What are the harms of an early diagnosis of MS? #ClinicSpeak #MSBlog
My recent post on the need for an earlier diagnosis of MS and the criticism of our ‘Brain Health: Time Matters‘ policy document generated some useful comments. Maybe the criticism is justified.
In last week’s BMJ there is an analysis on the literature of the push for early detection of disease. The author’s make the point that the literature is biased and tends to stress the potential benefits of early diagnosis and rarely focus on the potential harms.
What are the harms associated with an earlier diagnosis of MS? Could a MS diagnosis in pwMS, who in the past would never have previously been diagnosed with MS, cause harm? One could argue that people destined to have benign MS may never need to know about their diagnosis. May be the practice of some neurologists not to inform their patients with CIS (clinically isolated syndromes) about the link with MS is correct. What do you think?
May be we are wrong to assume that earlier diagnosis and earlier intervention is the best course of action in MS? May be sacrificing some brain reserve is a small price to pay for the anxiety generated by knowing you have MS? Not having a diagnosis of MS for an average of 8 years may in fact be a good thing and separate out the pwMS who need treatment from those who don’t?
Maybe by extrapolating the data on the benefits of early access to DMTs, compared to subjects who have delayed access to treatments, from clinical trials has resulted in a distorted view of MS outcomes? What do you think?
Do we need a definitive study to better define the harms associated with diagnosing MS earlier? Or do you think the evidence for treating MS actively and early, to protect brain reserve and long-term outcomes, are sufficient to make a strong case for our policy proposal to improve early MS diagnosis rates?
Summary and recommendations:
A surge has occurred in publications about the early detection of diseases and in the proportion of articles discussing its benefits. It is also unbalanced, with twice as many articles mentioning the benefits of early detection as mentioning the harms. The surge seems to result from hype and unwarranted optimism, as mortality rates have not fallen.
In the past five years the ratio of articles discussing only benefits compared to those discussing only harms appears to have stabilised while the number of articles discussing both benefits and harms has increased. Hence, the bias of benefits may be diminishing, as the awareness of harms of early detection is rising. Still only every 76th article on early detection, however, refers to both benefits and harms. Thus, the early detection surge is still big and biased and should be balanced.
We need critical thinking and more studies that specifically target both the benefits and harms of early detection. We need initiatives for systematic monitoring of a wider set of benefits and harms of early detection technologies. We need better critical assessment of early detection strategies in clinical practice, in research funding, and in publication to avoid the persisting bias that early detection is only beneficial.
….. The opportunity to discover disease in its early development, potentially enabling reductions in morbidity and mortality, has been an incentive for doctors, and, if missed, a source of blame and litigation….
….. Since then, early detection of disease has gained considerable attention worldwide, especially in health checks and screening programmes. Improved diagnostic technology, innovations in biomarkers, 456 new m-health applications, and “P4 medicine” (predictive, preventive, personalised, and participatory) have increased this attention. The number of articles on early detection has increased exponentially since the 1970s, and most of these articles have the same message: early detection is a good thing…..
…… More recently, however, this presumption has been challenged. Several types of early detection have been criticised for being ineffective, futile, or even harmful. The same goes for health checks. The presupposed benefits of early detection can lead to aggressive interventions, the benefits of which are uncertain at best. Early detection can make people ill when it causes “shifts in the perceived severity of the disease, with ripple effects on how people experience and understand their illness and risk of disease.” Thus, the potential harms of early detection have also gained attention…..
……. The results of our study indicate that we are witnessing a rise in papers on early detection that is analogous to a storm surge—the onshore gush of water associated with a low pressure weather system. The severity of surges depends on the shallowness of the water body and the timing of the tides……
…… As with storm surges, we need surveillance and advanced systems for early warning. The imbalance between the number of articles on benefits and harms implies that the advantages of early detection of disease are taken for granted while reflections on harms are lagging behind. Whether the magnitude of the surge is related to the shallowness or bias of our reflection on the implications of early detection or on tides of enthusiasm in diagnostics is open to debate, as the downsides of early detection seem to have been ignored…..
