As with many things, time and experience allows for a better understanding of more complex entities, chief among them are medical studies with a language all their own. Over the years, I’ve learned that not even medical studies are immune to poor scientific construction, physician bias, poor education and assumptions. Increasingly, these studies offer poor comparative data and incomplete, equitable analysis. This, alongside attractive and misleading headlines within medical news reporting, makes for a rapid spread of information online without healthy accountability.
This makes me very mad as both patient and advocate, because the information is many times a segway to crucial decision making for patients facing difficult medical situations and attempting to weigh the outcomes of these decisions.
Thymectomy for a long term treatment with MG has long been considered controversial with physicians and riddled with inadequate studies and poor data. This leaves the patients with a lot of questions and too few good answers.
The latest issue that reflects ongoing medical reporting buffoonery involves comparing newer thymectomy techniques and comes with a catchy headline “Complete MG Remission Seen as More Likely in Robot-assisted Thymectomy”.
Sounds like amazing news! Until you actually read the study and summation.
1.) The author takes the time to discuss in a rather disparaging way, the longest standing thymectomy surgical technique and also the most controversial, trans-sternal thymectomy where they access the patient through the sternum bone. It sounds scary and as a post trans-sternal patient myself, I can tell you it is no simple thing! But I can also tell you that this approach has it’s strong benefits both during surgery and in the long term that is often ignored or skewed in reporting. The author here focuses on the negative potentials of trans-sternal without balancing it out with the positives and doesn’t offer comparative analysis for surgical visualization, doesn’t detail the inherent risks that lower visibility can bring with the newer approaches, doesn’t offer information about how complex Thymectomy really is and how this original method allows for the best field of vision for the surgeon – good news for the patient should their thymus have complex features or entanglements inside that they couldn’t predict – and they didn’t take the time to offer numbers to compare relapse and remission rates so that the reader could understand what the risks are long term in light of the new study.
The focus was decidedly negative and wholly incomplete. There was no reason or value for the author to bring this surgical approach up as it is not analyzed or referenced in the actual study, offering bias and lazy comparisons for an article attempting to help the reader understand more about Thymectomy.
2.) The author then spends the rest of the time discussing two other surgical procedures that were actually studied and compared by researchers, hi lighting the rate of blood loss and hospital stay comparisons, this time offering general but very limited data.
Never again does the author compare the trans-sternal, in spite of it’s multitude of studies and history of being used for more than 5 decades in MG. This makes the title article decidedly false, mostly by omission but also through inference of fully exhaustive comparisons. The inference that robotics offers the best remission outcomes without stating something like: when compared to VATS Thymectomy, it allows ambiguity and omission to lead to a conclusion that is hyped and murky.
The author never bothers to correct this even in their conclusion in spite of apparent awareness early on that other methods are used and influence patient choice and clinical outcomes. I take great issue with this type of journalism, especially with medical news.
3.) The author goes on to define “complete remission” as being symptom free for at least a year and off mestinon (pyridostigmine bromide). This is not accurate. Complete remission is a patient with no symptoms for at least one year and off all medication. Otherwise, the patient would be considered stable and under pharmaceutical remission, a very different animal.
4.) The author then briefly acknowledges the researcher’s admission of poor comparative data between the VATS and RATS procedure. “Another potential source of bias, they added, might stem from the unequal follow-up period between the two groups. Those who had RATS were followed for a median of 5 years, whereas those who had VATS were monitored for a median of 12 years, allowing for an increased possibility of relapse.”
That’s a huge difference!!! And it matters incredibly so when you are talking about remission and relapse! The researchers have no idea what occurs past the median time of 5 years as it relates to remission or relapse with robotics, yet both the author and the researchers feel comfortable still make so grand a conclusion!
The researchers persist that “RATS allows for greater precision and more successful removal of the thymus than does VATS.”
Precision due to delicate and refined tools of a machine instead of a human hand, does not always equate to a better or more successful choice, even though precise cutting is likely increased with this technique, it doesn’t account for field of visualization or any complicating factor that they cannot predict beforehand including enlarged thymus glands, horns on the gland, a gland that is pressing on or wrapped around phrenic nerves (what allows us to breathe), the heart, lungs and so much more.
Additionally, this comparison is unequivocal and it’s scientific premise is faulty. By what standard are they defining more successful? Their success is studied only in short term with multiple other conditions for success. They focus mostly on remission based on their shorter post operative observations but fail to gather data on long term relapse rates, a strong key in assessing true success. Relapse rates should be studied and compared to in equal measure of remission rates and length of follow up.
