Walk beside me…just be my friend

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“Don’t walk in front of me… I may not follow
Don’t walk behind me… I may not lead
Walk beside me… just be my friend”
― Albert Camus

Since lock-down or ‘knock-down’ as I like to call it, I’ve succumbed to the reading club.

I have just completed the reading of ‘Motion of the body through space’ by Lionel Shriver, which in my haloed opinion is the most depressive book that I’ve had the displeasure to read…in like forever (you can tell that this wasn’t my pick). What’s even more disappointing is that this book is less titillating than a book I actually possess, entitled simply ‘Duck’ by Victoria de Rijke; chronicling all facts duck (don’t ask).

Why the torture? Not for inclusivitiy as some of you might think, but the said reading club comprises some of my closest friends. Hence, imagine my surprise that this study has found that wider social networks are more beneficial in MS than close-knit ones, particularly when it comes to physical function. This is a problem, especially, when as adults we tend to cull our useless friends. This is part of growing up.

According to this article those with close-knit social networks reported greater physical impairment.

Is this part of some weird enablement that exists in close-knit groups? Not sure. I believe it may reflect more the exclusionary nature of a physically disabling disorder, such as MS. Ergo, a reverse effect outcome.

“Patients inhabit dynamic networks, which serve as conduits for healthcare information and behaviors, thereby influencing cardiovascular outcomes, cancer prognosis, and overall mortality. Social networks range from small, close-knit cohorts of family and friends, to large clusters of loosely connected acquaintances. The latter groups are less constrained networks that enable the flow of novel information and exposure to different resources. Consequently, they may have a favorable impact on health outcomes in neurological diseases where early symptom recognition and access to new therapies are beneficial.”

The authors noted an inverse relationship between physical function (PROMIS physical T-score) and constraint; which is a measure of the tight-knit structure in a social network (see Figure below). According to the authors ‘social networks’ may in fact be a significant environmental factors in MS.

Figure: Forest plots of personal social network metrics and their relationship to neurological outcomes. For each cohort, the standardized beta coefficients from linear regressions of network metrics were plotted for PROMIS (A) and MSRS-R (B). Higher scores on PROMIS indicate better physical function, whereas higher scores on MSRS-R indicate greater disability. Each square is the βcoefficient, and each line is the 95% confidence interval (95% CI) of a network metric after adjustment for covariates. The diamond represents the summary βcoefficient and 95% CI after a fixed-effects meta-analysis of the two cohorts. Constraint was inversely associated with PROMIS and directly associated with MSRS-R in the meta-analyses.

Definitely, as the authors point out, a longitudinal study is needed to dissect this further. I believe this is where the MS societies have a role to play; set up the meet-ups, the exercise groups and reading clubs. Be inclusive.

Abstract

Neurology. 2020 Aug 7;10.1212/WNL.0000000000010460. doi: 10.1212/WNL.0000000000010460. Online ahead of print.

Association of Social Network Structure and Physical Function in Patients With Multiple Sclerosis

Objective: To test the association between physical function and the social environment in multiple sclerosis (MS), we quantified personal social networks.

Methods: In this cross-sectional study, we analyzed data from two academic MS centers, with center one serving as a discovery group, and center two as the extension group. We performed a meta-analysis of the centers to extend the analysis. We used responses from a questionnaire to map the structure and health habits of participants’ social networks, and the NIH Patient-Reported Outcomes Measurement Information System (PROMIS) physical function scale (0-100, mean 50 for US general population) as the primary outcome. We applied multivariable models to test the association between network metrics and physical function.

Results: The discovery cohort included 263 MS patients: 81% were women, 96% non-Hispanic European, 78% relapsing MS, average age 50 (12.4) years, and mean disease duration 17 (12.3) years. The extension group included 163 patients, who were younger, more racially diverse, less physically disabled, and had shorter disease duration. In the meta-analysis, higher network constraint, a measure of tightly-bound networks, was associated with worse physical function (β=-0.163+0.047, p<0.001), while larger network effective size, a measure of clustered groups in the network, correlated with better physical function (β=0.134+0.046, p=0.003).

