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 allocation, and identification of unmet needs is important to optimise care and inform governmental resource distribution. AIM:To identify unmet needs of MS patients in 3 areas during an Irish epidemiology study. PATIENTS AND METHODS:Observational study in 3 regions in Ireland: South Dublin SCD (an urban area), Donegal DGL and Wexford WEX (rural counties).A validated Needs Assessment Questionnaire (NAQ) was completed by MS patients at research clinics, or by telephone if unable to attend. RESULTS:We identified 632 patients with multiple sclerosis: 23% SCD (urban), 30.8% WEX, and 46.2% DGL.MS subtype was relapsing remitting (RR) in 51.1%, secondary progressive (SP) in 39.7%, and primary progressive (PP) in 9.2%. EDSS was =6 in 86% and >6.5 in 14%. NAQ was completed by 325 (49.9%).Group A: 155 (47.7%) reported no unmet needs relating to MS.Group B: 170 (52.3%) reported unmet needs relating to MS,including all in a group continuing to use disease-modifying therapy without benefit (EDSS>6.5).Number of unmet needs per patient in group B: 1 need 27%, ≥2 needs 73%, ≥5 24%.Unmet needs overall correlated with EDSS >6.5 (p<0.001),MS subtype: RR 36.4%/SP 69.8%/PP 59.5% (p<0001),increased age (p 0.003) and MS duration (p 0.003). Multivariate analysis: presence of unmet needs related to higher EDSS (p<0.001), rural residence (p<0.05), SPMS (p<0.05).Financial unmet needs frequency differed by county: DGL 23.9%, WEX 17%, SCD 10.4% (p 0.045) and marital status: 24% single, 13.5% married (p 0.03).Multivariate analysis: related to rural residence (p<0.05), being single (p<0.05).Occupational therapy (OT) unmet needs frequency differed by subtype:RR 6%/SP 24.5%/ PP 19% (p 0.001), MS duration: 19.7 v 14.8y (p 0.003)and increasing age: 52.5 v 45.8y (p 0.0006).Multivariate analysis: rural, older age, higher EDSS (p<0.05).Physiotherapy unmet needs frequency differed by subtype: RR 17.2%/SP 43.4%/PP 31.7% (p<0.001), MS duration (p<0.001), and age (p 0.002).Multivariate analysis: related to higher EDSS (p<0.001).Employment unmet needs frequency differed by gender:male 22.9%, female 12.8% (p 0.02).Social unmet needs frequency differed by subtype: RR 12%/SP 39.2%/PP 32.5%, MS duration and age (p 0.001): multivariate analysis: SPMS (p<0.001). DISCUSSION:More than 50% reported unmet needs relating to MS: suggesting non-pharmacological needs are not optimally addressed, particularly in older, single, rural residents, with greater EDSS and progressive non-relapsing MS. Physiotherapy offers significant benefits, but is the most frequently reported unmet need.These findings highlight the need for increased fund allocation, especially for development of community supports and multidisciplinary/ social services.Identifying unmet needs may help inform health service planning, and emphasises particular need for improved resources in a high-risk group of MS patients.
journal_name
Mult Scler Relat Disordjournal_title
Multiple sclerosis and related disordersauthors
Lonergan R,Kinsella K,Fitzpatrick P,Duggan M,Jordan S,Bradley D,Hutchinson M,Tubridy Ndoi
10.1016/j.msard.2015.01.003subject
Has Abstractpub_date
2015-03-01 00:00:00pages
144-50issue
2eissn
2211-0348issn
2211-0356pii
S2211-0348(15)00004-8journal_volume
4pub_type
杂志文章,多中心研究abstract::Lay-members of the public are often involved in grant and ethics review panels. Furthermore grant applications/reports all require some form of lay summary. In response to critical remarks from people with multiple sclerosis (MS) about using the term 'sufferer' as a descriptor, a series of surveys using the internet/s...
journal_title:Multiple sclerosis and related disorders
pub_type: 杂志文章
doi:10.1016/j.msard.2013.06.010
更新日期:2014-01-01 00:00:00
abstract:BACKGROUND:The appropriate treatment target in multiple sclerosis (MS) is unclear. Lack of magnetic resonance imaging (MRI) lesion activity, a component of the no evidence of disease activity concept, has been proposed as a treatment target in MS. We used our MS database to investigate whether aggressively pursuing MRI...
