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Multiple Sclerosis Health Quality

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https://www.readbyqxmd.com/read/30317542/information-provision-for-people-with-multiple-sclerosis
#1
REVIEW
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
https://www.readbyqxmd.com/read/30304006/costs-of-multiple-sclerosis-in-panama-from-societal-patient-perspectives-and-health-related-quality-of-life
#2
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
https://www.readbyqxmd.com/read/30294710/burden-of-renal-angiomyolipomas-associated-with-tuberous-sclerosis-complex-results-of-a-patient-and-caregiver-survey
#3
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
https://www.readbyqxmd.com/read/30290702/the-effectiveness-of-interventions-targeting-physical-activity-and-or-sedentary-behaviour-in-people-with-multiple-sclerosis-a-systematic-review
#4
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
https://www.readbyqxmd.com/read/30277865/the-association-of-sociodemographic-and-disease-variables-with-hand-function-a-scleroderma-patient-centered-intervention-network-cohort-study
#5
Linda Kwakkenbos, Tatiana A Sanchez, Kimberly A Turner, Luc Mouthon, Marie-Eve Carrier, Marie Hudson, Cornelia H M van den Ende, Anne A Schouffoer, Joep J K C Welling, Maureen Sauvé, Brett D Thombs
OBJECTIVES: Impaired hand function in systemic sclerosis (SSc) is a primary cause of disability and contributes diminished health-related quality of life. The objective of the present study was to evaluate sociodemographic, lifestyle, and disease-related factors independently associated with hand function in SSc. METHODS: Patients enrolled in the Scleroderma Patient-centered Intervention Network Cohort who completed baseline study questionnaires between March 2014 and September 2017 were included...
July 2018: Clinical and Experimental Rheumatology
https://www.readbyqxmd.com/read/30255488/health-related-quality-of-life-in-clinically-isolated-syndrome-and-risk-of-conversion-to-multiple-sclerosis
#6
Elisa Baldin, Trond Riise, Katia Mattarozzi, Alberto Gajofatto, Franco Granella, Maurizio Leone, Alessandra Lugaresi, Susanna Malagù, Luisa Motti, Walter Neri, Ilaria Pesci, Mario Santangelo, Cinzia Scandellari, Maria Rosaria Tola, Luca Vignatelli, Corrado Zenesini, Roberto D'Alessandro
BACKGROUND AND OBJECTIVES: A few studies have found that low scores on self-rated health and quality of life measures are associated with following worsening disability in multiple sclerosis (MS). We wanted to estimate the association between self-rated quality of life scores among patients with clinically isolated syndrome (CIS) and the risk of subsequent conversion to definite MS. METHODS: One hundred sixty-two patients from the GERONIMUS cohort with a symptom or sign suggestive of MS and without a definite diagnosis of MS at the time of inclusion were asked to evaluate their health-related quality of life according to MSQoL-54 scale...
September 25, 2018: Neurological Sciences
https://www.readbyqxmd.com/read/30251618/differentiation-of-health-related-quality-of-life-outcomes-between-five-disease-areas-results-from-an-international-survey-of-patients
#7
Olina Efthymiadou, Jean Mossman, Panos Kanavos
OBJECTIVES: Health-related quality of life (HRQoL) data generated by generic, preference-based instruments (i.e., EQ-5D) are highly demanded in health policy decision making, because they allow for direct comparisons of HRQoL outcomes between disease areas. We aimed to quantify HRQoL outcomes in breast cancer (BC), rheumatoid arthritis (RA), multiple sclerosis (MS), rare cancers (RC), and rare disease (RD) patients and understand the patterns that differentiate HRQoL outcomes between these disease areas, and more specifically between rare and more common disease population groups...