Conclusions: Our study highlights personal networks as an important environmental factor associated with physical function in MS. Patients with close-knit networks had worse function than those with more open networks. Longitudinal studies are warranted to evaluate a causal relationship between network structure and physical impairment.

About the author

Neuro Doc Gnanapavan

14 comments

  • This appears to me to be a self fulfilling prophesy. Of curse someone with more disability has a smaller social circle. The idea that there’s causation is ridiculous.

    • As always some sense in interpretation of the data is needed. It would be difficult to tease apart the chicken or egg scenario in this one. A longitudinal study the always taps into cognition and mood may show the interaction better.

  • I prefer to keep my MS and friends separate.

    An MS patient meet up doesn’t appeal to me, unless it is a formal conference on research.

  • How are “close knit networks” defined? The fact that disability may lead to a smaller radius of activity does not necessarily mean that the people one comes in contact with within that radius are actually “close friends”. I suspect that the question could and maybe should be asked the other way around: “does the lack of wider networks/social contacts have any impact on disability?”. If there exists a connection, then mental wellbeing could possibly be a mediator. Social contacts that are not as close as, say, immediate family may challenge as more, or we may challenge ourselves more with regard to them. I notice this in my own case. If I am tired and don’t want to go for a walk, my family accepts this without discussion. If I am “out in the field” in my job – that I love – then walking may be required and I will make a different kind of effort to do the necessary walking as far as is physically possible. I also get more varied and new stimuli from the wider field than from my immediate family where behaviour is more predictable. So I think mentally, wider networks – the “wider world” – can provide more “pull factors” for us to challenge ourselves more than our immediate close networks. Probably depends on personality and mental health, though – I love that sort of challenge but am well aware that not everybody does so or is able to take advantage of it. Disability may make being part of wider networks more difficult. However, I have people with severe physical disabilities among my acquaintances who are in constant exchange with big networks of people internationally. That said, in my country people with severe disabilities from ms (and from other conditions) often have no other living choice than residential care. There, a big question is how these institutions can make exchange and relations with the “outside world” possible in a “normalized” fashion. Though these institutions are very well funded compared with other countries, a lack of money or staff is often cited as hindering such possibilities. To have normal relationships with a variety of people outside the “forced” close relationships with those with the same or similar disabilities tends to be the greatest wish of the people with disabilities in these institutions.

    • The network firstly requires the participant to identify those who they discussed important matters, socialised with, or sought support from in the last 3 months. A network of the ties is then quantified based on size, density, constraint, effective size etc. Constraint is the extent to which network members have ties to each other, whilst effective size is the inverse of this and refers to members who occupy structurally unique positions in the network.

      They then looked at the relationship between social network metrics listed above and self-reported physical function (PROMIS) and used associations that occurred more than by chance. They also used a second test measure, the MSRS, in which the higher scores indicate more disability. As you can see a larger network effect size was associated with lower MSRS backing up their earlier findings.

  • So very interesting. Needs much more exploration to properly identify the Reasons for this phenomenon they observed. They leaped right into cardiovascular effects, cancer effects, early detection of disease progression, decreased disability. I think it’s much more complicated. Personally, I Don’t want to burden people closest to me, including some Doctors I have had. I distanced from them. I see their sadness, sympathy, sorrow at every loss. Reflecting my oh so gradual decline. Fear all around. Every day waking up and wondering what is broken today. Distant friends, mine are worldwide. It’s not just information we share, it is the misery, pain, frustration with an incurable Disease you really can’t describe properly to your closest loved ones. Early in my diagnosis I began corresponding with a woman in Holland. She was severed disabled and we had a group of bloggers. She was always encouraging and we never talked cardiovascular meds or cancer screening. She told us her day from what her husband made for supper and her personal care details we wanted to know. Even as a nurse of many years, it was all forgotten when I needed help. Even Close friends often don’t discuss Incontinence or not enough money to pay for meds and housing. But I can talk to a friend on the web about it and feel free to be honest.

