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Multiple Sclerosis Health Quality

Sarah J Donkers, Katherine Chan, Stephan Milosavljevic, Maureen Pakosh, Kristin E Musselman
Initiatives to increase physical activity (PA) are most effective when combined with behavior change strategies (BCS). However, this is not routinely done and perhaps can be attributed to health care professionals' (HCP) lack of confidence and understanding of how to best apply BCS. This review aimed to identify and synthesize the existing literature describing methods used to train HCP to deliver BCS for PA promotion for individuals living with neurological conditions. This review followed the Preferred Reporting Items for Systematic Reviews and Meta-analyses (PRISMA) guidelines...
November 29, 2018: Translational Behavioral Medicine
Peter Rieckmann, Matthias Schwab, Dieter Pöhlau, Iris-Katharina Penner, Torsten Wagner, Elke Schel, Antonios Bayas
INTRODUCTION: Patient adherence is a key determinant of treatment success in multiple sclerosis (MS). The RebiSmart® autoinjector facilitates patient self-injection of subcutaneous interferon β-1a (sc IFN β-1a) and allows quantitative measurement of adherence via its automated dosing log. We evaluated patient adherence and patient-reported cognitive and health-economic outcomes over 2 years in patients using RebiSmart® . METHODS: In this non-interventional, single-arm study, enrolled patients were 12-65 years of age, had relapsing-remitting MS or a single demyelinating event, and had been prescribed 44 or 22 μg sc IFN β-1a...
November 28, 2018: Advances in Therapy
Joanna Dymecka, Mariola Bidzan
The aim of this research was to assess the level of adaptation to multiple sclerosis ( Sclerosis multiplex ; MS) and health-related quality of life (HRQoL) of the study population as well as to determine the relationship between biomedical factors related to the course of multiple sclerosis, adaptation to the disease, and HRQoL. Analysis of medical records, clinical and psychological interviews, the Extended Disability Status Scale (EDSS), Guy's Neurological Disability Scale (GNDS), the Acceptance of Illness Scale (AIS), and the Multiple Sclerosis Impact Scale 29 (MSIS-29) were collected from 137 patients with MS...
November 28, 2018: International Journal of Environmental Research and Public Health
Andrew Guidry, Kevin Crutchfield
Neurologic disease does not discriminate, even among athletes. Common neurologic diseases among athletes include multiple sclerosis, seizures, headaches, and sleep disorders. Although concrete guidelines for sport participation among athletes with neurologic diseases do not exist, evidence-based and consensus statements can aid healthcare providers in determining whether and to what extent such athletes should participate in sports. Moreover, sport participation is important, since multiple studies indicate that exercise improves disease-specific symptoms, manifestations, and overall quality of life...
2018: Handbook of Clinical Neurology
Mark Edwards
Functional (psychogenic) gait disorders are a common presentation of functional neurological disorder - one of the commonest diagnoses made in neurology practice. People with functional neurological disorder are as disabled and experience as poor a quality of life as patients with multiple sclerosis and Parkinson's disease. People with functional neurological disorder, including gait disorder, are often perceived as being challenging to diagnose and manage, and as a result attitudes of health professionals towards them are often negative...
2018: Handbook of Clinical Neurology
James D Chambers, Elle F Pope, Colby L Wilkinson, Peter J Neumann
BACKGROUND: FDA-required labeling summarizes certain data that the FDA relies on in its drug approval process. However, when determining coverage of specialty drugs, health care payers may consider dissimilar evidence. OBJECTIVE: To compare evidence cited by the largest U.S. commercial payers in their specialty drug coverage policies with evidence featured in the labeling of the indicated drugs. METHODS: We used the Tufts Medical Center Specialty Drug Evidence and Coverage Database (SPEC)-a database of specialty drug coverage policies issued by 17 of the 20 largest U...
December 2018: Journal of Managed Care & Specialty Pharmacy
Nathaniel Hendrix, Daniel A Ollendorf, Richard H Chapman, Anne Loos, Shanshan Liu, Varun Kumar, Jeffrey A Linder, Steven D Pearson, David L Veenstra
BACKGROUND: Newer classes of targeted drugs for moderate to severe plaque psoriasis are more effective and more expensive than older classes, posing a difficult and potentially costly decision about whether to use them as initial targeted treatments. OBJECTIVE: To estimate the clinical and economic outcomes of initial targeted treatment for the following drugs: adalimumab, etanercept, and infliximab (TNFα inhibitors); apremilast (PDE4 inhibitor); ustekinumab (IL-12/23 inhibitor); and ixekizumab, secukinumab, and brodalumab (IL-17 inhibitors)...