September 25, 2018: International Journal of Technology Assessment in Health Care
https://www.readbyqxmd.com/read/30249932/improving-the-job-retention-strategies-in-multiple-sclerosis-workers-the-role-of-occupational-physicians
#8
Benedetta Persechino, Luca Fontana, Giuliana Buresti, Grazia Fortuna, Antonio Valenti, Sergio Iavicoli
Several studies evaluated whether a person with multiple sclerosis is employed or not and investigated the main symptoms that hinder the job performance. However, despite occupational physicians are fundamental in managing disabled subjects, there is a serious lack of data regarding their role in improving employability of these workers. In this regard, we assessed occupational physicians' professional activity and training/updating needs in order to identify and develop management tools, operative procedures and training programs helpful to support and implement adequate job-retention strategies...
September 21, 2018: Industrial Health
https://www.readbyqxmd.com/read/30246874/vitamin-d-for-the-management-of-multiple-sclerosis
#9
REVIEW
Vanitha A Jagannath, Graziella Filippini, Carlo Di Pietrantonj, G V Asokan, Edward W Robak, Liz Whamond, Sarah A Robinson
BACKGROUND: This review is an update of a previously published review, "Vitamin D for the management of multiple sclerosis" (published in the Cochrane Library; 2010, Issue 12). Multiple sclerosis (MS) is characterised by inflammation, demyelination, axonal or neuronal loss, and astrocytic gliosis in the central nervous system (CNS), which can result in varying levels of disability. Some studies have provided evidence showing an association of MS with low levels of vitamin D and benefit derived from its supplementation...
September 24, 2018: Cochrane Database of Systematic Reviews
https://www.readbyqxmd.com/read/30235965/a-review-of-the-effects-of-baclofen-and-of-thc-cbd-oromucosal-spray-on-spasticity-related-walking-impairment-in-multiple-sclerosis
#10
Rafael Arroyo González
Multiple sclerosis (MS) is a complex disease with a heterogeneous and unpredictable clinical course. Mobility impairment after progressive paralyses and muscle tone spasticity is common. Areas covered: The prevalence, assessment, and pharmacological management of gait impairment and spasticity in MS and their effects on health-related quality of life (HRQoL) are discussed. The roles of oral and intrathecal baclofen and of delta-9-tetrahydrocannabinol/cannabidiol (THC:CBD) oromucosal spray in treating MS spasticity-related gait impairment are reviewed...
September 20, 2018: Expert Review of Neurotherapeutics
https://www.readbyqxmd.com/read/30234464/trait-mindfulness-and-wellness-in-multiple-sclerosis
#11
Ola Mioduszewski, Heather MacLean, Patricia A Poulin, Andra M Smith, Lisa A S Walker
Multiple sclerosis (MS) is a chronic, progressive, autoimmune, neurodegenerative disorder that can interfere with physical and psychological functioning, negatively affecting health-related quality of life (HRQoL). Fostering mindfulness may mitigate the negative consequences of MS on HRQoL. The relationship between mindfulness, mood and MS-related quality of life was investigated. In total, 52 individuals with MS completed questionnaires to examine the relationship between trait mindfulness and wellness. Higher levels of trait mindfulness were associated with better HRQoL, lower depression and anxiety, lower fatigue impact and fewer perceived cognitive deficits...
September 2018: Canadian Journal of Neurological Sciences. le Journal Canadien des Sciences Neurologiques
https://www.readbyqxmd.com/read/30196052/peripheral-quantitative-computed-tomography-review-of-evidence-and-recommendations-for-image-acquisition-analysis-and-reporting-among-individuals-with-neurological-impairment
#12
REVIEW
T Cervinka, L Giangregorio, H Sievanen, A M Cheung, B C Craven
In 2015, the International Society for Clinical Densitometry (ISCD) position statement regarding peripheral quantitative computed tomography (pQCT) did not recommend routine use of pQCT, in clinical settings until consistency in image acquisition and analysis protocols are reached, normative studies conducted, and treatment thresholds identified. To date, the lack of consensus-derived recommendations regarding pQCT implementation remains a barrier to implementation of pQCT technology. Thus, based on description of available evidence and literature synthesis, this review recommends the most appropriate pQCT acquisition and analysis protocols for clinical care and research purposes, and recommends specific measures for diagnosis of osteoporosis, assigning fracture risk, and monitoring osteoporosis treatment effectiveness, among patients with neurological impairment...
