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      Patient Preference and Adherence (submit here)

      This international, peer-reviewed Open Access journal by Dove Medical Press focuses on the growing importance of patient preference and adherence throughout the therapeutic process. Sign up for email alerts here.

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      The state of multiple sclerosis: current insight into the patient/health care provider relationship, treatment challenges, and satisfaction

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          Abstract

          Background

          Managing multiple sclerosis (MS) treatment presents challenges for both patients and health care professionals. Effective communication between patients with MS and their neurologist is important for improving clinical outcomes and quality of life.

          Methods

          A closed-ended online market research survey was used to assess the current state of MS care from the perspective of both patients with MS (≥18 years of age) and neurologists who treat MS from Europe and the US and to gain insight into perceptions of treatment expectations/goals, treatment decisions, treatment challenges, communication, and satisfaction with care, based on current clinical practice.

          Results

          A total of 900 neurologists and 982 patients completed the survey, of whom 46% self-identified as having remitting-relapsing MS, 29% secondary progressive MS, and 11% primary progressive MS. Overall, patients felt satisfied with their disease-modifying therapy (DMT); satisfaction related to comfort in speaking with their neurologist and participation in their DMT decision-making process. Patients who self-identified as having relapsing-remitting MS were more likely to be very satisfied with their treatment. Top challenges identified by patients in managing their DMT were cost, side effects/tolerability of treatment, and uncertainty if treatment was working. Half of the patients reported skipping doses, but only 68% told their health care provider that they did so.

          Conclusion

          Several important differences in perception were identified between patients and neurologists concerning treatment selection, satisfaction, expectations, goals, and comfort discussing symptoms, as well as treatment challenges and skipped doses. The study results emphasize that patient/neurologist communication and patient input into the treatment decision-making process likely influence patient satisfaction with treatment.

          Most cited references20

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          The Global Adherence Project (GAP): a multicenter observational study on adherence to disease-modifying therapies in patients with relapsing-remitting multiple sclerosis.

          most disease-modifying therapies (DMTs) for multiple sclerosis (MS) are self-injectable medications that must be taken on an ongoing basis to reduce disease activity. Thus, adherence to therapy becomes an important challenge that must be addressed to maximize benefits of therapy. This study evaluated rates of adherence to prescribed treatment and explored factors affecting adherence amongst patients with relapsing-remitting MS. this was an observational, multicenter, multinational, phase 4 study. Patients and physicians received paper questionnaires regarding adherence to DMTs approved at the time of the study, including intramuscular interferon beta-1a (IFNβ-1a), subcutaneous IFNβ-1a, IFNβ-1b, and glatiramer acetate. Quality of life and cognition data also were collected. Multivariate analysis was conducted to identify factors associated with adherence to long-term DMTs. two thousand six hundred and forty-eight patients were studied, revealing an average treatment duration of 31 months. Seventy-five percent of patients (n = 1923) were adherent to therapy. The most common reasons for non-adherence were forgetting to administer the injection (50.2%) and other injection-related reasons (32.0%). Adherent patients reported better quality of life (P < 0.05) and fewer neuropsychological issues (P < 0.001) than non-adherent patients. Adherent patients had significantly shorter duration of disease (P < 0.001) and shorter duration of therapy (P = 0.005) than non-adherent patients. Women were more likely than men to adhere to treatment. identifying factors that affect adherence to prescribed treatments is the first step in improving adherence of patients with MS to therapy, thereby helping maximize the benefits of long-term DMTs.
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            How does satisfaction with the health-care system relate to patient experience?

