MS Network of Care Multiple Sclerosis Network of Care Australia

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Evaluating Multiple Sclerosis Interventions

Inappropriate Benchmarks can be a Major Problem

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For some time the efficacy of many MS interventions (including advocacy) has, to varying degrees. been benchmarked against improvements in neurological indications of MS and/or the impact upon MS symptoms (as reported by those with MS). Frequently this is predicated on the hypothesis that the cause of MS is an autoimmune dysfunction whereby the body produces an inflammatory reaction against its own tissue - in this case myelin. 
From around 2010 a concurrent stream of neurovascular explorations revisited earlier research that identified cardiovascular irregularities as a significant factor in MS progression. In consequence it is now reliably reported that the majority of those with MS have underlying cardiovascular disorders that adversely disrupt bloodflow. Included is the previously unidentified vein irregularity known as Chronic Cerebrospinal Venous Insufficiency. Vascular comorbidities, whether present at MS symptom onset, diagnosis, or later in the disease course, are associated with a substantially increased risk of MS disability progression .

More broadly there now is unequivocal evidence
that the blood clotting protein Fibrinogen, in the case of those with progressive MS, is extensively deposited in the motor cortex. The role of the primary motor cortex is to generate neural impulses that control the execution of movement. This severe fibrin(ogen) deposition is accompanied by significantly reduced neuronal density.
Cardiovascular Benchmarks are essential
For all of these reasons the efficacy of MS interventions (at a host of levels) needs to also be benchmarked against blood flow improvements and relief from many of the most common symptoms of MS. In this regard in June 2017 the Australian Health Minister, the Hon Greg Hunt MP was asked to clarify the ways in which Australia's health system might best respond to growing concerns about the prevalence of cardiovascular problems in MS
Nationally agreed Benchmarks are needed
On 14 July 2017 the Minister responded by highlighting the role of the National Strategic Framework for Chronic Conditions, developed in partnership with all States and Territories, (as released by the Australian Government on 22 May 2017) in moving away from a disease specific approach to working towards a more effective approach to chronic conditions and their risk factors.

The National Framework identifies a wide range of benchmarks to facilitate this process, for example "Timely and appropriate detection and intervention reduces the risk of chronic conditions and/or disease severity". GPs are identified as having an important ''Early Warning" role in this process. For these reasons it should be expected that, as greater awareness develops about the ways that cardiovascular irregularities can underpin MS progression, it is likely that GP’s will pick up on potential MS signals much earlier - more about the Framework
Complementary and Alternative Medicines and Practices (CAM) are no exception
The World Health Organisation (WHO) defines CAMs as “a broad set of health care practices that are not part of that country’s own tradition and are not integrated into the dominant health care system.” They include diets, exercise regimes, other drugs such as cannabis, and some psychological therapies.

Broader Benchmarks are needed - an example
On 31 August 2017 MS Research Australia, in an article titled "Alternative therapies: more evidence needed'' reported on a study of complementary and alternative medicines (CAMs) in MS by the Menzies Institute for Medical Research in Australia. Likely influenced by the "autoimmune" hypothesis as a benchmark they reported that only a small percentage of the studies identified in PubMed were well designed and used robust scientific methods.

The report
identified, from 1,916 PubMed references, 38 studies of a similar design to that used to test new drugs or other conventional therapies. These 38 studies mainly investigated the effects of cannabis, diet and supplements, exercise, and psychological approaches to treating MS. The same conclusions were reached by the American Academy of Neurology in a similar review published in 2014. The report concluded "If you are considering taking a CAM instead of, or in combination with, a conventional therapy, we recommend that you discuss this with your treating physician".
Patient Centred Perspectives
Snapshots of the benefits and drawbacks of a host of MS interventions and experiences are also available through the HorizonsSCAN database.  Described as a unique resource for families living with MS, service providers, researchers, policy advisors and parliamentary representatives it currently comprises more than 1,700 titles - 50% of which include PubMed abstracts balanced by, real world patient centred experiences. Examples, referencing topics highlighted by the August 2017 Menzies Institute review, follow:
the Big Picture
Exercise Diet and
Cannabis Vascular
The HoriZonsSCAN abstracts also identify significant vascular improvements associated with the aforementioned CAM type interventions. What makes HoriZonsSCAN different is that it brings together, and prioritises, both quantitative and qualitative evidence (from a diverse range of global resources) to enable a greater shared understanding of the decision-making processes involved in the provision of MS care -  on the part of researchers, practitioners, patients and carers. While ‘qualitative evidence’ may lack the scientific rigor of, for instance, randomised controlled trials, there is growing acceptance that it brings a body of knowledge that complements these other forms of evidence.