  • It sounds as though the two groups were interacting only on matters MS-related, whereas the conclusions talk in broader terms of leisure. Is the suggested effectiveness based merely on group size, then? Neither do I understand how the differences between the average MS-state of each group has been analysed, despite reading it through a few times. As a non-statistician, the diagram is unintelligible to me. But if it is true that looser groups work better, surely this has to do with how beneficial it is for PWMS to enter into semi-formal communication opportunities. The contrast between making polite conversation, keeping one’s reserve, (possibly) dressing for an occasion, being attentive to others who don’t know you…. and the ‘let it all hang out ‘ intimacy of friends who have heard your jokes, know your MS inside out and with whom you need make no effort. Of course we need both but I’m sure that the former gets harder with the accrual of disability. So isn’t this just a repeat of the argument for benefits of social capital?? I would say so. The non-hospital interventions that have made all-round management a reality for me have been the result of exactly that. Chance conversations and meet-ups in social/non-medical settings led me to the following: hydrotherapy, nordic walking poles, aqua zumba, a brace that trebled my walking capacity and (years on) a compatible non-lacing, elegant shoe enabling me to rediscover dresses. Outcomes: walking holidays, fitness and a return to an interest in clothes. I find it quite scary a) just how randomly each of these came to happen and b) the life-changing difference they have made. I know they say you find your own luck, but I’m not so sure…

    • Hi Kay, I’ve provided a more detailed commentary on the analysis performed in answer to anon above.

      The authors comment in the discussion :”Although physical function may influence social dynamics, a negative effect of highly constrained networks on disability may also exist. Close-knit networks are often smaller, thereby limiting novel information flow and restricting individual autonomy, while potentially propagating stressful interactions and reinforcing unhealthy behaviors.”

      I believe this statement is unsubstantiated by their research as they have not established the directionality of the association (i.e. what leads to what), but it’s only the discussion.

  • Someone should figure out a way to data-mine the thriving MS social-media groups, Thousands of members rely on one another for support and post candidly about their suffering. Of course authenticity and various kinds of bias pose significant problems. But there’s a vast amount of patient experience out there, some of it about DMTs but most about symptoms, symptom management, family & caregiver friction, emotional turmoil and access to care. Organize these datasets and you could wind up changing the face of non-pharmacological MS therapy.

    • Difficult one, as I used to frequent a particular MS forum. Some people (pwMS) on it seemed to be insulting, gave their opinions as facts, were ungrateful for responses and it was at times very political. In the end I quit as it got nasty a few times but I understand some people are very unwell.

      I’m not sure I would trust data from these social groups. Like you say bias would be a problem.

    • How very true that is. I have had so many chance conversations which have guided me to somebody or something which has turned out to be key, as important in its way as the hospital treatment. But it’s a circular argument – if you’re so distressed and/or depressed by MS that you can’t face the contacts, nothing’s going to change. I suspect the PwMS worst affected by isolation will be those who can’t/don’t use internet, so are likely in an older age group. And when you think about it, there is so much necessary knowledge about this condition that is not strictly medical. We can only hope that MS nurses are not victims of health cuts and that they continue to promote sites like facebook and shift.ms

    • I’m sure google, MSN and Microsoft are constantly doing this. However, useful health research that’s a tough one. Some of the same voices may dominate and others may just happy to sit back and not interact. When there’s an a priori hypothesis it’s is best to go to group expert/non-expert and pitch it. You may not entirely get rid of the trolls but you’ll definitely lessen it!

  • There’s some very interesting literature out there on the social determinants of health and why having more groups (not just more social contact) is so beneficial. Even mere identification with a group helps. It’s a rapidly growing field of research with some interesting implications.

    The New Psychology of Health: unlocking the social cure by Haslam et al provides a good starting point if you’re interested.

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