Understanding Pediatric Youth: Chronicity
When talking about children with medical conditions, many of us specifically discuss children with "chronic" medical conditions. But what is chronic, versus what is acute, can be tricky to actually define. There have been a number of different suggestions in the past to help classify someone as having a chronic medical condition, but that may be missing the point. Instead, I suggest it's better to think about the symptoms a child has, rather than whether or not the condition is "chronic."
Even if we focus more on symptoms than condition, there is a need to understand what we mean when we describe them as "chronic." As I mentioned, different people in the past have suggested various cutoff points for how long something should last for it to be considered chronic (e.g., 3 months, 6 months). But does that fit with reality? In some cases it definitely does. In others, it's less clear. And even when something does generally fit that criteria, there may be special situations.
For example, let's think about someone who has diabetes. The condition is "chronic" in that it's always there. In addition, episodes of hyper- and hypoglycemia happen from time to time; they're temporary and episodic, but chronically something that occurs. Beyond that, someone can have extreme highs and lows (e.g., DKA) that are more acute. So is diabetes chronic? Yes, and no.
And ultimately, does it matter if we call it chronic or not? In my opinion, not really.
But capturing that experience can be difficult, as the example of diabetes shows. Add the fact that there are other aspects of medical conditions (e.g., pain, visibility, uncertainty), and you begin to see how labels don't do patients justice.
If we want to start moving towards broader understandings of medical conditions, including a more nuanced view of chronicity, we need to reconsider our definitions.
A broader definition
Instead of trying to figure out if something is chronic or not, it may be helpful to think about the specific patterns of each symptom a child has (to the extent possible; some symptoms are unclear). Similar to how we think about everything from a biopsychosocial approach, we also want to capture more of the subjective aspects of a condition, not just the concrete/objective.
Sure, that makes things more difficult in terms of research. We like to have clearly-defined information for analyses. But life is rarely as clearly-defined. So what we end up with is data that is stripped of some subjective information, and we need to figure out how it likely applies to reality.
Instead, we can find a happy middle ground. That way we can have clear definitions that better map onto reality. Those definitions just need to be more detailed and varied, rather than chronic vs. not.
For example, we can at least ask if there are any of three different types of symptoms present: chronic (e.g., physical disability), episodic (e.g., wheezing), acute (e.g., asthma attack). While still limited, it adds some more detail. We could even count how many different symptoms fit within each of those categories. Pair that with other information about symptoms and how they look in a person's real life, and we start to get a fuller picture.
Why it matters
The reason this is important is because it has implications for how we understand and assist children experiencing these different types of symptoms. That's because chronic symptoms can be predictable, yet a constant source of stress. On the other hand, acute symptoms can be unpredictable and lead to uncertainty even if they aren't direct sources of constant stress.
That means that a child (and their family) can have a complex profile of psychosocial stressors/symptoms related to different aspects of their medical conditions. And right now, our research doesn't necessarily reflect this fact. At best, we have some comparisons of different medical conditions which have "typical" presentations, but that doesn't get down to the detailed level of being able to help an individual. When atypical presentations and comorbidity are common, studying only stereotypical presentations makes it difficult for us to generalize our information and better inform our care.
And really, this type of research is important. I wish there was more research I could reference here that's really looking at things in this way, but it seems to be pretty lacking. That's why my long-term goal is to study aspects of medical conditions in this type of way.
"Chronicity" is not only difficult to define, but what we know about it is limited in scope and utility in clinical practice. Yet the chronicity (and other aspects) of symptoms plays an important role in the experience of people with medical conditions. When every patient is unique and has their own mix of symptoms and complications, we need research that can help us better navigate these nuances.
Do you have a "chronic" medical condition? What has your experience been like with your symptoms? Are there aspects of your day-to-day experience with your condition that you don't feel are addressed by your care team? Let me know in the comments! All comments on this site can be anonymous.