Associated HoriZonsSCAN patient-centred benchmark abstracts
1. Benchmarks for Evaluating MS and Vascular Interventions
This severe fibrin(ogen) deposition is accompanied by significantly reduced neuronal density. Cardiovascular Benchmarks are essential For ... needs to also be benchmarked against blood flow improvements ... in MS Nationally agreed Benchmarks are needed On 14 ... a wide of benchmarks to facilitate this ... psychological therapies. Broader Benchmarks are needed - an

2. Rights of those with Disabilities - An Australian MS Perspective   
Strategy as outlined below (taking a rights-based approach). Superior Leadership in times of change Benchmarks Nominations from those ... inclusive practices. r Leadership Benchmarks have universal ''Patient-Centred" ... Centred Leadership the aforementioned benchmarks are relevant across all ... to all of these benchmarks. Without such wholehearted commitment

3. Benchmarks for Advocating on behalf of those with MS
Leadership in times of change Benchmarks Nominations from those who go above and beyond are well regarded, as are nominations that reflect a rights-based approach and truly capture the spirit of the Awards and their intent. The judging panel particularly looks at nominations that support the community and universal-based approaches underpinning the

4. Multiple Sclerosis - What is Patient-Centred Care?
The importance of a patient-centred approach to MS care has been highlighted in the literature for more than a decade.. It involves moving away from the ‘one size fits all theory’ by recognising the need to develop services with patients, users and carers rather than for them. ... Map highlights some of the key concepts of this approach. ... Over the last

5.  Charter of Rights & Expectations when Living with MS
Referral Pathways and Benchmarks A common theme in research relating to MS ... These guidelines were adopted by the Pathways Project as benchmarks for identifying and prioritising shortfalls in regional service delivery. The inclusion of regional 'effectiveness' indicators for each benchmark identified services most in need of review. Living with

6. Multiple Sclerosis Primary Care Standard - Access to Lifetime Continuous Care
Australia and in the case of multiple sclerosis, no such nationally endorsed benchmarks exist . This is unfortunate. The absence ... Agency (NDIA ) also highlighted the importance of benchmarks when it identified its number 1 goal ... the triennial comparisons highlighting rehabilitation access trends benchmarked against these pathways. This project was conducted

7, NHMRC advice - lack of  MS Care Standards
Without benchmarks that establish a right to specific aspects of care, enormous pressure is placed on people with MS, their families and all of those entrusted with their care" On 25 November 2011 the National Health and Medical Research Council (NHMRC), Australia's peak body for supporting health and medical research including clinical trials and

8. Why does Australia lack Nationally endorsed MS Diagnosis/Care Guidelines?
The absence of such benchmarks makes it extremely difficult to evaluate ... the case of multiple sclerosis, no such benchmarks exist. This is unfortunate. The absence of ... that the use of the guidelines as benchmarks to underpin evaluations of access to services ... relating to MS prevalence cross referenced to benchmarks for addressing care needs according to disability

9.  Guidelines for Multiple Sclerosis Service Providers - The Basics
Australia by comparing approaches to delivering services to pwMS with internationally recognised benchmarks and practices - especially practices in the UK and USA. While the project was confined to one Australian region the methodology, potentially, has broad application. THE FIVE UNDERPINNING GUIDELINES Of significance, the Pathways Review Team identified

10. Evaluating Multiple Sclerosis Service Delivery - Importance of Benchmarks
Only then can a service be truly call patient-centred. A NEED FOR EVALUATION BENCHMARKS Fundamental to the ... enable the establishment of evaluation benchmarks for ongoing enhancements in service ... which is audited against these benchmarks. A process of continual improvement ... practice. The inclusion of 'empowerment' benchmarks in the mapping process further

11. Consensus based Common Ground - MS Vascular Associations
vein dimensions whereas the correct benchmark relates to the measurement of disturbed blood flow. Compounding all of this was a highly variable range of operator skills and diagnostic capabilities. The outcomes of some were not treated kindly when peer reviewed – some others were discontinued prior to completion. Much was learnt. Conversely the outcomes
12. Establishing the VHISS Bloodflow Baseline for every patient is critical
Angioplasty (PTA ) makes a difference in relieving the symptoms of multiple sclerosis by improving cerebrospinal venous drainage. Benchmarks In November 2011, Australia’s ... range of patient centred, evidence based benchmarks. Among these is a model that ... key question . Important CCSVI related evaluation benchmarks include 1. Dr Bavera's Evaluation



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