Why the Pain Scale Is Inadequate in Capturing Sickle Cell Pain Crisis

What if your pain was so severe that you couldn’t put it into words?

Recently, our team has been talking with sickle cell patients and caregivers to improve our platform to better support their needs.  From these conversations, and reviewing the available (limited) research literature, we are learning about pain crisis in sickle cell disease. This knowledge is informing pain tracking on our platform and emphasizing how traditional clinical methods of capturing pain are inadequate for understanding the full patient experience.

You know what I’m talking about - the pain scale. On a scale of 1 to 10, how is your pain today? The scale seems simple enough from a clinical standpoint, but what does it actually mean for patients? And even more complex, how does a caregiver use it for a loved one who lives with chronic and acute pain?

If you live with daily pain you likely have different internal interpretations of pain that don’t follow the norms of traditional pain scales.

For example, an individual without a chronic condition might express 5/10 pain following an injury. However, if you’re a sickle cell patient who lives with a baseline pain of  5/10 every day, you might internally call that 5/10 level of pain a 0/10 as compared to your more acute experiences with pain that are off the charts. You probably feel that a pain crisis is far above a 10/10 so the traditional pain scale doesn’t even come close to communicating or explaining your experience. 

This is even more complex if you are a caregiver for someone with chronic and acute pain. Research shows that some children diminish their real pain in order to ease their caregivers’ stress. (Reference available here.) Your child may experience a 7/10 pain but only communicate a 3/10 for fear their pain will cause you distress as their caregiver. So with pain scale limitations, how can we capture a more accurate understanding of pain in individuals who experience both chronic and acute episodes on a consistent basis? How do we address these challenges in order to provide the care needed?

We need an individualized approach to pain data.

At Folia, we are focused on helping patients and caregivers track and visualize data that expresses their everyday lived experience with rare and complex disease.. Our goal is to give you the tools to track your individual changes in pain over time and to identify triggers and trends. We want you to track the items that you find important, which is why our platform is highly customizable. For example, you might want to see how your pain is impacted by new treatments or lifestyle changes, such as diet or hydration.

Recognizing that the experience of pain is incredibly relative and individual, clinicians and researchers need to see granular changes in an individual’s experience over time. A customized tracking approach can serve as a foundation for rethinking how pain information is shared back with the care team and inform research that actually measures what is important to patients.

Patients and caregivers, we would love to hear from you in the comments below: 

What are ways you've found effective in measuring and talking with your care team about pain?

And if you are a sickle cell patient or caregiver looking for info about tracking with Folia, click here.