scholarly journals International consensus on quality standards for brain health-focused care in multiple sclerosis

2018 ◽  
Vol 25 (13) ◽  
pp. 1809-1818 ◽  
Author(s):  
Jeremy Hobart ◽  
Amy Bowen ◽  
George Pepper ◽  
Harriet Crofts ◽  
Lucy Eberhard ◽  
...  
Keyword(s):  
Multiple Sclerosis ◽  
Treatment Effectiveness ◽  
Care Pathway ◽  
Disease Onset ◽  
Quality Standards ◽  
Cell Loss ◽  
Service Evaluation ◽  
Brain Health ◽  
International Consensus ◽  
Time Frames

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. A multidisciplinary Reviewing Group (MS nurses, people with MS, allied healthcare professionals) provided insights ensuring recommendations reflected perspectives from multiple stakeholders. Results: Twenty-one MS neurologists from 19 countries reached consensus on most core (25/27), achievable (25/27) and aspirational (22/27) time frames at the end of five rounds. Agreed standards cover six aspects of the care pathway: symptom onset, referral and diagnosis, treatment decisions, lifestyle, disease monitoring and managing new symptoms. Conclusion: These quality standards for core, achievable and aspirational care provide MS teams with a three-level framework for service evaluation, benchmarking and improvement. They have the potential to produce a profound change in the care of people with MS.

scholarly journals Adapted exercise interventions for persons with progressive multiple sclerosis

2013 ◽  
Vol 38 (3) ◽  
pp. 357-357 ◽  
Author(s):  
Lara A. Pilutti
Keyword(s):  
Multiple Sclerosis ◽  
Disease Onset ◽  
Progressive Multiple Sclerosis ◽  
Mental Functioning ◽  
Brain Health ◽  
Exercise Interventions ◽  
Beneficial Effects ◽  
Mental Symptoms ◽  
Total Body

Multiple sclerosis (MS) is an immune-mediated neurodegenerative disease that results in a myriad of physical and mental symptoms. Current disease-modifying therapies do not prevent long-term disability accumulation and are particularly ineffective for patients with a progressive disease onset. Exercise may represent an alternative strategy for managing symptoms and disability accumulation, particularly in progressive MS. Whereas the benefits of exercise have been established primarily in ambulatory MS patients with a relapsing disease course, few studies have investigated the benefits of exercise for patients with progressive MS with greater impairment. Therefore, the purpose of this dissertation was to determine the short-term, long-term, and maintenance effects of adapted exercise interventions for patients with progressive MS of high disability, which was addressed by conducting 2 adapted exercise interventions. The first intervention examined the effects of 24 weeks of body-weight-supported treadmill training (BWSTT) on outcomes of physical and mental functioning, fatigue, quality of life (QoL), and brain health. Outcomes were evaluated at baseline, 12 weeks, and 24 weeks following the intervention, and again 12 weeks postintervention. The second intervention evaluated and compared the effects of 12 weeks of total-body recumbent stepper training (TBRST) with BWSTT on outcomes of safety, physical and mental functioning, fatigue, QoL, and equipment preference. Safety of BWSTT and TBRST was established. Significant improvements in fatigue and QoL were observed with both training modalities; however, neither significantly improved physical function. There was some evidence to suggest that long-term BWSTT may improve cognitive performance and brain health, and that TBRST was the preferred exercise modality. Furthermore, most beneficial effects of long-term BWSTT tended not to be maintained when exercise was discontinued. This dissertation established evidence for the potential benefits of BWSTT and TBRST in patients with progressive MS with high disability. BWSTT and TBRST may represent viable alternative strategies for disease management.

064 Expert consensus on standards for multiple sclerosis care: results from a modified delphi process

2018 ◽  
Vol 89 (6) ◽  
pp. A26.2-A26
Author(s):  
Helmut Butzkueven ◽  
Jeremy Hobart ◽  
Amy Bowen ◽  
Lucy Eberhard ◽  
George Pepper ◽  
...  
Keyword(s):  
Multiple Sclerosis ◽  
Care Pathway ◽  
Quality Care ◽  
High Standard ◽  
Delphi Process ◽  
List Type ◽  
Modified Delphi ◽  
Disease Modifying Therapy ◽  
Key Steps ◽  
Time Frames

