Views on disclosing mistreatment: A focus group study of differences between people with MS and their caregivers.

Abstract:

UNLABELLED:Both female and male persons with MS are at increased risk for various forms of physical, sexual, and disability-specific abuse. An ongoing study revealed a subset of respondents in which the caregiver acknowledged mistreatment of the person with MS, but that person either denied or minimized mistreatment METHODS:In an effort to understand this phenomenon, we conducted 4 focus groups of male caregivers, female caregivers, male persons with MS, and female persons with MS (total n=15). Data were analyzed using qualitative methodology RESULTS:Results included the surprising finding that, despite participants having been identified as recipients or perpetrators of mistreatment, all denied any form of abuse in the focus group setting. We concluded that attitudes toward mistreatment in these discrepant couples varied based on gender. Specifically, male caregivers may disclose abuse as a cry for help, whereas female caregivers may feel such behavior is justified because of the perceived "provocations" of the person with MS. Women with MS appeared reluctant to acknowledge abuse because they feared loss of their primary relationship; while men with MS calculated that putting up with a certain amount of mistreatment was worthwhile CONCLUSION:More attention should be paid in identifying and understanding this subset of persons with MS and their informal caregivers.

authors

Shapiro J,Wiglesworth A,Morrison EH

doi

10.1016/j.msard.2012.09.006

subject

Has Abstract

pub_date

2013-04-01 00:00:00

pages

96-102

issue

2

eissn

2211-0348

issn

2211-0356

pii

S2211-0348(12)00122-8

journal_volume

2

pub_type

杂志文章
  • Placebo controlled trials in neuromyelitis optica are needed and ethical.

    abstract::Currently, there are no approved treatments for NMO. All therapeutic studies in NMO have been either small, retrospective case series or uncontrolled prospective studies. Such studies are susceptible to inherent biases. As a consequence, conclusions regarding efficacy and safety from these studies may be erroneous. Th...

    journal_title:Multiple sclerosis and related disorders

    pub_type: 杂志文章,评审

    doi:10.1016/j.msard.2015.07.017

    authors: Cree BA

    更新日期:2015-11-01 00:00:00

  • Effects of functional electrical stimulation on gait in people with multiple sclerosis - A systematic review.

    abstract:BACKGROUND:Functional electrical stimulation (FES) is commonly used to ameliorate gait deficits in patients with multiple sclerosis (PwMS). This review critically evaluates the literature describing the orthotic and therapeutic effects of FES on gait in PwMS. METHODS:The PubMed, CINAHL, and ProQuest databases were sea...

    journal_title:Multiple sclerosis and related disorders

    pub_type: 杂志文章,评审

    doi:10.1016/j.msard.2017.01.010

    authors: Springer S,Khamis S

    更新日期:2017-04-01 00:00:00

  • Levels of peripheral Th17 cells and serum Th17-related cytokines in patients with multiple sclerosis: A meta-analysis.

    abstract:BACKGROUND:Multiple reports have described the proportion of Th17 cells in peripheral blood and serum levels of Th17-related cytokines in patients with multiple sclerosis (MS). To clarify the status of Th17 cells and Th17-related cytokines in MS patients, we did a meta-analysis of the results published previously to as...

    journal_title:Multiple sclerosis and related disorders

    pub_type: 杂志文章,meta分析,评审

    doi:10.1016/j.msard.2017.09.003

    authors: Li YF,Zhang SX,Ma XW,Xue YL,Gao C,Li XY

    更新日期:2017-11-01 00:00:00

  • Aphasic status epilepticus preceding tumefactive left hemisphere lesion in anti-MOG antibody associated disease.

    abstract:INTRODUCTION:Anti-myelin oligodendrocyte glycoprotein (MOG) antibodies have recently been associated with epilepsy with FLAIR hyperintense cortical lesions on MRI. Association between anti-MOG antibodies and epilepsy without detectable structural brain lesion on MRI is unknown. CASE REPORT:A 48-year-old right-handed m...

    journal_title:Multiple sclerosis and related disorders

    pub_type: 杂志文章

    doi:10.1016/j.msard.2018.10.012

    authors: Katsuse K,Kurihara M,Sugiyama Y,Kodama S,Takahashi M,Momose T,Yumoto M,Kaneko K,Takahashi T,Kubota A,Hayashi T,Toda T

    更新日期:2019-01-01 00:00:00

  • Impaired recognition of emotional facial expressions in patients with multiple sclerosis.

