Inbox Zero: Fastmail for academics.

Who wants this?

It is simple.

Sign up for Fastmail.

Have a custom domain, if you want. Or else, existing domains offered by Fastmail work fine.

Have an alias for each website. For example, if you order pizzas, have one for that. For a travel website, have another. The trick is NOT to give out your actual email id but give the alias for that particular site.

This is how it plays out. Go to dominos and have an alias like dominos@fastmail.com (or whatever domain you want). It will immediately segregate your email. If you are spammed for that domain, it is a matter of deleting that alias. Simple. Quick. Painless.

I have folders for all incoming mail, and Fastmail allows setting up rules to sort them out automatically. For example, if I have a newsletter subscription, it is set to flow in that folder and marked as read. Or anything else that I wish to read later.

Achieve that today!

Quality of life in brain tumours

This issue is very thorny one in the neuro-oncology community. How do you measure the quality of life objectively?

A RANO working group has defined that outline and is aware of it. We, as radiation oncologists, aren’t oblivious to the fact that radiation therapy offers one single shot to give the maximum chance of cure. I am not discussing the issue of re-irradiation here, but the idea is to minimise the impact of existing delivery mechanisms.

Beyond the tumour volumes (2-3 cm for high-grade gliomas), this is both empirical and observational. They observed that bulk of failures happened in the high dose region. It brings us to two important questions here.

1) If we know that it is going to happen in the 95% isodose, why don’t we focus on intentional dose heterogeneity, at the expense of conformity? We could explore mathematical formulations for it- how best to predict which dose fractionation would be best suitable for the likely outcomes, where the failure is expected to take place and escalate the dose to that region.

2) Some tumours usually fail elsewhere, outside the treatment area. If this is the case, why not “lower” the dose to the treatment area (so-called “de-escalation”)?

Do you see the immediate impact?

Lower the total dose to the normal brain!

Now, that leads us to two more questions.

1) Why don’t we lower the dose to 55+Gy for Grade III tumours, because they have a better outcome?

2) Does Temozolomide also act as a radiation sensitiser?

The problems with these very broad-based assumptions are that we do not have a robust criterion for pre-operative or even intra-operative validation of tumour subsets by use of MR spectroscopy or perfusion (or use of any other metabolites, for that matter). Likewise, after intense scrutiny and numerous workshops, we have just been able to define the glioblastomas/grade III astrocytomas along with the molecular data (or even other variants) objectively. Previously, palisading necrosis was all that we had from my pathology colleagues. Now, we are wading in molecular soup, and no one has the complete picture of how things can be nailed!

However, use of these molecular methods isn’t widespread.

One way out is to sequence the tumours completely, follow up patients standard course fractionation and prospectively identify patterns of failure.

It would be akin to a very preliminary “precision medicine” and not the hype cycle that seeks to identify the “molecular targets”.

No, we don’t need more “research” on something that is being duplicated across the labs. But we need to be able to channelise something that we have learned.

Who is going to bell the cat?

I think, currently, we are just trying to identify who the cat is.

RANO: Working plan for the use of patient-reported outcome measures in adults with brain tumours

Lancet Oncology, 19 (2018) e173-e180. doi:10.1016/S1470-2045(18)30004-4

Why is this paper important?

It is because there are no reliable means of patient-reported outcomes (PRO). These metrics are an essential part of monitoring the course of treatment as well as quantifying the impact of the same. For years, we have been relying on metrics like Mini-Mental State Examination. I have found that examination to be sorely limited because it is full of biases and highly dependent on the cognition/mood status of patients. There has to be a more robust metric.

Hence, the great blurb from this paper:

The first step would be to provide an overview of the guidelines of previous initiatives on the collection, analysis, interpretation, and reporting of PRO data

It is the step in the right direction because of it an acknowledgement of what we don’t know. I have attempted to involve formal psychometric testing, but it usually takes hours and have limited clinical utility. The existing tests have undergone validation in different “trials” (most of which are either single author led studies or institutional trials) leading to much confusion. Do we have a standard way of reporting them?

Not yet.

It leads us to the second step.

The second step would be to identify what PRO measures have been applied in brain tumour studies so far. As mentioned, several PRO measures are already used frequently (e.g., MD Anderson Symptom Inventory Brain Tumor Module, Functional Assessment of Cancer Treatment-Br, EORTC Quality of Life Questionnaire C30 and BN20, and the Barthel Index)

Content validity should also be culturally sensitive. What applies in one geography doesn’t translate in another part of the world (which adds to the complexity of the task).

Therefore, I feel that the third step is the most crucial question in patient-reported outcomes.