IntroductionThe importance of prompt intervention in multiple sclerosis (MS) was described in the widely endorsed report, Brain health: time matters in multiple sclerosis.1 The present study aimed to define standards for the timing of key steps in the care pathway.MethodsAn international group of 29 MS neurologists was recruited from regions with high MS prevalence to participate in a modified Delphi process. Across five rounds, they defined ‘core’, ‘achievable’ and ‘aspirational’ time frames (to reflect a minimum, good and high standard of MS care, respectively). A 31-member Reviewing Group of MS nurses, experts with MS and allied healthcare professionals reviewed the results and provided feedback to four Chairs.ResultsConsensus was reached (≥75% agreement; n=21) on core, achievable and aspirational time frames for events spanning the MS care pathway. Here, we will present 21 achievable standards related to referral, diagnosis, treatment decisions, monitoring and managing new symptoms. For example, the Panel agreed that most MS teams should be aiming to1 complete a diagnostic workup for MS within 4 weeks of a patient being referred to a neurologist,2 assess patient eligibility for a suitable disease-modifying therapy within 3 weeks of diagnosis,3 perform follow-up clinical evaluations every 6 months, and4 offer an annual MRI scan.ConclusionThese standards will inform tools for clinics and people with MS and act as a potential future benchmark for established and developing MS clinics across the globe aiming to deliver the highest quality care.Reference. Giovannoni G, et al. Mult Scler Relat Disord2016;9(Suppl 1):S5–S48.

scholarly journals Cognitive Issues in Pediatric Multiple Sclerosis

2021 ◽  
Vol 11 (4) ◽  
pp. 442
Author(s):  
Emilio Portaccio ◽  
Ermelinda De Meo ◽  
Angelo Bellinvia ◽  
Maria Pia Amato
Keyword(s):  
Multiple Sclerosis ◽  
Cognitive Impairment ◽  
Cognitive Decline ◽  
Pediatric Patients ◽  
Leisure Activities ◽  
Disease Onset ◽  
Cognitive Profiles ◽  
Brain Growth ◽  
Network Activation ◽  
Definition Of

Multiple sclerosis (MS) is one of the leading causes of disability in young adults. The onset of MS during developmental age makes pediatric patients particularly susceptible to cognitive impairment, resulting from both disease-related damage and failure of age-expected brain growth. Despite different test batteries and definitions, cognitive impairment has been consistently reported in approximately one-third of pediatric patients with MS. However, the lack of a uniform definition of cognitive impairment and the adoption of different test batteries have led to divergent results in terms of cognitive domains more frequently affected across the cohorts explored. This heterogeneity has hampered large international collaborative studies. Moreover, research aimed at the identification of risk factors (e.g., demographic, clinical, and radiological features) or protective factors (e.g., cognitive reserve, leisure activities) for cognitive decline is still scanty. Mood disorders, such as depression and anxiety, can be detected in these patients alongside cognitive decline or in isolation, and can negatively affect quality of life scores as well as academic performances. By using MRI, cognitive impairment was attributed to damage to specific brain compartments as well as to abnormal network activation patterns. However, multimodal MRI studies are still needed in order to assess the contribution of each MRI metric to cognitive impairment. Importantly, longitudinal studies have recently demonstrated failure of age-expected brain growth and of white matter (WM) and gray matter (GM) maturation plays a relevant role in determining cognitive dysfunction, in addition to MS-related direct damage. Whether these growth retardations might result in specific cognitive profiles according to the age at disease onset has not been studied, yet. A better characterization of cognitive profiles in pediatric MS patients, as well as the definition of neuroanatomical substrates of cognitive impairment and their longitudinal evolution are needed to develop efficient therapeutic strategies against cognitive impairment in this patient population.

scholarly journals Multiple Sclerosis in Malaysia: Demographics, Clinical Features, and Neuroimaging Characteristics

2013 ◽  
Vol 2013 ◽  
pp. 1-10 ◽  
Author(s):  
S. Viswanathan ◽  
N. Rose ◽  
A. Masita ◽  
J. S. Dhaliwal ◽  
S. D. Puvanarajah ◽  
...  
Keyword(s):  
Multiple Sclerosis ◽  
Neuromyelitis Optica ◽  
Demyelinating Disease ◽  
Age At Onset ◽  
Positive Family History ◽  
Disease Onset ◽  
Demyelinating Diseases ◽  
Lesion Length ◽  
Relapsing Remitting ◽  
Spectrum Disorders