    abstract:BACKGROUND:Disturbances that occur in patients with multiple sclerosis (MS) are not restricted to motor, sensory, or urinary functions; they also include cognitive dysfunction, fatigue, and depression. Moreover, people with MS are known to have fewer social activities and a reduced quality of life. One aspect of social...

    journal_title:Multiple sclerosis and related disorders

    pub_type: 杂志文章

    doi:10.1016/j.msard.2014.02.001

    authors: Berneiser J,Wendt J,Grothe M,Kessler C,Hamm AO,Dressel A

    更新日期:2014-07-01 00:00:00

  • Burden of multiple sclerosis on direct, indirect costs and quality of life: National US estimates.

    abstract:BACKGROUND:MS imposes a significant burden on patients, caregivers, employers, and the healthcare system. OBJECTIVE:To comprehensively evaluate the US MS burden using nationally representative data from the Medical Expenditure Panel Survey. METHODS:We identified non-institutionalized patients aged ≥18 with MS (ICD-9 ...

    journal_title:Multiple sclerosis and related disorders

    pub_type: 杂志文章

    doi:10.1016/j.msard.2013.09.004

    authors: Campbell JD,Ghushchyan V,Brett McQueen R,Cahoon-Metzger S,Livingston T,Vollmer T,Corboy J,Miravalle A,Schreiner T,Porter V,Nair K

    更新日期:2014-03-01 00:00:00

  • 2017 McDonald criteria for multiple sclerosis: Earlier diagnosis with reduced specificity?

    abstract:BACKGROUND:McDonald criteria for multiple sclerosis (MS) diagnosis were revised in 2017. OBJECTIVE:Aim of our study was to evaluate and compare the sensitivity and specificity of 2017 and 2010 McDonald criteria in patients presenting with an initial demyelinating event (IDE). METHODS:We retrospectively identified pat...

    journal_title:Multiple sclerosis and related disorders

    pub_type: 杂志文章

    doi:10.1016/j.msard.2019.01.008

    authors: Gobbin F,Zanoni M,Marangi A,Orlandi R,Crestani L,Benedetti MD,Gajofatto A

    更新日期:2019-04-01 00:00:00

  • Low-fat, plant-based diet in multiple sclerosis: A randomized controlled trial.

    abstract:BACKGROUND:The role that dietary interventions can play in multiple sclerosis (MS) management is of huge interest amongst patients and researchers but data evaluating this is limited. Possible effects of a very-low-fat, plant-based dietary intervention on MS related progression and disease activity as measured by brain...

    journal_title:Multiple sclerosis and related disorders

    pub_type: 杂志文章,随机对照试验

    doi:10.1016/j.msard.2016.07.001

    authors: Yadav V,Marracci G,Kim E,Spain R,Cameron M,Overs S,Riddehough A,Li DK,McDougall J,Lovera J,Murchison C,Bourdette D

    更新日期:2016-09-01 00:00:00

  • Relative importance of vision and proprioception in maintaining standing balance in people with multiple sclerosis.

    abstract:BACKGROUND:Balance impairment is common and a risk factor of falls in people with multiple sclerosis (MS). The purpose of this study was to evaluate the relative importance between vision and proprioception in maintaining standing body balance among individuals with MS compared with healthy individuals. METHODS:Thirty...

    journal_title:Multiple sclerosis and related disorders

    pub_type: 杂志文章

    doi:10.1016/j.msard.2019.101901

    authors: Yang F,Liu X

    更新日期:2019-12-20 00:00:00

  • Neurosarcoidosis as an MS Mimic: The trials and tribulations of making a diagnosis.

    abstract::The clinical presentation of neurosarcoidosis is varied as multiple levels of the neuraxis may be affected. When central nervous system involvement occurs, making an accurate diagnosis of the condition can be challenging, especially given the current definition for definite neurosarcoidosis requires histologic confirm...

    journal_title:Multiple sclerosis and related disorders

    pub_type: 杂志文章,评审

    doi:10.1016/j.msard.2015.06.012

    authors: MacLean HJ,Abdoli M

    更新日期:2015-09-01 00:00:00

  • Flaccid paralysis in neuromyelitis optica: An atypical presentation with possible involvement of the peripheral nervous system.

    abstract:BACKGROUND:Neuromyelitis optica spectrum disorders (NMOSD) typically lead to spastic paraparesis and spare the peripheral nervous system (PNS). CASE REPORT:Here, we describe an anti-aquaporin-4-seropositive NMOSD patient suffering from acute transverse myelitis with painful, flaccid paralysis and incontinence of urine...

    journal_title:Multiple sclerosis and related disorders

    pub_type: 杂志文章

    doi:10.1016/j.msard.2018.07.032

    authors: Grüter T,Ayzenberg I,Gahlen A,Kneiphof J,Gold R,Kleiter I

    更新日期:2018-10-01 00:00:00

  • Unmet needs of multiple sclerosis patients in the community.

    abstract:BACKGROUND:There is no evidence that disease modifying therapies (DMTs) are beneficial in progressive (non-relapsing) MS. However, these patients may benefit from multidiscipliniary interventions, and require financial and community support. Non-pharmacological needs of MS patients may be overlooked during fund allocat...

    journal_title:Multiple sclerosis and related disorders

    pub_type: 杂志文章,多中心研究

    doi:10.1016/j.msard.2015.01.003

    authors: Lonergan R,Kinsella K,Fitzpatrick P,Duggan M,Jordan S,Bradley D,Hutchinson M,Tubridy N

    更新日期:2015-03-01 00:00:00

  • Cross-sectional survey of complementary and alternative medicine used in Oregon and Southwest Washington to treat multiple sclerosis: A 17-Year update.

    abstract:BACKGROUND:In 2001, we conducted a survey on use of complementary and alternative medicine (CAM) in people with multiple sclerosis (pwMS) in Oregon and Southwest Washington to treat their disease. OBJECTIVES, METHODS:In 2018, we administered a revised survey in the same region to describe updated patterns of CAM use i...

    journal_title:Multiple sclerosis and related disorders

    pub_type: 杂志文章

    doi:10.1016/j.msard.2020.102041

    authors: Silbermann E,Senders A,Wooliscroft L,Rice J,Cameron M,Waslo C,Orban A,Chase E,Yadav V,Bourdette D,Spain RI

    更新日期:2020-06-01 00:00:00

  • Olfactory identification associates with cognitive function and the third ventricle width in patients with relapsing-remitting multiple sclerosis.

    abstract:BACKGROUND:Olfactory dysfunction is a known clinical feature of multiple sclerosis (MS). Some studies have shown that odor identification impairment is an essential feature associated with cognitive function in MS. This study investigates the relationship between olfactory identification and the disease state, includin...

    journal_title:Multiple sclerosis and related disorders

    pub_type: 杂志文章

    doi:10.1016/j.msard.2019.101507

    authors: Okada K,Kakeda S,Tahara M

    更新日期:2020-02-01 00:00:00

  • Real-world incidence of fingolimod-associated macular oedema.

    abstract:BACKGROUND:Fingolimod (Gilenya, Novartis, Basel Switzerland) 0.5 mg orally once-daily is widely used for relapsing-remitting multiple sclerosis. Patients are usually screened four months after starting fingolimod for fingolimod-associated macular oedema (FAME). Large registration trials with stringent eligibility crite...

    journal_title:Multiple sclerosis and related disorders

    pub_type: 杂志文章

    doi:10.1016/j.msard.2020.102125

    authors: Goh LY,Kirthi V,Silber E,Harvey JP,Jackson TL

    更新日期:2020-07-01 00:00:00

  • Evaluation of types of psychological disorders in patients with neuromyelitis optica spectrum disorder (NMOSD).

    abstract:BACKGROUND:Neuromyelitis Optica Spectrum Disorder (NMOSD), commonly characterized by affecting optic nerves and spinal cord can be regarded as one of uncommon diseases of the central nervous system. Although the evidence presented in the literature supports cognitive impairments, psychological aspects of the disease an...

    journal_title:Multiple sclerosis and related disorders

    pub_type: 杂志文章

    doi:10.1016/j.msard.2020.102128

    authors: Ebadi Z,Saeedi R,Hashemi SN,Gheini MR,Sahraian MA,Naser Moghadasi A

    更新日期:2020-07-01 00:00:00

  • Differential diagnosis of multiple sclerosis and other inflammatory CNS diseases.

    abstract::Multiple sclerosis (MS) is the most common acquired demyelinating disorder of the central nervous system (CNS). Diagnosing MS can be very challenging owing to its variable clinical features and lack of specific tests. Magnetic resonance imaging (MRI) is a key measure in this process. Although white matter lesions on b...

    journal_title:Multiple sclerosis and related disorders

    pub_type: 杂志文章,评审

    doi:10.1016/j.msard.2019.101452

    authors: Wildner P,Stasiołek M,Matysiak M

    更新日期:2020-01-01 00:00:00

  • Anti-MOG associated disorder-Clinical and radiological characteristics compared to AQP4-IgG+ NMOSD-A single-center experience.