…… The damage of the surge is unknown. We do not fully know the benefits and harms of early detection, in terms of lives saved and avoided suffering, increased health anxiety, more disease (overdiagnosis, medicalisation), and unnecessary and harmful treatment. The increased vigilance against pre-diseases might also change the way we perceive life itself, slowly transforming life into what can be characterised as pre-death. Continued ignorance about its magnitude is no longer an option. Systematic and continuous monitoring is the logical next step, as with other acknowledged side effects of healthcare……
…… Is the early detection surge hype? …..
…… Reductions in mortality for several diseases have not been attributed to early detection. Moreover, the incidence of several diseases that tend to be detected early is increasing with no corresponding reductions in mortality rate. The harms of early detection are extensively reported. Hence, the surge in attention on early detection and the focus on benefits over harms do not seem justified. Even articles that discuss both benefits and harms mention benefits more often in the abstracts. …..
…. Another important point is that we have only noted the number of articles on benefits and harms and not the quality of how harms and benefits are tackled. Studies of cancer screening indicate that harms may be under investigated or under-reported, despite the trials mentioning the word harms as a search term or a free text in titles or abstracts. Quality assessment of the numerous studies we identified is beyond the scope of our study, but our sample analysis indicates that the imbalance between benefits and harms in the literature may be more severe than we report (see supplement 2 in the appendix). This underlines the need for further in-depth analysis of the literature…..
….. We have only discussed early detection in relation to reduced mortality. Clearly, early detection might have other effects, such as reduced morbidity, increased quality of life, or reduced health anxiety. We acknowledge this and encourage further studies.
7 thoughts on “#ClinicSpeak & #BrainHealth: do we really need to push for an earlier diagnosis of MS?”
Do GP's know enough about MS? I would say generally not enough. This was where my problem was, the GP assumed my symptoms were benign, so I wasn't referred to the hospital. What can be done to improve this?
my partner's ms clinic fobbed off her reaction to tysabri for 2 weeks, instead of dealing with it. i get the feeling knowledge is sometimes not the problem: treating ms patients as people worthy of a doc's time and effort might be part of the issue.
ps. lucky oncologists hey – there are discussions about over diagnosis in their world a lot. but when ya patients live or die – when there are only 2 possible outcomes – the decisions seem simpler.when you are left to rot in progressing disability that takes all your functions away, one by one – it's easier to put you in some dark corner and ignore the reality because doctors are not ones living with. this is completely unfair to the authors of this blog, to the two (of 8) neuros i've come across who display genuine care and interest and engage in discussion. unfortunately, in my experience those neuros are the exception not the norm. i'm not calling your colleagues cold hearted monsters.but i do wonder if some of your colleagues are too stuck in the life of academia and the clinical practice is something they do on the side.
Perhaps you need more science.What do you do in the absence of science for which you are clearly not personally responsible (nor are your colleagues)?Give the patient the pros and cons of the debate and allow patients who want to make decisions to make them. For those who don't, offer a recommendation together with the warning that your colleague next door may have a different opinion. Only then can the patient really decide whether they trust docs and want to stick with the recommendation or whether they want to be more aggressive.Debating it behind the closed doors helps no one (cept preserve the status quo).Obviously, in the context of what I have just said, a continuing thank you for this blog and the effort that goes in it.
I think it depends on what you do, and you also need to put the case of the general population verses the individual. Whilst the general population do one thing there may be individuals that do not fare the same.We also been to dissociate the influence of CRAB drugs verses the highly effectives.For those that dont…make a recommendation but that depends on who you see
MS wasn't mentioned to me for 30 years and I'm SO pleased. I obviously had benign MS and have SP now – 20 years after diagnosis, still (just) walking, with the other, usual complications too. But, still very pleased I wasn't told as my life would have been so different.
And until they stop defining benign according to increasingly limited (and pretty useless) EDSS….. and by the way, benign here doesn't mean no symptoms or effects.My health, my body, my well-being, and I want to be part of the discussion.