Background. Multiple sclerosis (MS) is an uncommon disease in multiracial Malaysia. Diagnosing patients with idiopathic inflammatory demyelinating diseases has been greatly aided by the evolution in diagnostic criterion, the identification of new biomarkers, and improved accessibility to neuroimaging in the country.Objectives. To investigate the spectrum of multiple sclerosis in Malaysia.Methods. Retrospective analysis with longitudinal follow-up of patients referred to a single tertiary medical center with neurology services in Malaysia.Results. Out of 245 patients with idiopathic inflammatory demyelinating disease, 104 patients had multiple sclerosis. Female to male ratio was 5 : 1. Mean age at onset was 28.6 ± 9.9 years. The Malays were the predominant racial group affected followed by the Chinese, Indians, and other indigenous groups. Subgroup analysis revealed more Chinese having neuromyelitis optica and its spectrum disorders rather than multiple sclerosis. Positive family history was reported in 5%. Optic neuritis and myelitis were the commonest presentations at onset of disease, and relapsing remitting course was the commonest disease pattern observed. Oligoclonal band positivity was 57.6%. At disease onset, 61.5% and 66.4% fulfilled the 2005 and 2010 McDonald’s criteria for dissemination in space. Mean cord lesion length was 1.86 ± 1.65 vertebral segments in the relapsing remitting group as opposed to 6.25 ± 5.18 vertebral segments in patients with neuromyelitis optica and its spectrum disorders.Conclusion. The spectrum of multiple sclerosis in Malaysia has changed over the years. Further advancement in diagnostic criteria will no doubt continue to contribute to the evolution of this disease here.

scholarly journals AB1174 TRACKING THE EFFECTS ON A CLINICAL SERVICE OF INTRODUCING ULTRASOUND FOR DIAGNOSIS OF GIANT CELL ARTERITIS: DESIGN OF A SERVICE EVALUATION USING LEAN METHODOLOGY

2020 ◽  
Vol 79 (Suppl 1) ◽  
pp. 1877.2-1878
Author(s):  
S. Mackie ◽  
A. Barr ◽  
A. Cracknell ◽  
S. Farrell ◽  
J. Parvin ◽  
...  
Keyword(s):  
Lead Time ◽  
Axillary Artery ◽  
Care Pathway ◽  
Temporal Artery ◽  
Service Evaluation ◽  
Significant Shift ◽  
Temporal Artery Biopsy ◽  
Prednisolone Dose ◽  
Patient Feedback ◽  
The Impact

Background:In our large, multi-site hospital, patients with suspected GCA are started promptly on high-dose prednisolone but until 2019, patients waited for temporal artery biopsy (TAB) until the GCA diagnosis could be confirmed (“GCA”) or refuted (“not-GCA”). Reports of the impact of introducing temporal and axillary artery ultrasound (TAUS) have mainly come from smaller hospitals. Agreement between TAUS and TAB has been reported by others with a Cohen’s kappa of 0.35 [1] and 0.40 [2]. We used Lean methodology to identify metrics across 5 key domains: delivery, quality, service, morale and cost.Objectives:To design metrics for a service evaluation to measure impact of introducing TAUS, and to test their feasibility of measurement within routine care.Methods:Our primary driver was time from presenting to our service to diagnostic confirmation (lead time). Pathway mapping, value stream mapping and a driver diagram identified key ideas for improvement.We chose to measure: Delivery (mean lead time for each month), Quality (proportion of patients with GCA and positive TAB/TAUS; total (cumulative) prednisolone dose in patients with not-GCA, Service (patient feedback), Morale (staff feedback) and Cost (number of patients; cost of tests per patient; overall costs). We plotted these by month on run charts and defined a significant shift as 6 consecutive monthly values below baseline median. Cohen’s kappa was calculated using GraphPad QuickCalcs.Results:Routine TAUS for suspected GCA was introduced from January 2019, alongside a multidisciplinary team monthly meeting. TAUS was done a median of 2.5 days from referral. Agreement between TAB and TAUS results was good (Table 1). The run chart showed a significant shift in our Delivery (median lead time fell from 28.7 days to 21 days after introduction of ultrasound) and both Quality metrics (proportion of GCA with positive TAB/TAUS increased from 29% to 69%; total prednisolone dose for not-GCA fell from 1.335g to 0.846g).Table 1.Concordance between temporal and axillary artery ultrasound (TAUS) and temporal artery biopsy (TAB) in scans performed through 2019. Cohen’s weighted kappa 0.59 (including equivocal results as separate category).TAUS positiveTAUS negativeTAUS equivocalTAB positive1411TAB negative5275TAB equivocal030Within Costs, average per-patient costs of TAB/TAUS declined from £1004/patient to £792/patient, but total referrals for TAB/TAUS increased from 6/month to 10/month, increasing overall costs. Staff and patient feedback (Service, Morale) revealed that further improvements to the care pathway were needed to manage the additional complexity.Conclusion:Lean methodology identified multiple metrics for evaluating the impact of TAUS on our service. Introducing TAUS improved Delivery and Quality, but measuring Costs, Morale and Service helped identify unintended consequences. Concordance between TAUS and TAB was good. We plan to continue to improve and monitor the care pathway based on our multi-stakeholder feedback.References:[1]Luqmani et al., HTA 2016[2]Mukhtyar et al., Clin Rheum 2019Disclosure of Interests:Sarah Mackie Grant/research support from: Roche (attendance of EULAR 2019; co-applicant on research grant), Consultant of: Sanofi, Roche/Chugai (monies paid to my institution not to me), Andrew Barr: None declared, Alison Cracknell: None declared, Shannon Farrell: None declared, Jimmy Parvin: None declared, Ajay Patil: None declared, Ian Simmons: None declared, Kate Smith Grant/research support from: Medical education grants from Sanofi and Biogen, Speakers bureau: Novartis, Andrea Sweeting: None declared, Max Troxler: None declared, Tara Webster: None declared, Richard Wakefield Speakers bureau: Novartis, Janssen, GE