July 29, 2018: Journal of Clinical Densitometry
https://www.readbyqxmd.com/read/30160208/pediatric-onset-multiple-sclerosis-is-associated-with-reduced-parental-health-related-quality-of-life-and-family-functioning
#13
Julia O'Mahony, Ruth Ann Marrie, Audrey Laporte, Amit Bar-Or, E Ann Yeh, Adalsteinn Brown, Marie-Emmanuelle Dilenge, Brenda Banwell
BACKGROUND: Diagnosis of multiple sclerosis (MS) during childhood has the potential to impact the affected child's self-perception and the health-related quality of life (HRQoL) of the family. OBJECTIVE: To evaluate the impact of chronic disease, in children ascertained as having MS and their families, when compared to those with monophasic acquired demyelinating syndrome (monoADS). METHODS: In a national prospective cohort study of pediatric acquired demyelinating syndromes (ADS), the HRQoL of children and their families was captured using the Pediatric Quality of Life Inventory (PedsQL™ ) Modules...
August 30, 2018: Multiple Sclerosis: Clinical and Laboratory Research
https://www.readbyqxmd.com/read/30159340/the-impact-of-purinergic-system-enzymes-on-noncommunicable-neurological-and-degenerative-diseases
#14
REVIEW
Margarete Dulce Bagatini, Alessandra Antunes Dos Santos, Andréia Machado Cardoso, Aline Mânica, Cristina Ruedell Reschke, Fabiano Barbosa Carvalho
Evidences show that purinergic signaling is involved in processes associated with health and disease, including noncommunicable, neurological, and degenerative diseases. These diseases strike from children to elderly and are generally characterized by progressive deterioration of cells, eventually leading to tissue or organ degeneration. These pathological conditions can be associated with disturbance in the signaling mediated by nucleotides and nucleosides of adenine, in expression or activity of extracellular ectonucleotidases and in activation of P2X and P2Y receptors...
2018: Journal of Immunology Research
https://www.readbyqxmd.com/read/30146928/the-impact-of-fibromyalgia-syndrome-and-the-role-of-comorbidity-with-mood-and-post-traumatic-stress-disorder-in-worsening-the-quality-of-life
#15
Mauro Giovanni Carta, Maria Francesca Moro, Francesca Laura Pinna, Giorgia Testa, Enrico Cacace, Valeria Ruggiero, Martina Piras, Ferdinando Romano, Luigi Minerba, Sergio Machado, Rafael Christophe Freire, Antonio Egidio Nardi, Federica Sancassiani
BACKGROUND: The aim is to measure the association between fibromyalgia syndrome (FMS) and post-traumatic stress disorder (PTSD), mood and anxiety disorders using reliable psychiatric diagnoses according to Diagnostic and Statistical Manual of Mental Disorders (4th ed.; DSM-IV) and with a case-control design. METHODS: Case-control study with cases (71 consecutive female patients with FMS) and controls (284 subjects without FMS), randomly drawn after a gender- and age-matching technique from the database of an epidemiological survey...
August 27, 2018: International Journal of Social Psychiatry
https://www.readbyqxmd.com/read/30143019/sleep-quality-daytime-sleepiness-fatigue-and-quality-of-life-in-patients-with-multiple-sclerosis-treated-with-interferon-beta-1b-results-from-a-prospective-observational-cohort-study
#16
Sylvia Kotterba, Thomas Neusser, Christiane Norenberg, Patrick Bussfeld, Thomas Glaser, Martin Dörner, Markus Schürks
BACKGROUND: Sleep disorders and fatigue are common in multiple sclerosis (MS). The underlying causes are not fully understood, and prospective studies are lacking. Therefore, we conducted a prospective, observational cohort study investigating sleep quality, fatigue, quality of life, and comorbidities in patients with MS. METHODS: Patients with relapsing-remitting MS or clinically isolated syndrome treated with interferon beta-1b were followed over two years. The primary objective was to investigate correlations between sleep quality (PSQI), fatigue (MFIS), and functional health status (SF-36)...