December 2018: Journal of Managed Care & Specialty Pharmacy
Lisa Nothnagel, Fabian Jung, Tanja Rossmanith, Manuela Thurn, Mukul Ashtikar, Gerd Geisslinger, Michael J Parnham, Matthias G Wacker
Since many drugs in the therapy scheme of multiple sclerosis (MS) are applied parenterally with significant side effects, oral treatment is the most accepted therapy option for chronic diseases like MS. The drug candidate TMP-001, which has disease-modifying properties, can be applied orally. Beside other symptoms, swallowing disorders have a major impact not only on the health status and quality of life of MS patients, but also impede reliable drug therapy. Consequently, the development of an easy-to-swallow liquid oral dosage form supported by a combined PBPK-IVIVC model was approached...
November 16, 2018: European Journal of Pharmaceutics and Biopharmaceutics
Teng I Leong, Tracey J Weiland, George A Jelinek, Steve Simpson, Chelsea R Brown, Sandra L Neate, Keryn L Taylor, Emily O'Kearney, Elasma Milanzi, Alysha M De Livera
Objective: To explore the association between combined lifestyle risk factors with quality of life in people with multiple sclerosis (MS) over 2.5 years. Methods: People with MS were recruited to participate in a comprehensive online survey regarding their demographic and clinical characteristics, health-related quality of life (HRQOL), and lifestyle behaviors including physical activity, alcohol consumption, cigarette smoking, body mass index, and dietary habits measured at baseline and 2.5-year follow-up...
2018: Frontiers in Neurology
Elizabeth Goodwin, Colin Green, Annie Hawton
OBJECTIVE: In economic evaluation, health outcomes are commonly quantified using quality-adjusted life-years (QALYs) derived from the preferences of a sample of the general population. It can be argued that this approach ignores the preferences of people with experience of the condition, and that patient preferences have a place in the valuation of health outcomes. Here we report the estimation of a preference-based index for an existing condition-specific preference-based measure for multiple sclerosis (MS), the MSIS-8D, based on the preferences of people with MS...
November 2018: Value in Health: the Journal of the International Society for Pharmacoeconomics and Outcomes Research
Keryn L Taylor, Steve Simpson, George A Jelinek, Sandra L Neate, Alysha M De Livera, Chelsea R Brown, Emily O'Kearney, Claudia H Marck, Tracey J Weiland
Background: Depression is common and has a significant impact on quality of life for many people with multiple sclerosis (MS). A preventive management approach via modification of lifestyle risk factors holds potential benefits. We examined the relationship between modifiable lifestyle factors and depression risk and the change in depression over 2.5 years. Methods: Sample recruited using online platforms. 2,224 (88.9%) at baseline and 1,309 (93.4%) at 2.5 years follow up completed the necessary survey data...
2018: Frontiers in Psychiatry
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
BACKGROUND: Time matters in multiple sclerosis (MS). Irreversible neural damage and cell loss occur from disease onset. The MS community has endorsed a management strategy of prompt diagnosis, timely intervention and regular proactive monitoring of treatment effectiveness and disease activity to improve outcomes in people with MS. OBJECTIVES: We sought to develop internationally applicable quality standards for timely, brain health-focused MS care. METHODS: A panel of MS specialist neurologists participated in an iterative, online, modified Delphi process to define 'core', 'achievable' and 'aspirational' time frames reflecting minimum, good and high care standards, respectively...
November 1, 2018: Multiple Sclerosis: Clinical and Laboratory Research
Doreen McClurg, Fiona Harris, Kirsteen Goodman, Selina Doran, Suzanne Hagen, Shaun Treweek, Christine Norton, Maureen Coggrave, John Norrie, Petra Rauchhaus, Peter Donnan, Anton Emmanuel, Sarkis Manoukian, Helen Mason
BACKGROUND: Between 50% and 80% of people with multiple sclerosis (PwMS) experience neurogenic bowel dysfunction (NBD) (i.e. constipation and faecal incontinence) that affects quality of life and can lead to hospitalisation. OBJECTIVES: To determine the clinical effectiveness and cost-effectiveness of abdominal massage plus advice on bowel symptoms on PwMS compared with advice only. A process evaluation investigated the factors that affected the clinical effectiveness and possible implementation of the different treatments...