    abstract:BACKGROUND:The discovery of two immunoglobulin G (IgG) antibodies against aquaporin 4 (anti-AQP4) and myelin oligodendrocyte glycoprotein (anti-MOG) has led to the distinction of the disorders anti-AQP4 immunoglobulin G positive neuromyelitis spectrum disorder (AQP4-IgG+ NMOSD) and anti-MOG associated disorder (MOGAD)....

    journal_title:Multiple sclerosis and related disorders

    pub_type: 杂志文章

    doi:10.1016/j.msard.2020.102718

    authors: Rempe T,Tarhan B,Rodriguez E,Viswanathan VT,Gyang TV,Carlson A,Tuna IS,Rees J

    更新日期:2020-12-24 00:00:00

  • Integration of the Extreme Gradient Boosting model with electronic health records to enable the early diagnosis of multiple sclerosis.

    abstract:BACKGROUND:Delayed multiple sclerosis (MS) diagnoses are not uncommon, an early diagnostic tool is urgently warranted. We aimed to develop an effective tool through electronic health records and machine learning techniques to early recognize MS patients from hospital visitors in China. METHODS:Two case sets were colle...

    journal_title:Multiple sclerosis and related disorders

    pub_type: 杂志文章

    doi:10.1016/j.msard.2020.102632

    authors: Wang R,Luo W,Liu Z,Liu W,Liu C,Liu X,Zhu H,Li R,Song J,Hu X,Han S,Qiu W

    更新日期:2020-11-18 00:00:00

  • Does natalizumab treatment increase the risk of herpes simplex encephalitis in multiple sclerosis? Case and discussion.

    abstract::This report presents the 4th documented case worldwide of herpes simplex encephalitis in multiple sclerosis (MS) patients treated with natalizumab and the first case in the UK. Natalizumab is licensed for relapsing remitting multiple sclerosis in patients with high disease activity despite treatment with interferon-be...

    journal_title:Multiple sclerosis and related disorders

    pub_type: 杂志文章

    doi:10.1016/j.msard.2013.02.006

    authors: Sharma K,Ballham SA,Inglis KE,Renowden S,Cottrell DA

    更新日期:2013-10-01 00:00:00

  • Tonsillectomy in multiple sclerosis patients: Retrospective, case-controlled, exploratory study.

    abstract:BACKGROUND:Previous studies have shown an effect of tonsillectomy and greater risk for future autoimmune diseases. Currently there are only few outdated analyses of tonsillectomy and multiple sclerosis (MS) risk. OBJECTIVE:To investigate the prevalence of tonsillectomy in MS patients and healthy controls (HCs). METHO...

    journal_title:Multiple sclerosis and related disorders

    pub_type: 杂志文章

    doi:10.1016/j.msard.2020.102131

    authors: Jakimovski D,Ahmed MK,Vaughn CB,Zivadinov R,Weinstock-Guttman B

    更新日期:2020-07-01 00:00:00

  • Parinaud's syndrome - A rare presentation of clinically isolated syndrome.

    abstract::We present a 26 year old Pakistani lady with first presentation of a demyelinating event, presenting as Parinaud's syndrome. The video demonstrates a convergence-retraction nystagmus on upgaze and failure of accommodation, and her brain imaging confirms a corresponding pre-tectal contrast enhancing T2 hyperintense les...

    journal_title:Multiple sclerosis and related disorders

    pub_type: 杂志文章

    doi:10.1016/j.msard.2013.09.003

    authors: Gnanapavan S,Sillery E,Acheson JF,Toosy AT

    更新日期:2014-05-01 00:00:00

  • Linking Cognitive Impairment to Neuroinflammation in Multiple Sclerosis using neuroimaging tools.

    abstract::Multiple sclerosis (MS) is a complex chronic immune disease in the central nervous system, causing neurological disability among young and middle-aged adults. Impaired cognition is now emerging as a major clinical symptom being present in more than 50% of MS patients. Recent data support that neuroinflammation mediate...

    journal_title:Multiple sclerosis and related disorders

    pub_type: 杂志文章,评审

    doi:10.1016/j.msard.2020.102622

    authors: Barros C,Fernandes A

    更新日期:2020-11-14 00:00:00

  • End of dose interval symptoms in patients treated with natalizumab: A role for serum cytokines?

    abstract:BACKGROUND:Many natalizumab treated patients experience end of dose interval (EDI) symptoms towards the end of the administration cycle. Natalizumab has previously shown to influence cytokine profiles in relapsing remitting MS patients. We hypothesize that EDI symptoms might be explained by variability in serum cytokin...