August 24, 2018: BMC Neurology
https://www.readbyqxmd.com/read/30141001/disease-modifying-therapies-for-relapsing-remitting-and-primary-progressive-multiple-sclerosis-a-cost-utility-analysis
#17
Marita Zimmermann, Elizabeth Brouwer, Jeffrey A Tice, Matt Seidner, Anne M Loos, Shanshan Liu, Richard H Chapman, Varun Kumar, Josh J Carlson
BACKGROUND: Several disease-modifying therapies (DMTs) treat relapsing-remitting multiple sclerosis (RRMS) and primary progressive multiple sclerosis (PPMS). Few comprehensive cost-effectiveness analyses exist in this area, particularly from a payer perspective, despite rapidly increasing prices of DMTs. OBJECTIVE: We aimed to systematically compare cost effectiveness of all relevant DMTs for first-line treatment of RRMS, second-line treatment of RRMS, and first-line treatment of PPMS...
August 23, 2018: CNS Drugs
https://www.readbyqxmd.com/read/30105527/cladribine-tablets-a-review-in-relapsing-ms
#18
Emma D Deeks
Cladribine is a deoxyadenosine analogue prodrug that preferentially depletes lymphocytes, key cells underlying multiple sclerosis (MS) pathogenesis. Cladribine tablets (Mavenclad® ) represent the first short-course oral disease-modifying drug (DMD) for use in MS. The tablets, administered in two short courses 1 year apart, are indicated for the treatment of adults with highly active relapsing MS on the basis of data from pivotal clinical trials, including the phase 3 study CLARITY and its extension. A cumulative cladribine tablets dose of 3...
August 2018: CNS Drugs
https://www.readbyqxmd.com/read/30096684/factors-associated-with-perceived-need-for-mental-health-care-in-multiple-sclerosis
#19
Justine Orr, Charles N Bernstein, Lesley A Graff, Scott B Patten, James M Bolton, Jitender Sareen, James J Marriott, John D Fisk, Ruth Ann Marrie
BACKGROUND: Within the multiple sclerosis (MS) population, depression and anxiety are highly prevalent comorbidities that are associated with adverse outcomes such as diminished quality of life and disability progression. In the general population, many people who do not meet formal diagnostic criteria for depression or anxiety disorders still identify a need for mental health care. Limited data are available regarding the perceived need for mental health care among persons with MS. OBJECTIVE: We aimed to determine factors associated with a perceived need for mental health care in the MS population...
July 29, 2018: Multiple Sclerosis and related Disorders
https://www.readbyqxmd.com/read/30090640/costs-and-quality-of-life-by-disability-among-people-with-multiple-sclerosis-a-register-based-study-in-sweden
#20
Hanna Gyllensten, Andrius Kavaliunas, Kristina Alexanderson, Jan Hillert, Petter Tinghög, Emilie Friberg
Background: Population-based estimates of costs of illness and health-related quality of life, by disability levels among people with multiple sclerosis, are lacking. Objectives: To estimate the annual costs of illness and health-related quality of life, by disability levels, among multiple sclerosis patients, 21-64 years of age. Methods: Microdata from Swedish nationwide registers were linked to estimate the prevalence-based costs of illness in 2013, including direct costs (prescription drug use and specialised healthcare) and indirect costs (calculated using sick leave and disability pension), and health-related quality of life (estimated from the EQ-5D)...
July 2018: Multiple Sclerosis Journal—Experimental, Translational and Clinical
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