I stumbled on this video in my Twitter timeline. Hear the legend speak!
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?
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.
Over the past few months, I have been exploring Telegram chat application over the choice of other options that have flooded the cyberspace. Telegram embodies the best prospects of all in one neat package. It’s apparent that its closest competitor WhatsApp is the most commonly used app on the planet, but it comes with several limitations. The chief amongst them is constant surveillance by Facebook which makes it impossible to be “private” even though; it may have end to end encryption. I won’t go into details here but suffice to say that Telegram offers a much better option to interact.
One of its redeeming features is channel and hashtag search. Channels are uni-directional flows for information. It means that users can read it but not reply to it. Subscribers can be directed to chat groups to discuss any pertinent issue. Since the channels have unlimited members, Telegram offers a perfect scalable option for that. The exciting bit is hashtag function which, for me, was quite serendipitous. The posts come tagged automatically like #events #charity (pushed by different brain tumour charities), #updates and my favourite #motivation (posters with quotes). I can also add reminders for various websites/ events over a recurring interval.
A Telegram group works like any other chat application but with distinct advantages. It can have multiple administrators (to moderate discussions over different time zones), users can also add hashtags to search (or do a global search for anything discussed), access to all previous messages for new members, mute notifications and notification alert only if their username is tagged in replies. I prefer anonymity and privacy in social networks. Twitter may serve as an excellent platform but is not altruistic- it logs and tracks every user. Further, it has a severe limitation of characters which does not address individual queries effectively.
The idea behind is to consolidate everything in one application. The telegram app is accessible via desktops and multiple platforms (including a web browser) which doesn’t constrain users from one locked in place. Phone numbers aren’t required to join a group or channel. They just need to do a global search via public username; here in this case “cnssm” (without quotes).
Another distinct advantage is an amplification of social media messages. We are drowned in by mobile notifications and Telegram offers granular control over what gets your attention. Much of what I do on Telegram is automated which makes things easier to manage.
I hope that most charities would consider this platform- its fast, quick, private, secure, scalable; indeed, everything that’s required to keep privacy intact. Once the channel grows, I plan to introduce video messages; a quick blurb on what patients need to do and focus on; have a separate group for professionals to share best practises and files. Ideally, we could have a rehabilitation specialist, a dietician and social workers. Charities should also keep a token presence here to identify users and guide them efficiently for financial issues.