Gatekeeper proposal

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PAINLESS – PhysicalActivityIN muLtipLE ScleroSis

We invite you to take part in a research study. Before you decide whether to participate in the study, we would like you to understand why the research is being conducted and what your participation would involve. Please take the time to read the following information attentively and discuss with others should you wish.

Purpose of the study.

This is a study about chronic pain in the Multiple Sclerosis (MS) population. Those with a diagnosis of MS are likely to experience mobility problems with an associated reduction in activities of daily living and health-related quality of life score. Previous studies highlight fatigue, spasticity, and lower limb weakness as contributing factors of this. Chronic pain has also been documented as having an impact on mobility and quality of life in patients. However, to date, there is little research as to how chronic pain affects these factors in people with MS. Therefore, we wish to study to what extent there is a difference between physical activity in people with MS with chronic pain versus those without.

The study will run over a seven-day period whereby you will be required to complete questionnaires and undertake a simple gait analysis. You are asked to wear a wrist-worn physical activity accelerometer which will record lifestyle physical activity and sleep as you continue life as normal in your usual environment.

Why have I been invited to participate?

Those with a diagnosis of MS who can walk one hundred metres unaided without resting are invited to participate. We hope to recruit a minimum of twenty participants who may or may not have chronic pain as a symptom of MS.

Do I have to take part?

It is entirely your choice as to whether to take part in the study. If you do decide to participate you will receive this information sheet and a privacy notice documenting how your data will be collected, used, and stored. You will be asked to give written consent to participate however, you are free to withdraw your participation in the study at any point without explanation.

What will happen to me if I take part? 

The study will take place over a seven-day period. You will be asked to complete the 36-Item Short Form Health Survey at the start of the study as a measure of health-related quality of life. We ask that you undertake a simple gait analysis at the start of the study period. This involves a ten metre walk and is measured via an easily accessible mobile phone application which is simple to use. Participants will be asked to wear the AX3-axivity accelerometer on the wrist for the seven days. This device is worn like a watch and records physical activity and sleep. It does not require any user knowledge and can be worn at all times. Participants will be required to complete a Numerical Pain Rating Scale assessment three times a day which takes less than thirty seconds to complete. At the end of each day, we ask that you complete the Brief Pain Inventory Short Form also. These questionnaires will allow us to determine how pain affects mobility as you go about your normal day in the community.

What are the possible disadvantages and risks of taking part? 

We do not anticipate that there are any disadvantages to your participation. Equipment and instructions will be posted to your home address, and we ask that you conduct your week as you normally would. There are no costs involved in participating however, we do require that you wear the device for the full seven days.

We would like to reassure you that there is no need to change your day-to-day physical activity whilst being monitored. The aim is to record what is normal for you.

We understand that quality of life questionnaires contain sensitive information and completion of the questionnaire may evoke feelings of distress or anxiety.

If you feel anxious or distressed, we urge you to seek help immediately:

Samaritans Helpline Number: 116 123. Web Link: https://www.samaritans.org/how-we-can-help/contact-samaritan/

Mind Information and Signposting Line: 0300 123 3933. Web Link: https://www.mind.org.uk/information-support/helplines/

What are the possible benefits of taking part?

There are no direct benefits for individuals who take part. The study aims to benefit the MS population as a whole in furthering our understanding of the effects of chronic pain on physical activity. We hope that in furthering our knowledge in this area we may use this study as a basis for further research.

Will what I say in this study be kept confidential?

Should you decide to partake, you will receive a participation code not linked to any personal details. Hereby we ensure that your participation and data is confidential and would not allow any entity (apart from the research team, as long as the study is ongoing) to trace the data back to belong to you (within the limitations of the law).

Research data will be kept secure at all times, and data digitally transferred from your home will be encrypted to the highest standard and stored on a clinical database held at Oxford Brookes University.

Data processing, generation and retention will be kept in a pseudonymised state during the study. After completion of the study, any link between you and your data will be eliminated resulting in fully anonymised data and kept for a duration of ten years post completion under the ownership of Dr Patrick Esser, Reader at the Centre for Movement, Occupation and Rehabilitation Sciences (brookes.ac.uk/mores). 

What should I do if I want to take part?