    journal_title:Multiple sclerosis and related disorders

    pub_type: 杂志文章

    doi:10.1016/j.msard.2020.102020

    authors: Cathérine D,Annelien P,Anne S,Luc A,Liesbeth VH,Gerlo S,Guy L

    更新日期:2020-06-01 00:00:00

  • Peripapillary retinal nerve fiber layer thickness measured by optical coherence tomography in different clinical subtypes of multiple sclerosis.

    abstract:BACKGROUND:Multiple sclerosis (MS) is a chronic inflammatory demyelinating autoimmune disease of the central nervous system (CNS) with axonal degeneration as major determinant of neurological disability. Assessment of unmyelinated retinal nerve fibers using optical coherence tomography (OCT) may be useful for diagnosin...

    journal_title:Multiple sclerosis and related disorders

    pub_type: 杂志文章

    doi:10.1016/j.msard.2018.11.003

    authors: Jankowska-Lech I,Wasyluk J,Palasik W,Terelak-Borys B,Grabska-Liberek I

    更新日期:2019-01-01 00:00:00

  • Optic neuropathy: A 15-year retrospective observational study.

    abstract:BACKGROUND:Optic neuropathies (ON) have several aetiologies and sometimes the diagnosis established ab initio is redefined after further investigations and/or new neurological events. We aim with this study to report clinical, paraclinical findings, treatment choices and disease course in patients admitted with a suspi...

    journal_title:Multiple sclerosis and related disorders

    pub_type: 杂志文章

    doi:10.1016/j.msard.2020.102337

    authors: Alves JM,Seabra M,Braz L,Guimarães J

    更新日期:2020-09-01 00:00:00

  • COVID-19 in ocrelizumab-treated people with multiple sclerosis.

    abstract:BACKGROUND:There are limited data on the impact of coronavirus disease 2019 (COVID-19) caused by the severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) on people with multiple sclerosis (MS). OBJECTIVE:To better understand SARS-CoV-2 infection in ocrelizumab-treated people with MS. METHODS:Internal Roche/Ge...

    journal_title:Multiple sclerosis and related disorders

    pub_type: 杂志文章

    doi:10.1016/j.msard.2020.102725

    authors: Hughes R,Whitley L,Fitovski K,Schneble HM,Muros E,Sauter A,Craveiro L,Dillon P,Bonati U,Jessop N,Pedotti R,Koendgen H

    更新日期:2020-12-30 00:00:00

  • Epidemiology and comorbidities of adult multiple sclerosis and neuromyelitis optica in Taiwan, 2001-2015.

    abstract:BACKGROUND:The epidemiology of multiple sclerosis (MS) and neuromyelitis optica (NMO) remains to be clarified or updated in many parts of Asia. This study aims to investigate the epidemiology and comorbidities of MS and NMO during 2001-2015 in Taiwan. METHODS:We conducted a retrospective nationwide population-based st...

    journal_title:Multiple sclerosis and related disorders

    pub_type: 杂志文章

    doi:10.1016/j.msard.2020.102425

    authors: Fang CW,Wang HP,Chen HM,Lin JW,Lin WS

    更新日期:2020-10-01 00:00:00

  • Longitudinal associations between brain structural changes and fatigue in early MS.

    abstract:BACKGROUND:Fatigue is a common and disabling symptom of multiple sclerosis (MS) patients. Structural changes in several brain areas have been reported to correlate with fatigue in MS patients but none consistently. OBJECTIVE:To study the association between global and regional measures of brain atrophy and fatigue in ...

    journal_title:Multiple sclerosis and related disorders

    pub_type: 杂志文章

    doi:10.1016/j.msard.2015.10.006

    authors: Nourbakhsh B,Azevedo C,Nunan-Saah J,Maghzi AH,Spain R,Pelletier D,Waubant E

    更新日期:2016-01-01 00:00:00

  • Capillary leak syndrome in neuromyelitis optica treated with rituximab.

    abstract::61-year-old woman with Neuromyelitis optica (NMO) diagnosis treated with rituximab was referred to our hospital with severe hypovolemic shock and anasarca. The laboratory findings showed marked hemoconcentration and a decrease in total serum protein. She developed a multiple organ failure and died three hours later. W...

    journal_title:Multiple sclerosis and related disorders

    pub_type: 杂志文章

    doi:10.1016/j.msard.2017.06.001

    authors: Fuentes Fernandez I,Hernandez-Clares R,Carreón Guarnizo E,Meca Lallana JE

    更新日期:2017-08-01 00:00:00