The global prevalence of familial multiple sclerosis: an updated systematic review and meta-analysis

2021 ◽  
Author(s):  
Naeim Ehtesham ◽  
Maryam Zare Rafie ◽  
Meysam Mosallaei
Keyword(s):  
Multiple Sclerosis ◽  
Web Of Science ◽  
Meta Analysis ◽  
Disease Onset ◽  
Inclusion Criteria ◽  
Multifactorial Diseases ◽  
Pooled Prevalence ◽  
Significant Difference ◽  
Meta Regression ◽  
Genetic And Environmental Factors

Abstract Background: Considering that familial multiple sclerosis (FMS) can reveal the extent to which genetic and environmental factors each involve in the etiopathogenesis of the disease, we performed an updated meta-analysis of the worldwide prevalence of FMS by addition of recent publications. Methods: A search in PubMed, Scopus, the ISI Web of Science, and Google Scholar up to 20 December 2020 was done. The inclusion criteria were based on the CoCoPop approach (condition, context, and population). The qualified studies entered the process of the meta-analysis by using comprehensive meta-analysis ver. 2 software.Results: The pooled prevalence of MS in relatives of 16179 FMS cases was estimated to be 11.8% (95% CI: 10.7-13) based on a random-effects model. The pooled mean age of disease onset in adult probands was calculated to be 28.7 years (95% CI: 27.2± 30.2). In 13 studies that reported the data of FMS in pediatrics (n=6636) and adults (n=877), the FMS prevalence was 10.8% (95% CI: 8.1-14.2) and 15.5% (95% CI: 13.8-17.4), respectively. Considering the data of 9 studies, the prevalence of FMS in males (n=5243) and females (n=11503) patients was calculated to be 13.7% (95% CI: 10.1-18.2) and 15.4% (95% CI: 10.3-22.4), respectively. The odds ratio of male/female in FMS cases was not statistically significant (OR= 0.9; 95% CI: 0.6-1.2, P=0.55). Subgroup analysis demonstrated a significant difference in the prevalence of FMS between the geographical areas (P= 0.007). The meta-regression model for FMS prevalence was significantly lower in terms of higher latitude (P< 0.001) and increased MS prevalence (P< 0.001). In contrast, meta-regression based on prevalence day was not statistically significant (P=0.29).Conclusions: The prevalence of FMS is more in the pediatric group than that of adults, is distinct between geographical areas, and diminishes with the increment of MS prevalence and latitude. Also, the symptoms initiate relatively at lower ages in FMS cases. By contrast with multifactorial diseases, our analysis unveiled that the prevalence of FMS was not more prevalent in men than women and the risk of MS development in relatives was not more when the affected proband was male.

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