If you would like to participate in the study, please email Joni at 19019494@brookes.ac.uk to express your interest. This study will run from July 2022 to November 2022. You are welcome to use the above email address if you have any questions about this study. Please do get in touch, we will be happy to discuss the research and answer any questions that may arise.

What will happen to the results of the research study?

The results of this study will be used in the dissertation of my Medical Sciences degree. If we achieve our recruitment targets and satisfy the scientific rigour I am to deliver, we will consider a scientific publication in the field of physical activity and chronic pain in MS with a potential of presenting results at relevant conferences. In addition, we will aim to provide an overall study summary back to you as a participant and the wider MS community local to Oxford via their support and community networks. 

Who is organising and funding the research?

I am conducting the research as an undergraduate Medical Sciences student at Oxford Brookes University within the Department of Biological and Medical Sciences under the supervision of Dr Patrick Esser, Department of Sport, Health Sciences and Social Work. 

Who has reviewed the study?

This research study has been approved by the University Research Ethics Committee, Oxford Brookes University.

Contact for Further Information

Should you have questions or concerns about any aspect of this study please do not hesitate to contact Joni Bousie at 19019494@brookes.ac.uk who will endeavour to answer any questions. Formal complaints can be raised with the Project Supervisor, Dr Patrick Esser at pesser@brookes.ac.uk. Concerns or complaints about the way in which the study has been conducted should be raised with the Chair of the University Research Ethics Committee on ethics@brookes.ac.uk.

Thank you for taking the time to read this information sheet and considering taking part. 

PARTICIPATE IN RESEARCH             

DO YOU LIVE WITH MULTPILE SCLEROSIS?

Project Supervisor: Dr Patrick Esser Researcher: Joni Bousie Department of Biological and Medical Sciences. Contact information: To ask questions or express an interest in participating please contact: Joni Bousie 19019494@brookes.ac.uk  

CONSIDER TAKING PART IN A STUDY ON ACTIVITY AND PAIN IN MS.

WHAT IS THIS STUDY ABOUT?

The aim of this research is to understand how everyday physical activity may affect chronic pain in MS.

WHO CAN PARTICIPATE?

Participants in the research will:

WHAT IS INVOLVED?

The study involves completing questionnaires and recording their physical activity in their usual environment.

WHAT ARE THE BENEFITS OF PARTICIPATING?

There are no benefits to the individual in participating. It is anticipated the study will develop understanding and lead to further research in the management of MS.

Complete this survey on bladder and bowel issues

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Coloplast, who work with the NHS to provide bladder and bowel clinics, are facilitating an international MS survey and they are looking for people with MS to complete it.

The aim of the survey is to get a better understanding of the challenges that people living with MS experience, particularly when it comes to bladder and bowel issues.  

The survey will only take approximately 15 minutes to complete and the information you share will remain anonymous and only be used for research purposes to help improve care and solutions.

To complete the survey, please follow this link

Posture and MS

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Poor posture is a common problem for people with multiple sclerosis.

The MS Trust website has some very useful web pages which explain what posture is all about, why good posture is so important and suggest some practical steps to improve your posture in everyday situations. They look at good and bad posture in standing, sitting and lying and examine the relationship of the postural muscles – the deep muscles in your stomach and back – with arm function and balance. The pages include helpful videos, tips and links to further information.

These pages are intended to complement information given to you by health professionals and act as a reminder of advice you may have been given. They are not intended to replace the thorough assessment of a health professional.  If you have specific concerns, seek the advice of a therapist.

To find out more, visit The MS Trust website

Support for disabled people to address the cost of living crisis

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You may have seen that the Chancellor recently announced a £15 billion package of targeted government support to help with the rising cost of living. This includes support for disabled people and people on benefits. 

The Chancellor announced the following measures, which the UK government say will target support for the most vulnerable:

  • All households will receive a £400 discount on energy bills. Energy bill payers do not need to repay this. 
  • Eight million of the lowest income families will also get a one-off payment of £650 – this includes people who get Universal Credit or legacy benefits like Employment Support Allowance (ESA). The payment will be in two lumps sums, the first in July and the second in the autumn, with payments from HMRC for those on tax credits shortly after. The payment will be tax-free, will not count towards the benefit cap, and will not have any impact on existing benefit awards. 
  • In September there will be a one-off disability cost of living payment of £150 to people claiming disability benefits like Personal Independence Payment (PIP), and pensioners will get £300.