October 2018: Health Technology Assessment: HTA
Julia Luise Magaard, Sarah Liebherz, Hanne Melchior, Alexander Engels, Hans-Helmut König, Levente Kriston, Holger Schulz, Jeanette Jahed, Anna Levke Brütt, Katrin Christiane Reber, Martin Härter
BACKGROUND: German statutory health insurances are pursuing the goal of improving treatment of chronically ill people by promoting networks of health care providers and supporting treatments that reflect the current medical knowledge. The so-called PNP program is a collaborative care program developed by a German statutory health insurance, which defines specific rules on psychiatric, neurological, psychosomatic, and psychotherapeutic treatment. It aims to strengthen provision of guideline-based outpatient treatment and collaboration between different health care providers...
October 25, 2018: BMC Psychiatry
Dalia L Rotstein, Marianna Cortese, Teresa T Fung, Tanuja Chitnis, Alberto Ascherio, Kassandra L Munger
OBJECTIVE: To determine the association between measures of overall diet quality (dietary indices/patterns) and risk of multiple sclerosis (MS). METHODS: Over 185,000 women in the Nurses' Health Study (NHS) and Nurses' Health Study II (NHSII) completed semiquantitative food frequency questionnaires every 4 years. There were 480 MS incident cases. Diet quality was assessed using the Alternative Healthy Eating Index-2010 (AHEI-2010), Alternate Mediterranean Diet (aMED) index, and Dietary Approaches to Stop Hypertension (DASH) index...
October 23, 2018: Multiple Sclerosis: Clinical and Laboratory Research
Lindsay O Neto, Elizabeth S Gromisch, Jessica Sloan, Tuula Tyry, Frederick W Foley
PURPOSE: Multiple sclerosis (MS) is a complex, chronic disease that can have debilitating effects on daily activities and well-being, compromising health-related quality of life. One underlying determinant of quality of life (QOL) is perceived illness intrusiveness, which examines the disruptiveness of the condition and/or its related treatment on engagement in interest and activities, in turn affecting psychological functioning. There is evidence that persons with MS (PwMS) have higher level of illness intrusiveness compared to those with other chronic conditions; however, limited research exists on differences by sex...
October 17, 2018: Quality of Life Research
Sascha Köpke, Alessandra Solari, Anne Rahn, Fary Khan, Christoph Heesen, Andrea Giordano
BACKGROUND: People with multiple sclerosis (MS) are confronted with a number of important uncertainties concerning many aspects of the disease. These include diagnosis, prognosis, disease course, disease-modifying therapies, symptomatic therapies, and non-pharmacological interventions, among others. While people with MS demand adequate information to be able to actively participate in medical decision making and to self manage their disease, it has been shown that patients' disease-related knowledge is poor, therefore guidelines recommend clear and concise high-quality information at all stages of the disease...
October 14, 2018: Cochrane Database of Systematic Reviews
Fernando Gracia, Mario Larreategui, Gaudencio Rodríguez, Aaron Benzadón, Michelle Ortiz, Divian Morales, Claudia Domínguez, Rosa Enith Carrillo, Carlos Valderrama, Luís Lizán, Blas Armién
The purpose of this work is to estimate the costs associated with managing patients with MS in Panama and evaluating the impact of the disease on their health-related quality of life (HRQoL). Multicentric observational, retrospective, cross-sectional study. The costs were estimated from societal and patient perspectives and expressed in USD, 2015. The focus of the study is based on prevalence and on a "bottom-up" approach. To estimate the total cost per patient, annual reported use for each resource was multiplied by its unit cost...
2018: PloS One
Anne M Rentz, Anne M Skalicky, Zhimei Liu, David W Dunn, Michael D Frost, Jo Anne Nakagawa, Judith Prestifilippo, Qayyim Said, James W Wheless
Background: Tuberous sclerosis complex (TSC) is a rare genetic disorder characterized by benign tumors in multiple organs, including non-cancerous kidney lesions known as renal angiomyolipomas. This study's objective is to describe the age-stratified morbidity, treatment patterns, and health-related quality of life of TSC patients with renal angiomyolipomas in the United States. A cross-sectional, anonymous web-based survey was conducted with a convenience sample of TSC patients and caregivers identified through a patient advocacy organization...
December 2018: Journal of patient-reported outcomes
Elaine H Coulter, Sarah Bond, Ulrik Dalgas, Lorna Paul
BACKGROUND: Remaining physically active is important to maintain functional ability and reduce the incidence of co-morbidities in people with Multiple Sclerosis. The aim of this review was to evaluate the effectiveness of interventions on physical activity or sedentary behaviour in people with Multiple Sclerosis. METHODS: A systematic search was conducted in May 2018 of the following databases: Web of Science Core Collections, Embase and Medline. Included studies were randomised controlled trials involving people with Multiple Sclerosis who completed an intervention, compared to any comparator...
October 5, 2018: Disability and Rehabilitation
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