R-squared

R

Barts-MS rose-tinted-odometer: ★★★★★

R-squared = resilience x reciprocity

Resilience = the capacity to recover quickly from difficulties; toughness.

Reciprocity = the practice of exchanging things with others for mutual benefit, especially privileges granted by one country or organization or person to another.

Health and wellness can’t be taken for granted. For the body and mind to navigate life as best it can it needs to be prepared for its eventualities, which in some cases are a certainty. At the beginning of the COVID-19 pandemic, I actively promoted the concept of prehabilitation, i.e. doing everything you can do to improve your general health so that if you got COVID-19 you could deal with it and hopefully prevent yourself from getting severe COVID-19 and thereby reduce your chances of dying from the infection and/or its complications. 

Another way of looking at this concept is building ‘biological resilience’, in other words, maximising your ability to recover quickly or cope with difficult situations be they infections, trauma (falls and fractures), MS relapses or even disease worsening. 

Prehabilitation is preventive medicine. Prehabilitation is undertaking a health & wellness programme to deal with a known stressor in the near future. In surgery, this is typically a planned or an elective surgical procedure, such as a hip or knee replacement or cardiac surgery. However, widening the concept to medicine, for example, to include so-called known-knowns, unknown-knowns and known-unknowns in relation to immune therapies make sense. 

Known-knowns = these are adverse events that are known to occur in relation to specific immunotherapy, for example, hypogammaglobulinaemia from prolonged treatment with anti-CD20 therapy. In terms of a specific prehabilitation programme, you could check and manage hypogammaglobulinaemia as it develops or develop a new treatment paradigm (induction-maintenance) that derisks patients when they develop hypogammaglobulinaemia. 

Unknown-knowns = adverse events that have not been described yet, but based on scientific principles are likely to occur in the future, for example, meningococcal septicaemia and meningitis in patients on anti-CD20 therapy. This prediction based on the observation that people who have had a splenectomy or have low IgM levels from other causes are more susceptible to infections with so-called encapsulated bacteria such as meningococcus. In terms of incorporating this into a prehabilitation programme would be to offer patients the meningococcal vaccine if they are at high risk of being exposed to meningococcus (army recruits, university students, etc.). 

Known-unknowns = adverse events in people with other diseases on a particular treatment that has yet to be described in people with MS on the same treatment. For example, people with rheumatoid arthritis and lupus treated with ocrelizumab were more likely than control subjects to get pneumococcal pneumonia. Therefore, we can assume that pwMS on ocrelizumab are increased risk of pneumococcal infections. Part of the prehabilitation programme, to derisk this, would be to ensure all pwMS have the pneumococcal vaccine prior to starting an anti-CD20 therapy and to then have their boosters every 5 years. 

The examples I give above should be relatively easy to understand but are passive in that they rely on the HCPs to have systems in place to derisk specific MS DMTs. However, when it comes to optimising your general health so that you have biological resilience the story is different. Here you as pwMS need to engage with the general principles of prehabilitation and prepare yourself, for example, to help make sure the infections you acquire are mild and to maximise your chances of making an uncomplicated recovery. 

This is when reciprocity applies, i.e. the practice of exchanging knowledge with your HCP for mutual benefit. In other words, by you entering into a well-defined partnership with your HCP you will hopefully maximise your outcome and at the same time to reduce healthcare expenditure. In this partnership, your HCPs (neurologist, MS nurse, GP, etc.) will inform you of the aims of the programme, which may include some healthcare intervention, for example, vaccinations to prevent specific infections, an exercise programme to prevent falls, dietary advise to lose weight, medication to help you stop smoking, a social prescription for a personal trainer, which then it requires you to adhere to the programme. Reciprocal agreements are based on trust and only work if you trust each other (I wonder if the British and EU politicians understand this?). 

These concepts of resilience and reciprocity go well beyond the management of MS and apply to health in general and other social and political interactions. For example, in the UK the NHS will always look after you if you develop a disease, but the NHS or greater society are asking you to be more careful with your life choices so as to reduce your risk of getting certain diseases in later life. Unfortunately, the behavioural interventions that public health bodies and the NHS promote are not always backed-up by the actions of our politicians, for example, an adequate sugar tax or minimal pricing of a unit of alcohol to act as disincentives for obesity and its associated ills and alcohol misuse, respectively. 

Saying this I think we need to start activel working into our thinking ways to include R-squared into healthcare. What can we do to make the MS population more resilient? What do we need to do to remind both HCPs and pwMS that the optimal management of MS is based on reciprocity?

Having suffered a catastrophic loss of wellness with my recent accident makes me realise that my relatively rapid recovery has something to do with my general health and fitness (physiological resilience) and my determination to remain positive (mental resilience). However, my recovery back to a new normal now requires me to stick to my rehabilitation programme. The surgeons did what they were trained to do, i.e. fix and stabilise my fractures, and the next phase of my recovery is up to me. I have been given an exercise programme by my physiotherapists and medication to help deal with the pain. My part of the relationship is to take the medication and stick to my exercise programme. 

To paraphrase John F. Kennedy’s historic quote in his inaugural presidential lecture, “Ask not what your country can do for you – ask what you can do for your country”. “Ask not what the NHS or your MS team can do for you – ask what you can do to manage your own MS”. What can you do to build physical and mental resilience and how can you optimise the reciprocal relationship with your MS team to make this happen? 

In reality, the concepts of r-squared (resilience x reciprocity) are what we are really trying to achieve via our Raising-the-Bar initiative as part of the MS Academy.  The only difference is there is another tier above the HCP-Patient relationship in that we need to interact with the NHS or healthcare system to make sure that the necessary resources or infrastructure are in place to implement r-squared. 