journal_title:Multiple sclerosis and related disorders
pub_type: 杂志文章
doi:10.1016/j.msard.2016.07.017
更新日期:2016-09-01 00:00:00
abstract::Multiple sclerosis (MS) is an inflammatory, demyelinating, neurodegenerative, immune-mediated disease primarily diagnosed in early adulthood. Multiple sclerosis mostly impacts women of reproductive potential, with pregnancy and birth outcomes being major concerns for many patients. While there is ample evidence that t...
journal_title:Multiple sclerosis and related disorders
pub_type: 杂志文章,评审
doi:10.1016/j.msard.2019.04.003
更新日期:2019-07-01 00:00:00
abstract:BACKGROUND:Pain can interfere with the daily functioning of persons with multiple sclerosis (PwMS). Furthermore, beliefs about pain and activity engagement are reliably associated with persons' experience of chronic pain. This study aimed to explore the extent to which different aspects of PwMS' activity engagement is ...
journal_title:Multiple sclerosis and related disorders
pub_type: 杂志文章
doi:10.1016/j.msard.2019.101882
更新日期:2020-02-01 00:00:00
abstract:INTRODUCTION:All people with progressive MS in the United Kingdom should have access to physiotherapy through the National Health Service (NHS). However levels of access and delivery are unknown. Furthermore there is no research on perceived efficacy of physiotherapy or the use of complementary and alternative medicine...
journal_title:Multiple sclerosis and related disorders
pub_type: 杂志文章
doi:10.1016/j.msard.2017.01.002
更新日期:2017-02-01 00:00:00
abstract:BACKGROUND:Numerous factors can affect multiple sclerosis (MS) patients' quality of life (QoL). We investigated how physical impairment, upper extremity function, cognitive impairment, cognitive reserve, symptoms of psychological distress, depression, fatigue as well as age and disease duration contribute to patient-re...
journal_title:Multiple sclerosis and related disorders
pub_type: 杂志文章
doi:10.1016/j.msard.2019.01.049
更新日期:2019-05-01 00:00:00
abstract::Neoplasms and reactivation of latent viruses have been observed in individuals taking fingolimod. Merkel cell carcinoma (MCC), a rare neuroendocrine skin cancer, is associated with immunosuppression and can be triggered by the oncogenic Merkel cell polyoma virus (MCPyV). We report a case of a 61-year-old man with mult...
journal_title:Multiple sclerosis and related disorders
pub_type: 杂志文章
doi:10.1016/j.msard.2017.06.004
更新日期:2017-10-01 00:00:00
abstract:BACKGROUND:Multiple sclerosis (MS) is an inflammatory autoimmune neurologic disease that causes progressive destruction of myelin sheath and axons. Affecting more than 2 million people worldwide, MS may presents distinct clinical courses. However, information regarding key gene expression and genic pathways related to ...
journal_title:Multiple sclerosis and related disorders
pub_type: 杂志文章
doi:10.1016/j.msard.2020.102243
更新日期:2020-09-01 00:00:00
abstract:BACKGROUND:Dysphagia is a life-threating symptom in patients with multiple sclerosis (MS) because aspiration pneumonia develops as a consequence of swallowing disorders. Dysphagia can be detected by using patient-reported outcome measures in order to prevent complications. OBJECTIVE:To identify the dysphagia prevalenc...
journal_title:Multiple sclerosis and related disorders
pub_type: 杂志文章
doi:10.1016/j.msard.2020.102397
更新日期:2020-10-01 00:00:00
abstract:BACKGROUND:Cognitive impairment and psychiatric symptoms impact many aspects of the lives of people with multiple sclerosis [MS]. This literature is based largely on North American and Western European samples, and little is known about these aspects of MS disability in Latin America. OBJECTIVE:RELACCEM is a longitudi...
journal_title:Multiple sclerosis and related disorders
pub_type: 杂志文章
doi:10.1016/j.msard.2013.10.007
更新日期:2014-05-01 00:00:00
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
更新日期:2020-06-01 00:00:00
abstract:BACKGROUND:Olfactory dysfunction has been linked to clinical severity variables in multiple MS populations. Though, its prognostic value is still unknown. OBJECTIVE:The aim of this study was to explore the long-term outcome associated with Brief-Smell Identification Test (B-SIT) performance in a cohort of MS patients....
