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Think back to the person you were in your teens. Can you recall what you thought your life would look like at the age you are now? How about when you were in your 20s? Your 30s?
Think about your life with T1D
Chances are your life is probably — at least in some ways — different than how you imagined it could be when you were younger.
When it comes to type 1 diabetes (T1D), we know that things are very different from how they were 30 years ago, 20 years ago, or even five years ago. There have been rapid advances in technology that have reshaped T1D care.
How would you describe your T1D management 10 years ago compared to today?
Even if you can vividly remember what you thought then and how it compares to your life now, your perceptions of that period of your life are probably — at least a little bit — distorted. Because you have the benefit of the knowledge you’ve gained and everything you’ve experienced, there are some parts of what you remember that may be a little different than how they really occurred in the past. In psychology, we refer to this phenomenon as recall bias.
Recall bias matters for research, because when we ask people to report something they’ve experienced, we know that for many types of events, people’s responses will be impacted by their perceptions and feelings now in addition to what they remember of the past. If you’ve ever wondered why research studies might ask you to remember things “in the past two weeks” or “in the past month”, this is partly because of the bias that occurs with recalling events further back in time than a few days or weeks.
So, if we want to capture how something is in the moment, we need to ask people not to think back on what happened, but to capture it as it happens or in the very recent past.
But what if what we’re interested in not just one event, but how life changes over time? To do this, we need longitudinal research — studies in which there is more than one interaction (such as a survey or coming into a lab for a clinic visit) with participants. Sometimes, this occurs after only a few weeks of the original study. Sometimes, it occurs after a few months. And sometimes, although rare, studies can follow-up with the same people years later.
Pivotal longitudinal research in T1D
Incredible advances have been made in T1D treatments because of longitudinal research over long periods of time.
One study you may be familiar with is the DCCT (or Diabetes Control and Complications Trial), in which people with T1D were given one of two treatment types (intensive or standard) to see if changes to T1D treatment could help prevent or reduce complications. They first followed-up with participants after six years and found that more intensive treatment with insulin and glucose monitoring was linked with less early-stage microvascular complications (like retinopathy). And 30 years after that, with the intensive treatment, these participants still experienced fewer long-term complications than expected.
Another study by Bryden and colleagues (2003) re-contacted a subset of their (previously adolescent) participants over a decade later. The researchers found that T1D management improved from late adolescence to adulthood (around age 34 to 35). But the number of now adult participants who experienced diabetes complications and the number who experienced mental health conditions increased significantly.
The results of these studies prompted policy and clinical guidelines changes for T1D – like permanently changing T1D treatment recommendations to prevent complications and highlighting the need for supporting young adults around the transfer from pediatric to adult care.
How can we capture life with T1D across a lifetime?
The seemingly obvious answer is that, of course, we need longitudinal research. But one challenge many longitudinal studies have — especially clinical trials which have strict enrollment requirements for participants — is that they involve similar types of people from similar circumstances — otherwise known as a cohort. This is usually good for medical research, but for other types of research, it means that we have to be careful of cohort effects. That is, it might be unclear whether the effects we see are because that’s how things are or if there is something unique about this group of people because — for example — they are all the same age.
At the T1D Exchange, our goal is to gather people living with T1D across the United States from all walks of life and follow-up with them consistently to understand people’s experiences over a long period of time.
By using longitudinal research and touching base each year, we can understand: the changes that people experience in their diabetes management, their life circumstances, and even how changes in the technology they use over time impacts other aspects of their care and their lives. We can also compare people of different ages to see if they have differences in their experiences or T1D management as it’s happening — not years or decades later.
Why you might consider participating in longitudinal research
Think of where you might be five years or 10 years from now. What kinds of advancements in technology might make living with T1D much different than it is today? How will you navigate the challenges and stresses of living with T1D as your circumstances change across your lifetime?
By participating in longitudinal research like the T1D Exchange Registry, you’re helping researchers answer those questions so we gain a deeper understanding of what it is like to live with T1D across a lifetime.
If you’re not already part of the T1D Exchange Online Registry and you’re interested, consider signing up.
If you are already part of the T1D Exchange Registry, you have already contributed to our understanding of T1D at one point in your life — but consider filling out your Annual Questionnaire.
Together, we can paint a clearer picture of living with T1D, with the goal of improving lives through policy recommendations and insights.
My history with T1D since 1965/6 has to include all sorts of useful experiences, but I’m sure I’ve forgotten most of them. Probably the most important advice I was given by a doctor friend over dinner some four decades ago. Take managing bg seriously, she almost angrily told me. And I did!
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The Joslin 50 Year Medalist Study has included clinical longitudinal research. As a member of the study since 2008 I participated in the longitudinal research component in 20019. Yes, the studies are very important because there is definitely a growing number of patients. But, what happens to this research after it’s published? There’s huge growth in the “senior” housing industry, including assisted living facilities, but NOTHING is being done to provide any semblance of adequate medical care for individual who have lived long lives with T1. It’s a very frightening situation.