽  
Josh Carlson ◽  
Marita Zimmermann ◽  
Peter J. Jongen ◽  
...  
Keyword(s):  
Decision Making ◽  
Cost Effectiveness ◽  
Shared Decision Making ◽  
State Transition ◽  
Transition Model ◽  
Shared Decision ◽  
Relapsing Remitting ◽  
State Transition Model ◽  
The Cost ◽  
Relapsing Remitting Multiple Sclerosis

Background Up to 31% of patients with relapsing-remitting multiple sclerosis (RRMS) discontinue treatment with disease-modifying drug (DMD) within the first year, and of the patients who do continue, about 40% are nonadherent. Shared decision making may decrease nonadherence and discontinuation rates, but evidence in the context of RRMS is limited. Shared decision making may, however, come at additional costs. This study aimed to explore the potential cost-effectiveness of shared decision making for RRMS in comparison with usual care, from a (limited) societal perspective over a lifetime. Methods An exploratory economic evaluation was conducted by adapting a previously developed state transition model that evaluates the cost-effectiveness of a range of DMDs for RRMS in comparison with the best supportive care. Three potential effects of shared decision making were explored: 1) a change in the initial DMD chosen, 2) a decrease in the patient’s discontinuation in using the DMD, and 3) an increase in adherence to the DMD. One-way and probabilistic sensitivity analyses of a scenario that combined the 3 effects were conducted. Results Each effect separately and the 3 effects combined resulted in higher quality-adjusted life years (QALYs) and costs due to the increased utilization of DMD. A decrease in discontinuation of DMDs influenced the incremental cost-effectiveness ratio (ICER) most. The combined scenario resulted in an ICER of €17,875 per QALY gained. The ICER was sensitive to changes in several parameters. Conclusion This study suggests that shared decision making for DMDs could potentially be cost-effective, especially if shared decision making would help to decrease treatment discontinuation. Our results, however, may depend on the assumed effects on treatment choice, persistence, and adherence, which are actually largely unknown.

scholarly journals Patients with neuromyelitis optica have a more severe disease than patients with relapsingremitting multiple sclerosis, including higher risk of dying of a demyelinating disease

2013 ◽  
Vol 71 (5) ◽  
pp. 275-279 ◽  
Author(s):  
Denis Bernardi Bichuetti ◽  
Enedina Maria Lobato de Oliveira ◽  
Nilton Amorin de Souza ◽  
Mar Tintoré ◽  
Alberto Alain Gabbai
Keyword(s):  
Multiple Sclerosis ◽  
Neuromyelitis Optica ◽  
Disease Duration ◽  
Demyelinating Disease ◽  
Age Of Onset ◽  
Severe Disease ◽  
Expanded Disability Status Scale ◽  
Disability Status ◽  
Relapsing Remitting ◽  
Relapsing Remitting Multiple Sclerosis

Although neuromyelitis optica (NMO) is known to be a more severe disease than relapsing-remitting multiple sclerosis (RRMS), few studies comparing both conditions in a single center have been done.Methods:Comparison of our previously published cohort of 41 NMO patients with 177 RRMS patients followed in the same center, from 1994 to 2007.Results:Mean age of onset was 32.6 for NMO and 30.2 for RRMS (p=0.2062) with mean disease duration of 7.4 years for NMO and 10.3 years for RRMS. Patients with NMO had a higher annualized relapse rate (1.0 versus 0.8, p=0.0013) and progression index (0.9 versus 0.6, p≪0.0001), with more patients reaching expanded disability status scale (EDSS) 6.0 (39 versus 17%, p=0.0036). The odds ratio for reaching EDSS 6.0 and being deceased due to NMO in comparison to RRMS were, respectively, 3.14 and 12.15.Conclusion:Patients with NMO have a more severe disease than patients with RRMS, including higher risk of dying of a demyelinating disease.

scholarly journals When to Initiate Disease-Modifying Drugs for Relapsing Remitting Multiple Sclerosis in Adults?

2011 ◽  
Vol 2011 ◽  
pp. 1-11 ◽  
Author(s):  
Mona Alkhawajah ◽  
Joel Oger
Keyword(s):  
Multiple Sclerosis ◽  
Decision Making ◽  
Glatiramer Acetate ◽  
Major Question ◽  
Disease Modifying Drugs ◽  
Relapsing Remitting ◽  
Disease Modifying ◽  
Remitting Multiple Sclerosis ◽  
Relapsing Remitting Multiple Sclerosis

For patients with Relapsing Remitting Multiple Scierosis Beta Interfaerons and Glatiramer Acetate were the first to be licensed for treatment. This review deals with one major question: when to initiate therapy? Through exploring the unique characteristics of the disease and treatement we suggest an approach that should be helpful in the process of decision-making.

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.