journal_title:Multiple sclerosis and related disorders
pub_type: 杂志文章
doi:10.1016/j.msard.2020.102486
更新日期:2020-11-01 00:00:00
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
更新日期:2019-12-20 00:00:00
abstract:BACKGROUND:Peak width of skeletonized mean diffusivity (PSMD) is a novel and fully automated, MRI biomarker, which has shown clinical relevance in cerebral small vessel diseases (SVD). We aimed here to assess PSMD levels across the brain of patients with multiple sclerosis (MS), in comparison to normal controls (NC) an...
journal_title:Multiple sclerosis and related disorders
pub_type: 杂志文章
doi:10.1016/j.msard.2018.11.011
更新日期:2019-01-01 00:00:00
abstract:BACKGROUND:Growing evidence supports the efficacy of restorative cognitive training in people with multiple sclerosis (PwMS), but the effects vary across individuals. Differences in treatment efficacy may be related to baseline individual differences. We investigated clinical characteristics and MRI variables to predic...
journal_title:Multiple sclerosis and related disorders
pub_type: 杂志文章
doi:10.1016/j.msard.2019.06.026
更新日期:2019-09-01 00:00:00
abstract::Fingolimod, taken orally once per day, is approved for the treatment of relapsing-remitting multiple sclerosis (MS). It should be stopped at least two months before conception as it is not considered safe during pregnancy or when breast feeding. In vitro and animal studies have found a possibly increased risk of conge...
journal_title:Multiple sclerosis and related disorders
pub_type: 杂志文章
doi:10.1016/j.msard.2018.02.015
更新日期:2018-04-01 00:00:00
abstract::Multiple Sclerosis (MS) is an autoimmune disease in which lymphocytes target putative myelin antigens in the CNS, causing inflammation and neurodegeneration. Fingolimod (FTY720) is an immunosuppressive drug used as a second line therapy for relapsing forms of MS due to its safety profile and good response to treatment...
journal_title:Multiple sclerosis and related disorders
pub_type: 杂志文章
doi:10.1016/j.msard.2017.05.004
更新日期:2017-11-01 00:00:00
abstract:BACKGROUND:Multiple Sclerosis (MS) patients find it difficult to understand the complex risk-benefit profiles of disease-modifying drugs. An evidence-based protocol was designed to improve patient's understanding of treatment information: Benefit and Risk Information for Medication in Multiple Sclerosis (BRIMMS). OBJE...
journal_title:Multiple sclerosis and related disorders
pub_type: 杂志文章
doi:10.1016/j.msard.2021.102737
更新日期:2021-01-12 00:00:00
abstract:BACKGROUND:Multiple sclerosis (MS) is the most common chronic inflammatory demyelinating disease of the central nervous system (CNS), and whether herpes simplex virus (HSV) infection is associated with the development of MS remains controversial. We aimed to investigate potential associations between MS or clinically i...
journal_title:Multiple sclerosis and related disorders
pub_type: 杂志文章
doi:10.1016/j.msard.2020.102633
更新日期:2020-11-19 00:00:00
abstract::Visual symptoms are a common clinical manifestation of multiple sclerosis (MS) and are frequently due to acute optic neuritis (ON). However, the entire visual pathway can be involved throughout the disease course. We describe the case of a young MS patient who experienced visual symptoms that were eventually found to ...
journal_title:Multiple sclerosis and related disorders
pub_type: 杂志文章
doi:10.1016/j.msard.2017.08.008
更新日期:2017-10-01 00:00:00
abstract::Neural cell adhesion molecule (NCAM) has been studied extensively. But it is only in recent times that interest in this molecule has shifted to conditions such as Alzheimer's disease, Multiple Sclerosis and Schizophrenia, focusing on its role in neurodegeneration and abnormal neurodevelopment. NCAM is important in neu...
journal_title:Multiple sclerosis and related disorders
pub_type: 杂志文章,评审
doi:10.1016/j.msard.2012.08.002
更新日期:2013-01-01 00:00:00
abstract:BACKGROUND/AIMS:Mesenchymal stem cells (MSCs) transplantation has been considered a possible therapeutic method for Multiple Sclerosis (MS). However, no quantitative data synthesis of MSCs therapy for MS exists. We conducted a systematic review and meta-analysis to evaluate the effects of MSCs in experimental autoimmun...