            To explore what determines people's satisfaction with the health-care system above and beyond their experience as patients. Data on health system responsiveness, which refers to the manner and environment in which people are treated when they seek health care, provides a unique opportunity to better understand the determinants of people's satisfaction with the health-care system and how strongly this is influenced by an individual's experience as a patient. The data were obtained from 21 European Union countries in the World Health Survey for 2003. Additive ordinary least-squares regression models were used to assess the extent to which variables commonly associated with satisfaction with the health-care system, as recorded in the literature, explain the variation around the concept of satisfaction. A residual analysis was used to identify other predictors of satisfaction with the health-care system. Patient experience was significantly associated with satisfaction with the health-care system and explained 10.4% of the variation around the concept of satisfaction. Other factors such as patient expectations, health status, type of care, and immunization coverage were also significant predictors of health system satisfaction; although together they explained only 17.5% of the observed variation, while broader societal factors may largely account for the unexplained portion of satisfaction with the health-care system. Contrary to published reports, people's satisfaction with the health-care system depends more on factors external to the health system than on the experience of care as a patient. Thus, measuring the latter may be of limited use as a basis for quality improvement and health system reform.
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              Patient reported outcomes: looking beyond the label claim

              The use of patient reported outcome scales in clinical trials conducted by the pharmaceutical industry has become more widespread in recent years. The use of such outcomes is particularly common for products developed to treat chronic, disabling conditions where the intention is not to cure but to ameliorate symptoms, facilitate functioning or, ultimately, to improve quality of life. In such cases, patient reported evidence is increasingly viewed as an essential complement to traditional clinical evidence for establishing a product's competitive advantage in the marketplace. In a commercial setting, the value of patient reported outcomes is viewed largely in terms of their potential for securing a labelling claim in the USA or inclusion in the summary of product characteristics in Europe. Although, the publication of the recent US Food and Drug Administration guidance makes it difficult for companies to make claims in the USA beyond symptom improvements, the value of these outcomes goes beyond satisfying requirements for a label claim. The European regulatory authorities, payers both in the US and Europe, clinicians and patients all play a part in determining both the availability and the pricing of medicinal products and all have an interest in patient-reported data that go beyond just symptoms. The purpose of the current paper is to highlight the potential added value of patient reported outcome data currently collected and held by the industry for these groups.
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                Author and article information

                Journal
                Patient Prefer Adherence
                Patient Prefer Adherence
                Patient Preference and Adherence
                Patient preference and adherence
                Dove Medical Press
                1177-889X
                2017
                22 December 2016
                : 11
                : 33-45
                Affiliations
                [1 ]Multiple Sclerosis Centre of Catalonia, Hospital Vall d’Hebron, Barcelona, Spain
                [2 ]European Multiple Sclerosis Platform, Brussels, Belgium
                [3 ]National Multiple Sclerosis Society, Denver, CO, USA
                [4 ]Royal Victoria Infirmary, Newcastle-upon-Tyne, UK
                [5 ]Department of Neurology, University of Virginia, Charlottesville, VA, USA
                [6 ]Nancy Law Consulting LLC, Parker, CO, USA
                [7 ]Biogen, Cambridge, MA, USA
                [8 ]Centre of Excellence for Biomedical Research, University of Genoa, Genoa, Italy
                [9 ]Department of Neurology, University of Regensburg, Regensburg, Germany
                [10 ]Hope Neurology Multiple Sclerosis Center, Knoxville, TN, USA
                Author notes
                Correspondence: Mar Tintoré, Multiple Sclerosis Centre of Catalonia, Hospital Vall d’Hebron EUI 2ª Pl, Ps. Vall d’Hebron, 119-129, 08035 Barcelona, Spain, Tel +34 93 274 6202, Fax +34 93 274 6084, Email mtintore@ 123456cem-cat.org
                Article
                ppa-11-033
                10.2147/PPA.S115090
                5189708
                28053511
                c0190886-18d4-4597-912a-0616ee22b70d
                © 2017 Tintoré et al. This work is published and licensed by Dove Medical Press Limited

                The full terms of this license are available at https://www.dovepress.com/terms.php and incorporate the Creative Commons Attribution – Non Commercial (unported, v3.0) License ( http://creativecommons.org/licenses/by-nc/3.0/). By accessing the work you hereby accept the Terms. Non-commercial uses of the work are permitted without any further permission from Dove Medical Press Limited, provided the work is properly attributed.

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                Original Research

                Medicine
                health care provider survey,multiple sclerosis,patient-health care provider relationship,patient survey,treatment expectations,treatment satisfaction

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