Are you feeling more Crohn’s disease fatigue today than you were a week ago?
Measuring fatigue is difficult. It can be hard to tell if you are feeling fatigued because of Crohn’s disease, a different condition, or lack of sleep. And those concerns only address fatigue that is felt in the moment. What do you say when a doctor asks you, “Have you been feeling fatigued over the last two weeks?” 🤔🤔❓
Trying to remember and compare your fatigue level presents two problems:
- Recall bias; and
- A failure to properly recall events because memories are constantly being manipulated by the brain such that recall doesn’t accurately reflect true occurrences or mental states
- Negativity bias
- The finding that negative emotions and thoughts carry more weight and may be more easy to remember than neutral or positive ones
Both clinicians and researchers work to eliminate these issues when recording information over time. One of the ways to do this is by quantifying otherwise difficult-to-measure concepts, like fatigue or pain. One of the ways you have probably seen to better measure pain is the Wong-Baker FACES foundation.
This scale allows for measures of pain to be recorded in a quantifiable way in a given instant. That means you could look back in time and say: “On March 12th, I was feeling a level 4 pain.” Then, in two weeks or two years, it will still be clear to you or a clinical what your past pain level was. This is a necessity for research and it reduces the two biases above by reducing the amount of reflection you need to do to consider your current symptoms.
The Fatigue Severity Scale (FSS) was built by researchers to provide a similar level of consistency over time, but for fatigue. The scale makes it easy to measure fatigue and attribute it to Crohn’s disease — and can be taken as often as desired to measure changes in fatigue.
For the easiest way to take the FSS, check out the Crohn’s Corner Facebook Messenger bot. So far, over 360 people with Crohn’s have taken the FSS to measure their fatigue.
The Fatigue Severity Scale in Crohn’s research
Use of the FSS in research is common, and a 2015 study by Grimstad, et. al, used to it to measure fatigue levels for people with newly diagnosed ulcerative colitis (UC) and Crohn’s disease (CD). The researchers found that both UC and CD participants experienced significantly more fatigue than healthy controls. The box and whisker plot below shows the considerably higher median fatigue score.
Crohn’s Corner Fatigue Severity Scale Data
For comparison’s sake, we created the same box and whisker plot from the 360 responses received to-date at Crohn’s Corner. The edges of the boxes highlight the quartiles, with the line between the boxes being the median. It shows where the majority of the responses fell. The whiskers show variability outside of the upper and lower quartiles.
Average score: 5.67 / 7
Median score: 5.89 / 7
Minimum = 1
Q1 = 5.11
Median = 5.89
Q3 = 6.56
Maximum = 7
Q1 – Minimum = 4.11
Median – Q1 = 0.78
Q3 – Median = 0.67
Maximum – Q3 = 0.44
Analyzing the Crohn’s Corner FSS Data
Based on the data above, it seems like the Crohn’s Corner participants are experiencing a very high level of fatigue. As compared to the study above, the median fatigue felt by the community is higher. Additionally, based on the lower error bars, there were considerably fewer low-fatigue final scores from the Crohn’s Corner pool than in the clinical study.
This may be possible because the FSS attracted people feeling particularly high levels of fatigue as opposed to a those in the clinical trial. This is a self-selection bias, where those experiencing fatigue choose to participate, leading to high scores that may not be truly reflective of the Crohn’s disease population writ large.
The best things to do? Keep tracking fatigue – even when if you aren’t feeling fatigued at the moment. That way, you can use other trending and tracking tools to identify triggers. And if tracking fatigue can help you identify a negative trigger, it may save you loads of fatigue in the future!