Wait...I have CLL! Whaaaaaaaaaat!

A health scare earlier in the year made me reflect upon the inadequacy of medical literacy in today’s world and form perspectives on the journey patients take to understand more on their (current or potential) disease state.

Earlier this year, in August, I underwent a comprehensive battery of tests as part of my checkup for diabetes.

“Your test results are available”. A notification popped up on my mobile. I immediately opened my healthcare network’s patient app and started going through the results.

Everything looked great. My A1C levels had dropped to the pre-diabetes state despite no medications for over a year. I was ready to gloat about it with my PCP during the next visit.

However, a something on one of the test result (CBC W-Differential) caught my eye.

Figure 1. CBC W Differential Test Result

My Neutrophil count (%) was slightly lower than the range while my Lymphocyte count (%) seemed higher than the range.I was curious. What could it mean?

So I did what anybody else would do. I googled

Figure 2 - Googling for the observation

The dreaded word “Cancer” shows up. I felt a tinge go up my spine

Interestingly Quora as a source appeared higher in the search result than credible sources like Mayo Clinic. I expected branded or unbranded websites for the disease states associated with the symptom to show up first.

Nevertheless, I went to Quora and the messages there indicated that it could indicate a viral infection

Figure 3 - Quora Results

I was feeling perfectly healthy, so ruled out any viral infection. None of the other links were helpful or provided any other explanation.

I was counting on google to give me the right ads based on my search query. But technology never works when you want it to.

My subsequent deep dives were on Mayo Clinic, Cancer.org websites but I was getting a bunch of different messages ranging from auto immune diseases to cancer (cll) to viral infections.

One thing that came out was that in addition to the percentages of the lymphocytes and neutrophils, it was also important to look at their absolute values. However, this fact was not mentioned consistently across all websites.

By the time it was evening, I had the unnerving thought that I could have CLL (Chronic Lymphocytic Leukemia).

It was my wife’s birthday and all I could think about during our time out was CLL. Needless to say the next couple of hours and the night were extremely stressful. I couldn’t worry my family without having confirmed it with the doctor first.

I met the doctor next day and all she wanted to talk about was diabetes and the fact that I had stopped my medications.

Before we wrapped up our conversation, I bought up the CBC Differential results and she just waived her hand and said everything is OK. You shouldn’t worry.

And that was it. My imaginary CLL went up in smoke. Big relief.

As I thought about my experience and supposed predicament, I felt that my experience was indicative of how other patients search for information as well and the dilemmas they face while being swamped with incomplete and incomprehensible information.

To summarize,

1. It is extremely easy to find information about anything (disease state) on the internet. However, it is also extremely hard to find the right information given the number of links that show up of websites from US, UK, NZ etc.

2. Not all websites have all the right information. The content is not geared towards informing the general public well in terms of depth, ease of explanation and context

3.The digital experience that healthcare organizations provide is different across web and mobile platforms. While I could see both the % and absolute values of my CBC test on the website (laptop), I could only get the % values in the mobile app as well as the website (opened on the app)

As healthcare and pharmaceutical organizations drive towards being more patient centric, they should also invest in making sure that patients get the right information and advice from trusted sources. There’s a lot that could be done for driving medical literacy for patients.