As people with MS do you think the issues raised in this post are relevant to you? How would you feel if we developed a formal agreement or contract for both parties to sign in relation to the HCP-patient partnership? The latter is not a new concept and is used widely in psychiatry. 

Crowdfunding: Please note I manage to walk over 3 km yesterday and it is looking likely I will be able to walk 5 km before the 31st of December.  It is not a done deal yet so if you haven’t supported my challenged there is still time 😉 We are getting very close to our fund-raising target so hopefully, this will be the final push and I can stop promoting fundraising. For those who have given already, thank you.  Click on the link to support Prof G’s ‘Bed-to-5km Challenge’  to support MS research. 

CoI: multiple

Twitter: @gavinGiovannoni                                      Medium: @gavin_24211

About the author

Prof G

Professor of Neurology, Barts & The London. MS & Preventive Neurology thinker, blogger, runner, vegetable gardener, husband, father, cook and wine & food lover.

12 comments

  • A good beginning.
    What I think of Resilience: What doesn’t kill you makes you stronger.
    You don’t always know what your patients have been through.
    Wouldn’t hurt to have them reveal their major life stressors.
    Education is Key.
    Respectfully,HCP Prescribing a healthy lifestyle is not necessarily a successful plan.
    With MS telling me to be active might get me laughing.
    I do the best I can.
    Dictating a program Is about Compliance. I don’t comply easily.
    If I slip on my diet will my HCP Scold me or blame me for a relapse?
    I envision a Care Plan, short term and long term goals.
    HCP and Patient have their own chart section.
    In between appointments Patients keep their health notes.
    Both HCP and Patients benefit from more complete information. Can see trends. More objective.
    As a Patient, I do want to be a partner with my Doctors. I just don’t do well with being dictated to.
    Educate, encourage, emotional support. E to the third power 😎

  • Don’t encourage him. Why do you think I’m swimming if not to take the heat off and in hopes of him not falling apart before the rods come out!

    PS Now you’ve sown the seeds of medical insurrection, how about bunging both of us a tenner? Thanks if you already have. I’m posting some pics of last week’s swims on Just Giving when I finish 8,9,&10.

    • I think you can only sign-up to what you can deliver. If you don’t have resources you will be creating unrealistic expectations.

      • Sorry I meant the pwms should check that their CCG provides everything they need if they are to sign up to an agreement. If the pwms agrees to deliver something then find they need assistance such as neurophysiotherapy or neuropsychology they are going to fail if they can’t pay private when they find their CCG doesn’t provide that support. You contributed to the cost of your rehab, not everyone can do that. Not knocking that at all but there is still this unfair postcode lottery issue where some will get it and others won’t.

        Some people may need physical and mental rehab before they are in a position to embark on prehab, but the resources aren’t necessarily there.

        I would have no problem with an agreement, I imagine it would be helpful, always better to know what to expect from each other to avoid disappointment. In fact as far as DMT’s go I would say it’s a must, I wouldn’t take one without knowing in advance how and when I would be monitored.

    • Spot on, they rarely do . So much of what should be Primary health care falls on the hospital, GP’s are a huge part of the problem. involvement can be ill-informed, disinterested and hopelessly ineffective. Classic example the first lockdown, So many msers were just shut out locally. same will probably happen with vaccines.

  • To be blunt I think this is one of those things that sound great from a physician point of view and frustrates patients to no end. Sure, some would benefit. But there are many patients with MS that have already been extremely proactive with their health, got MS anyway, do everything they can to stay healthy, and still feel frustrated. For example, in the US at least, there is no oversight or coordination between specialties. To manage comorbidities as a patient you get no help, have to reach out to different specialists, ensure you stay up on your appointments, and bring information from one to the next to ensure they all have up to date information. It is a herculean undertaking for any person, much less a person suffering from a neurological disease and the mental and physical fatigue that goes with it. Being a “good” MS patient is exhausting. As a proactive patient a “pact” like this would do nothing to improve my life or outcome as I already do all I can.
    What I wish we had more of in the neurologist community is more urgency to treat proactively and prevent damage – more of an oncology mindset. There are too many neurologists willing to adopt a “wait and see” approach and that is dangerous with an incurable progressive life-changing disease whose damage, once allowed to occur, is permanent. Personally that would be my higher priority as an issue to tackle. Address that, then you can talk to patients about what more they can do.

    • Agreed. Every time I read about an MS Team in this blog I still have a shake of the head response as there is no such thing in the US. Our system is based on billing codes and since whatever the patient does has no billing expense, much of the care gets off-loaded to the patient who is the least trained and able to navigate the system despite doing loads of research.

      • I like the idea of Rsquared.

        Can I suggest you adopt a broader definition of ‘resilience’ though? It is not really about bouncing back to normality much as we would like to. Many now use the term to include adaption to a changing situation. For example, in a resilient town that has been flooded residents will not only get together to support each other and repair their homes etc. but prepare to respond to future flooding. This could take many forms but adapting is the key.

        Learning to adapt (in a changing world) is an essential component of resilience. Prehabilitation is an example. This is obviously the case for anybody with MS and help to do this should be part of any support we get preferably as part of a long term relationship.

        I think reciprocity also means learning from each other as I’m sure you do Prof.

  • I like the idea of Rsquared.

    Can I suggest you adopt a broader definition of ‘resilience’ though? It is not really about bouncing back to normality much as we would like to. Many now use the term to include adaption to a changing situation. For example, in a resilient town that has been flooded residents will not only get together to support each other and repair their homes etc. but prepare to respond to future flooding. This could take many forms but adapting is the key.

    Learning to adapt (in a changing world) is an essential component of resilience. Prehabilitation is an example. This is obviously the case for anybody with MS and help to do this should be part of any support we get preferably as part of a long term relationship.

    I think reciprocity also means learning from each other as I’m sure you do Prof.

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