journal_title:Multiple sclerosis and related disorders
pub_type: 杂志文章,评审
doi:10.1016/j.msard.2020.102200
更新日期:2020-09-01 00:00:00
abstract:OBJECTIVE:To investigate the predictive factors associated with good outcomes of plasma exchange in severe attacks through neuromyelitis optica spectrum disorder (NMOSD) and long extensive transverse myelitis (LETM). In addition, to review the literature of predictive factors associated with the good outcomes of plasma...
journal_title:Multiple sclerosis and related disorders
pub_type: 杂志文章
doi:10.1016/j.msard.2017.02.015
更新日期:2017-04-01 00:00:00
abstract:BACKGROUND:Multiple sclerosis can cause cardiovascular autonomic dysfunction. It is assumed that is caused by multiple demyelinating plaques localized in the brain stem and spinal cord. Previous studies have determined this using tilt table test, heart rate responses to Valsalva maneuver and deep breathing and heart ra...
journal_title:Multiple sclerosis and related disorders
pub_type: 杂志文章
doi:10.1016/j.msard.2018.06.012
更新日期:2018-08-01 00:00:00
abstract::Thrombotic microangiopathy (TMA) is a rare but increasingly recognized complication of interferon-beta therapy, which can be associated with serious sequelae. We report on a 53-year-old woman with a longstanding history of relapsing-remitting multiple sclerosis, who developed TMA after 15 years of high-dose treatment ...
journal_title:Multiple sclerosis and related disorders
pub_type: 杂志文章
doi:10.1016/j.msard.2016.09.002
更新日期:2016-11-01 00:00:00
abstract:BACKGROUND:The 2015 criteria for diagnosing neuromyelitis optica spectrum disorder (NMOSD) have encouraged several groups across the world to report on their patients using these criteria. The disease typically manifests with severe relapses of optic neuritis, longitudinally extensive myelitis and/or brainstem syndrome...
journal_title:Multiple sclerosis and related disorders
pub_type: 杂志文章
doi:10.1016/j.msard.2018.11.031
更新日期:2019-01-01 00:00:00
abstract:BACKGROUND:Patient-reported outcomes (PROs) provide information on treatment effects from the patient's perspective that complement outcomes on clinical measures. In DECIDE, daclizumab demonstrated superior efficacy in reducing relapses, 24-week confirmed disability progression, and brain lesions (assessed by magnetic ...
journal_title:Multiple sclerosis and related disorders
pub_type: 杂志文章,随机对照试验
doi:10.1016/j.msard.2016.11.005
更新日期:2017-01-01 00:00:00
abstract:BACKGROUND:Aquaporin 4 (AQP4)- and myelin oligodendrocyte glycoprotein (MOG)-associated neuromyelitis optica spectrum disorders (NMOSD) are thought to primarily affect the central nervous system (CNS). However, emerging evidence suggests that there are extra-CNS manifestations of NMOSD, including myopathies, gastrointe...
journal_title:Multiple sclerosis and related disorders
pub_type:
doi:10.1016/j.msard.2020.102032
更新日期:2020-06-01 00:00:00
abstract:BACKGROUND:Alemtuzumab significantly improved clinical and MRI outcomes vs. subcutaneous interferon beta-1a (SC IFNB-1a) in the CARE-MS trials (NCT00530348, NCT00548405), with sustained efficacy in 2 consecutive extensions (NCT00930553, NCT02255656 [TOPAZ]). METHODS:Post hoc analysis of 8-year alemtuzumab efficacy and...
journal_title:Multiple sclerosis and related disorders
pub_type: 杂志文章
doi:10.1016/j.msard.2020.102717
更新日期:2020-12-24 00:00:00
abstract::Multiple sclerosis is a chronic inflammatory and neurodegenerative disease of the central nervous system, and it is one of the most common neurological cause of disability in young adults. It is known that several factors contribute to increase the risk of development and pathogenesis of multiple sclerosis, nonetheles...
journal_title:Multiple sclerosis and related disorders
pub_type: 杂志文章,评审
doi:10.1016/j.msard.2020.102189
更新日期:2020-09-01 00:00:00