You can find out more information about these measures, and the ongoing campaign to increase financial support for people with MS, on the MS Society website. 

Help the centre to raise vital funds, it really all helps……

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Do you every shop online at Amazon? Then please do so by first going to www.omstc.org.uk (our website) and clicking on the amazon logo at the top of the page.  It really is that easy!   This raises about 5% of the money spent for OMSTC and does not cost you a penny! Right now we make roughly £30 a month from this source, but it could so easily be a lot more.    
   

Then please do so by first going to

Wanted If you have been doing a clear out and have the following items to dispose of then please bring them in for us. We can use them to raise much needed funds through Recycling for Good Causes. Jewellery (any material, wearable or broken) Watches Used Stamps (especially from your Christmas cards) Gadgets (mobile phones, cameras, satnav, game consoles, tablets, MP3, etc) Unwanted currencies (all those foreign coins and banknotes from your holidays no matter how old) You only need to bring them into the centre and we will do the rest!    
The Multiple Sclerosis Therapy Centre Oxfordshire  is registered with easyfundraising, which means you can raise FREE donations for us every time you shop online. Over 6,000 shops and sites will donate to us when you use easyfundraising to shop with them – at no extra cost to yourself! These donations really mount up and make a BIG difference to us, so we’d really appreciate it if you could take a moment to sign up and support us. It’s completely FREE and only takes a moment. You can find our easyfundraising page at https://www.easyfundraising.org.uk/causes/omstc  
 

Volunteer Oxygen Operators Needed

Posted by & filed under Centre News.

We are in desperate need for more volunteer oxygen operators. If you know anyone who would be interested ask them to contact Sue at the centre.  You would be required one or more if possible mornings a week for initial training.  See attached job description.  Please forward to your family and friends.

Time matters: should British people with MS accept sup-optimal care? 

Posted by & filed under MS News.


 
MAY 18 • 11M
Time matters: should British people with MS accept sup-optimal care?
In the #AttackMS trial we are comparing starting natalizumab within 2 weeks of symptom onset to those starting natalizumab after 2 months. Yes, we really think time matters in MS.
Listen now
 GAVIN GIOVANNONI   

Nothing is hidden. If you look carefully, you will find all you need to find. In the study of newly diagnosed Scottish patients with MS, close to 40% had hidden disabilities such as depression, anxiety, fatigue, sleep disturbance, cognitive impairment and pain. Are these MS-related problems really hidden? Yes, hidden from the eye but detectable by simply asking the right questions and assessing the function of the nervous system using standard techniques. 

A remarkable 26% of subjects were on antidepressants, 18% were unemployed, 36% had motor difficulties, 36% had balance, incoordination, double vision or swallowing problems and 12% had bladder or bowel problems at symptom onset. 

These observations are not new and have been well documented in other studies. This study confirms that early MS is not really early MS, and a large proportion of pwMS have evidence of the damaging effects of untreated inflammation on the function of the nervous system. 

In the majority of these subjects, the hidden symptoms remained unchanged, but in approximately a quarter, the symptoms improved after the diagnostic period. DMTs had no major influence on the hidden disability burden over a period of about one year. However, subjects treated with fingolimod and cladribine, higher efficacy DMTs, had a more favourable outcome. Is this not an argument for flipping the pyramid and using high-efficacy DMTs first-line in more pwMS? Is it not time to leave the less effective platform therapies as a historical footnote? In this cohort, over 1 in 5 patients were started on injectables (interferon-beta or glatiramer acetate).

What is quite remarkable is that this study represents 45% of the newly diagnosed people with MS in Scotland over the study period, with an average time between symptom onset and diagnosis of 18 months. This is a problem. If early inflammation imprints on the brain and spinal cord, waiting 18 months to be diagnosed and then a further period of time to be started on treatment comes at a cost. Unfortunately, the latter information is not reported in the paper. I am aware from other studies in the UK that the time from diagnosis to initiating DMTs is variable and can take anything from 2 months to 9 months depending on the kind of service the patients attend, i.e. a specialist centre versus a district general hospital requiring patients to then be referred to a specialist centre for treatment.