Desirability and acceptability of a treatment-sequencing model in relapsing-remitting multiple sclerosis: A health technology assessment perspective

2020 ◽  
Vol 36 (2) ◽  
pp. 162-166
Author(s):  
Marjanne A. Piena ◽  
Olaf Schoeman ◽  
Gerard T. Harty ◽  
Schiffon L. Wong
Keyword(s):  
Multiple Sclerosis ◽  
Decision Making ◽  
Health Technology Assessment ◽  
Technology Assessment ◽  
Health Technology ◽  
Primary Data ◽  
Relapsing Remitting ◽  
Treatment Sequencing ◽  
Remitting Multiple Sclerosis ◽  
Relapsing Remitting Multiple Sclerosis

ObjectiveGather health technology assessment (HTA) experts' insights on the desirability and acceptability of treatment-sequencing models applied to relapsing-remitting multiple sclerosis (RRMS).Data source/study settingPrimary data.Study designIn-depth double-blind semi-structured telephone interviews.Data collection/extraction methodsGeneral themes were extracted from qualitative interviews.Principal findingsAlthough experts confirmed the importance of evaluating the clinical and cost-effectiveness of treatments as part of a sequence, the current HTA decision making framework is not conducive to this. Developing an RRMS treatment-sequencing model that meets HTA requirements is difficult, in particular due to scarcity of effectiveness data in later treatment lines.ConclusionsAt present, a treatment-sequencing model for RRMS may be desirable yet not requested by HTA bodies for their decision making. However, there could be other areas where a treatment-sequencing model for RRMS is of use.

Blood miRNA expression pattern is a possible risk marker for natalizumab-associated progressive multifocal leukoencephalopathy in multiple sclerosis patients

2014 ◽  
Vol 20 (14) ◽  
pp. 1851-1859 ◽  
Author(s):  
M Muñoz-Culla ◽  
H Irizar ◽  
T Castillo-Triviño ◽  
M Sáenz-Cuesta ◽  
L Sepúlveda ◽  
...  
Keyword(s):  
Multiple Sclerosis ◽  
Progressive Multifocal Leukoencephalopathy ◽  
Differential Expression ◽  
Expression Pattern ◽  
Mirna Expression ◽  
Disease Biomarkers ◽  
Mirna Expression Pattern ◽  
Increased Risk ◽  
Relapsing Remitting ◽  
Multiple Sclerosis Patients

Background: Natalizumab has shown its efficacy in reducing multiple sclerosis (MS) relapses and progression of disability; however, it has been associated with an increased risk of developing progressive multifocal leukoencephalopathy (PML). The differential expression of microRNA (miRNA), the small non-coding RNAs that regulate gene expression, in natalizumab-treated patients has been reported and miRNA have also been described as good candidates for disease biomarkers. Objective: To characterize the effect of natalizumab therapy on the miRNA expression pattern and to search for miRNAs that can predict PML on an individual basis. Methods: The expression of 754 microRNAs was measured in blood samples from 19 relapsing–remitting MS patients at three time points during natalizumab therapy, using TaqMan OpenArray panels. Two patients included in this study developed PML after more than 2 years of therapy. Results: We found that the expression level of three miRNAs (let-7c, miR-125a-5p and miR-642) was affected after 6 months of therapy (t6). Furthermore, we observed a differential expression of another three miRNAs (miR-320, miR-320b and miR-629) between the PML and non-PML groups after 12 months of treatment (t12); and a positive correlation was found between therapy time and the expression of miR-320. Conclusions: Natalizumab modified the expression levels of three miRNAs after a 6-month treatment. We suggest miR-320, miR-320b and miR-629 as possible biomarkers for individual PML risk assessment.

scholarly journals Patient autonomy in dental medical decision making – demonstrating the need for shared decision making

2020 ◽  
Author(s):  
Mareike Benecke ◽  
Jürgen Kasper ◽  
Christoph Heesen ◽  
Nina Schäffler ◽  
Daniel Reissmann
Keyword(s):  
Multiple Sclerosis ◽  
Decision Making ◽  
General Practice ◽  
Shared Decision Making ◽  
Treatment Decisions ◽  
Medical Decision ◽  
Shared Decision ◽  
Cross Sectional Survey ◽  
Cross Sectional ◽  
Study Results

Abstract Background: Evidence-based Dentistry (EBD), decision aids, patient preferences and autonomy preferences (AP) play an important role in shared decision making (SDM) and are useful tools in the process of medical and dental decisions as well as in developing of quality criteria for decision making in many fields of health care. However, there aren’t many studies on SDM and AP in the field of dentistry. This study aimed at exploring patients’ autonomy preferences in dentistry in comparison to other medical domains. Methods: As a first step, a consecutive sample of 100 dental patients and 16 dentists was recruited at a university-based prosthodontic clinic to assess and compare patients’ and dentists’ preferences regarding their roles in dental decision making for commonly performed diagnostic and treatment decisions using the Control Preference Scale (CPS). This was followed by a cross sectional survey to study autonomy preferences in three cohorts of 100 patients each recruited from general practices, a multiple sclerosis clinic, and a university-based prosthodontic clinic . A questionnaire with combined items from the Autonomy Preference Index (API) to assess general and the CPS to assess specific preferences was used in this process. Results: Dentists were slightly less willing to deliver control than patients willing to enact autonomy. Decisions about management of tooth loss were however considered relevant for a shared decision making by both parties. Highest AP was expressed by people with multiple sclerosis, lowest by patients in dentistry (CPS means: dentistry 2.5, multiple sclerosis 2.1, general practice 2.4, p=.035). Patients analysis showed considerable differences in autonomy preferences referring to different decision types (p<.001). More autonomy was needed for treatment decisions in comparison to diagnostic decisions, for trivial compared to severe conditions, and for dental care compared to general practice (all: p<.001). Conclusion: The study results showed substantial relevance of patient participation in decision making in dentistry. Furthermore, a need has been discovered to refer to specific medical decisions instead of assessing autonomy preferences in general.

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