The third step would be to establish the content validity of the existing PRO measures identified in the second step. Are all essential aspects of functioning and health for patients with brain tumours covered by these instruments?

The next excerpt nails this in the right direction. It is not the patient defined outcomes alone but has to be validated by physician scoring system as well.

How is this going to shape up?

This framework refers to a patient’s functioning at three distinct levels. The most basic level is a patient’s impairment in body function, such as muscle weakness. Assessment of these impairments can be done with PRO measures, such as a symptom questionnaire, but also with clinician-reported outcome measures such as a neurological examination

Last but not the least is the psychometric properties-it has to prove its reliability as well! This, of course, applies to reproducibility across different domains.

The fourth step is to identify the psychometric properties of the detected PRO measures. How valid and reliable are these instruments for patients with brain tumours

To achieve this goal, the committee proposes to use COSMIN taxonomy and defines it as such:

The COSMIN taxonomy distinguishes three quality domains: reliability, validity, and responsiveness, each of which includes one or more measurement properties. Reliability refers to the degree in which the measurement is without measurement error, whereas validity refers to the degree in which an instrument truly measures the construct intended to measure. Responsiveness refers to the ability of an instrument to detect (clinically relevant) changes over time.

These criteria will help to shape up the course of treatment beyond the survival outcomes and focus on preservation of quality of life.

More on that later.

Social Media: Falsehoods

I was alarmed to read about falsehoods about health spreading through WhatsApp. It is a Facebook-owned application which has millions of users worldwide. It is impossible to get the actual numbers but suffice to say that it is prevalent in emerging economies.

The alarm went off with an excellent article from The Wired which has chronicled the rise in Yellow Fever epidemic in Brazil and the falsehoods surrounding the vaccination. I reproduce some essential bits here.

In recent weeks, rumours of fatal vaccine reactions, mercury preservatives, and government conspiracies have surfaced with alarming speed on the Facebook-owned encrypted messaging service, which is used by 120 million of Brazil’s roughly 200 million residents. The platform has long incubated and proliferated fake news, in Brazil in particular.

The phenomenon of fake news isn’t peculiar to Brazil, but these spread rapidly through the social networks.

“These videos are very sophisticated, with good editing, testimonials from experts, and personal experiences,” Sacramento says. It’s the same journalistic format people see on TV, so it bears the shape of truth. And when people share these videos or news stories within their social networks as personal messages, it changes the calculus of trust.

If you wish to have a scientific basis to why this happens, Science published a great resource.

We classified news as true or false using information from six independent fact-checking organisations that exhibited 95 to 98% agreement on the classifications. Falsehood diffused significantly farther, faster, deeper, and more broadly than the truth in all categories of information, and the effects were more pronounced for false political news than for false news about terrorism, natural disasters, science, urban legends, or financial information. We found that false news was more novel than true news, which suggests that people were more likely to share novel information.

This is an example of a rumour cascade:

The purpose of this post is that physicians should step up their game and have an active social media presence. A lot of sane voices will go a long way to dispel myths and fears about public health initiatives.

That is the reason why I set up Telegram channel to have physician vetted information and a one-stop solution for brain tumour affected patients. We owe people more!

Why blogging is essential

When you face an empty sheet, the hardest part is to define the direction you want to give to your words.

This post was in response to a brilliant blog post on 33charts, which is peddled by an influential paediatrician. I love the way he wraps up his ideas which is both a joy and a delight to read.

I have flirted and experimented with blogging consistently over the past few years (a decade or more). I am aware of how the blogging landscape evolved.

This neuroblog was set up later in response to many recommendations by those who had been there. Blogging is the best way to be able to get your ideas out. It showcases what is on your mind.

If you are clear in your mind, you can set out to do what you wish to achieve. Hence, this blogging platform is essential to categorise as well as firm up the opinion.

Twitter is sorely limited to express both the nuance as well as context. A blogging platform only explains the background, but spoken word or personal interactions best explain nuance.

Each one of these leads to a more vibrant diversity of opinion.

(Images are subject to copyright of their owners)

Targeting Cancer

2018-03-10 16.03.54

I am pleased to be associated with Targeting Cancer team. I slowly became aware of the team in my Twitter timeline. I loved the infectious positivity as the innovative ways they got out to spread the word.

It was natural that I reached out to the team and a quick flurry of emails led me to exchange (and permission) to use their logo.

I have started using it in my public talks. I also got a cup printed out and took a selfie with it!

It was tweeted out today.

You can read more about Targeting Cancer here.

Here’s Dr Sandra Turner speaking about Radiation Therapy: