My name is Kelsey, I’m 23 years old, and I live with spondyloarthropathy/enthesitis-related arthritis. Recently, I transitioned from my pediatric rheumatologist to an adult rheumatologist. This is a big step that many young people with chronic conditions eventually face, and it can often be difficult. In my case, this transition turned out to be the perfect example of shared decision-making in action.
Shared decision-making is when patients and their healthcare providers work together to make decisions about treatment that are informed by science, the patient’s history, and the patient’s values and preferences. Instead of my doctor simply prescribing me the next medication, I wanted to have a thoughtful discussion that took into account both the science and my lived experience.
At the time, I was considered “stable” on my medication regimen, but I was struggling to consistently take my weekly injection. All of my other medications were pills taken 1-2 times per day, but the injection required multiple steps, and I often delayed it until my pain reminded me I couldn’t wait any longer. It simply wasn’t working for me, and I knew addressing this was my top priority since I was seeing a new rheumatologist. I prepared for my first appointment by requesting information from my insurance regarding which specialty medications are preferred by my plan. Additionally, I wrote down which administration methods (injections, pills, infusions, etc) would be ideal and which one I could tolerate.
When I met my new doctor, I explained my challenges and shared my preferences. From there, we had a thorough conversation about the options available for my type of arthritis. Because I’d already done my homework, our discussion was focused and productive. Additionally, knowing which medications my insurance would cover helped to guide this discussion and avoid later delays. Together, we decided to switch to a daily pill that I could take alongside my other medications. This switch has been life-changing. It’s improved my adherence, lowered my stress, and helped me feel more in control.
I believe my preparation ahead of time was most helpful for this overall process. By identifying what wasn’t working and having ideas about what might be better for me, I was confident and ready to fully participate in the decision-making process. Just as importantly, my doctor seriously considered the experience I was sharing.
I think it is also important to note that shared decision-making is an ongoing process. If this medication is not effective for my arthritis or if I come to find daily pills aren’t actually sustainable for me, this is certainly a discussion I will have with my doctor again. As a whole, this has had a dramatically positive impact on my life, and I recognize I am extremely fortunate to have a doctor who acknowledges and trusts my input.
Transitioning to adult care can feel intimidating, but shared decision-making can make it empowering. By preparing ahead of time and openly sharing your priorities, you can build a strong partnership with your doctor from the beginning of the relationship to find a treatment plan that truly works for you. To learn more about how you can utilize shared decision-making in your own care, check out our previous blog post!