If RATS has a fairly equitable or advantageous outcome at the 5 year mark but is found to have a higher relapse rate at the 10 or 12 year mark compared to VATS or trans-sternal, that makes it a less successful approach and a risk a patient should be made fully aware of when making their surgical choices.
Relapse is just as important, if not more critical an analysis to be made when considering thymectomy choices than initial remission rates in early follow ups. A patient may wish to choose a surgical approach that has less initial pain and less time in the hospital, because that sounds great and honestly, who wouldn’t? But if that patient knew their chances for remission were extremely restricted to dependency on age and previous remission and/or might have a stronger chance of the disease coming back, the short term look of less pain might not look as appealing.
Additionally, it is not detailed the populace studied, which would give a better understanding of other cofactors that may also be involved besides age of onset and subsequent date of surgery after onset. For example, all the same subtype of patients (achr positive or seronegative), patients with similar treatment regimens i.e., controlled on mestinon and steroids, similar age groups, disease onset etc… Not only would this be considered a better scientific foundation to build upon, it also gives context to what is being studied and if the success or failure is truly due to the proposed solution. Without this information, we are left to wonder if other factors besides technique had influence in the outcomes.
Their acknowledgement that “patients who were younger, and/or had entered into remission before surgery, had higher chances of a complete remission at follow-up” is concerning. Younger is not well defined here and significantly limits the available population as the average onset for women is their 2nd and 3rd decade of life and the 4th and 5th decade for men. Previous disease remission is also an odd cofactor to have in the mix to make a contingency in success rates. It would mean these patients are more likely to have had sporadic, short term remissions on their own, apart from surgery, muddying the waters as to the true source of success in these thymectomy cases.
The researchers also fail to note that age and surgery within a certain time limitation of disease onset is true and well studied with trans-sternal thymectomy as well. This doesn’t seem to change regardless of surgical approach. Age matters in greater chances of success across the board but it doesn’t mean there won’t be success without it as well and is not unique to RATS or VATS Thymectomy.
And I’m decidedly sad that a research team felt that they needed to note skill set also likely lends a hand in better recovery and remission rates. That’s a no brainer, folks. This goes for all surgeries and procedure outcomes.
To be fair to the reporting author, the study was poorly done when looking at their final data and conclusions, giving an illusion of success that may not be merited and certainly leaves a lot of questions.
However, the onus is still on the reporter for creating hype and overall untrue headlines to draw clicks while also offering sloppy medical reporting and failing to ask important questions in their analysis.
The headline is deeply misleading and frankly, irritating. Patients face major decisions and fear looking at whether or not to move forward with a thymectomy and headlines/articles like these do not help the physicians or patients make the best choices.
Equally or perhaps more concerning is the study itself. The study relies heavily on drastically shortened follow up times by cutting the long term assessment by more than 50%! How can their conclusion be that it holds an edge in complete remission when their compared follow ups weren’t comparable?!
It also seems to require a young age and previous remission (although they don’t state if it is short term, sporadic remission or pharmaceutical remission) as strong cohorts in favorable remission outcomes! This very much matters when looking at surgical success. Is the surgery successful due to technique and method or because of outside cofactors that influence that outcome? Without a control group, we don’t know the answer to that.
It also fails to be exhaustive since it is only compared to one other surgical type and doesn’t offer a well established control group to possibly compare the same subtype of studied patients who chose no thymectomy. While their intent was and is to study and compare only two surgical types, it leaves the patient without a full picture to understand all of their surgical choices and risks with newly studied comparative data. Researchers and surgeons often cite the reduced recovery time and peri surgical risks as obvious reasons to chose VATS or RATS, but doesn’t ask the question if it is best choice for the long term and this study also fails to ask that question as well. If a patient had a choice to deal with a potentially harder recovery for a short time with a better long term guarantee, that needs to be part of the discussion.
This is not the first time studies have been published and even lauded that were poorly done, failed to analyze crucial cofactors, study and include contextual, critical information and other important clinically important criteria, but it’s publication begs for discerning scrutiny that it seems isn’t readily coming from their peers or from news sites.
Frankly, MG patients deserve better.
Please don’t assume that a surgeon will read this and understand the issues that persist with in it. Have a conversation and ask what they feel is important to consider in these situations and see if what they hold of value is what you do.
Below is the link to the aforementioned study and article so you can check it out for yourself and see if you agree or disagree with my concerns.
Author: Rebekah Dorr
Director of Patient Advocacy: MG Hope Foundation