These delays due to systemic problems in the NHS cost our patients’ brain and spinal cord. These delays are the main reason we produced the ‘Brain Health: Time Matters’ policy document and the follow-on quality standards (see paper 2 below) to try and create the carrot and stick to sort out the unnecessary and unacceptable delays in the diagnosis and management of pwMS.

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We are even taking this ‘Time Matters’ approach to the extreme with our #AttackMS trial, in which we are comparing pwMS started on natalizumab within 2 weeks of symptom onset to those starting natalizumab after 2 months. Yes, we really think time matters in MS; this study will tell us if weeks matter.

In our International Quality standards, which were developed by international consensus, we state the diagnosis of MS should be made within 2 months and a DMT treatment offered within a similar timeframe. Please note these are just the core standards, and we challenge the MS community to do better than this.

Consensus standards for timely, brain health-focused MS care agreed by at least 75% of the Delphi Consensus Panel related to (a) referral and diagnosis, (b) priorities following diagnosis, (c) routine monitoring and support, (d) treatment decisions, (e) new symptoms and (f) additional statements that were not time limited.

Sadly the NHS fails on these metrics, and the costs to pwMS in the UK is likely to be substantial. What can we do about it? We need more resources and a more responsive system to deal with MS. This can be done. The NHS has proven that if there is a will, there is a way to achieve things. It has been done for the management of stroke and, to some extent, with the two-week pathway for suspected cancer. Why can’t we get a 2×2 month pathway for the diagnosis and treatment of MS? Is this too little to expect from our national health service?

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Paper 1

Glasmacher et al. The influence of disease-modifying therapy on hidden disability burden in people with newly diagnosed relapsing-remitting multiple sclerosis. Mult Scler Relat Disord. 2022 Apr 30;63:103837. 

Background: In addition to motor disability, “hidden disability” such as depression, anxiety, fatigue, sleep disturbance, cognitive impairment and pain is a major complaint of people with multiple sclerosis. We explored changes in hidden disability burden in the early post-diagnostic period and examined the hypothesis that disease modifying therapies have a beneficial effect on hidden disability burden.

Methods: Adults with recently diagnosed (< 6 months) relapsing-remitting multiple sclerosis (n = 440, mean age 37.4 ± 10.4, 76% female), from a national multicentre cohort study (FutureMS) underwent testing with clinical and neuropsychological instruments as well as brain MRI at baseline and after 12-months. Disease modifying therapies were only started after baseline assessment and were classified into injectables (n = 70, interferons, glatiramer acetate), other DMTs (n = 215) and no DMT (n = 117, reference). Sensitivity analyses were undertaken using alternative classifications (disease modifying therapy vs none, and a 3-category system). We performed latent transition analysis with hidden disability burden as the latent variable including propensity score weights.

Results: We identified three classes with low (58%), moderate (25%) and high (17%) hidden disability burden. 70% did not transition (“unchanged”, reference), 26% transitioned into a lower burden class (“improvement”) and 4% transitioned into a higher burden class (“worsening”). Median treatment duration was 11 months (IQR 9-12). Injectables [OR 1.3 (95%CIs 0.7, 2.3); P = 0.4] and other DMTs [OR 1.4 (95%CIs 0.9, 2.1); P = 0.2] were not associated with significant change in hidden disability burden in either direction (“improvement” or “worsening”). In the alternative 3-category classification, category 2 treatment (fingolimod, cladribine, n = 22) was associated with improvement [OR 4.3 (2.6, 7.0); P < 0.001].

Conclusion: Hidden disability was present in most newly diagnosed people with multiple sclerosis. The majority remained unchanged and approximately a quarter improved over the immediate post-diagnostic period. Disease modifying therapy had no significant influence on hidden disability burden in the study period of one year following diagnosis. The trend towards favourable outcomes with fingolimod and cladribine should be interpreted with caution due to the small sample size. Our exploratory data are observational, with scope for attendant biases, but highlight the need for further study including longer-term evaluation as well as randomised trials for non-motor disability.

Paper 2

Hobart et al. International consensus on quality standards for brain health-focused care in multiple sclerosis. Mult Scler. 2019 Nov;25(13):1809-1818. 

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.

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