Category: Shared Decision-Making

Sex, (Prescribed) Drugs, and Rock ‘n’ Roll: Approaching sexual and reproductive health with an autoimmune disease

On November 13th, Young Patients’ AREA hosted our second event of the year: Sex, (Prescribed) Drugs, and Rock n’ Roll: Approaching sexual and reproductive health with an autoimmune disease. In this event, we utilized a new format that included a mix of pre-recorded expert Q&A and live patient-shared experiences.

Dr. Brittany Huynh, pediatric rheumatologist and adolescent medicine specialist whose interests include reproductive health among adolescents and young adults with rheumatic and other complex chronic diseases.

Dr. Erica Brenner, pediatric gastroenterologist and clinical investigator currently investigating reproductive health among young patients with IBD.

Dr. Becca Overbury, rheumatologist with research interests in health care transition in adolescent and young adult patients with childhood and adolescent onset Rheumatic diseases.

Our experts covered a variety of topics including why having conversations about reproductive and sexual health with your disease specialist is important, strategies to start these conversations, and key points patients should know about how their disease and/or medications may interact with their sexual and reproductive health. Below are some of the highlights of what our experts spoke about, but be sure to watch the complete recording to hear their complete insights. 

Talking about these topics can be awkward, and doctors know that. To help broach the subject, they recommended strategies such as asking for one-on-one time with your provider (this is also good practice for getting independent in your care!), bringing up these questions early in the appointment to ensure there is plenty of time to discuss, or sending a MyChart message ahead of your appointment if you’d like. These are super important topics to talk about because your condition DOES overlap with your sexual and reproductive health. 

In terms of disease/medication interactions with sexual and reproductive health, we learned of risks of blood clots associated with certain conditions such as systemic lupus or Crohn’s disease, which may be further increased when using birth control that contains estrogen. Similarly, individuals with certain autoimmune conditions such as inflammatory bowel disease or those treated with high doses of steroids may be at higher risk of long-term bone density related side effects when using certain forms of birth control, such as Depo Provera (“the shot”). This section was incredibly informative and contained a lot of information I myself hadn’t heard about before, so I highly recommend reviewing the experts’ complete information in this section. 

Experts additionally emphasized that in the majority of cases, individuals with autoimmune conditions can have successful pregnancies if they wish to do so. Experts echoed that outcomes are most successful when your condition is well controlled and recommended communicating with your doctor ahead of time to ensure your medications are safe for pregnancy. Dr. Brenner also highlighted preliminary data suggesting that individuals with inflammatory bowel disease who do have trouble getting pregnant and choose to pursue assistive reproductive technology like IVF are just as likely to have a successful pregnancy as somebody without inflammatory bowel disease. 

Additionally, a key point brought up by Dr. Huynh emphasized understanding your emergency contraception options, like Plan B or ella: “This is a medicine that you can take no matter what disease you have, no matter what medications you’re taking, and it is safe. So anyone can take it.” Emergency contraception options like Plan B and ella are legal and available in all 50 states, though the more effective option, ella, does require a prescription. Dr. Huynh recommended asking your doctor for a prescription before you even need it so that you can have it on hand. 

Other resources recommended by our experts:

The complete recording of this event can be viewed here. All opinions expressed are the personal perspectives of these individuals and not representative of their institutions.

We thank Dr. Huynh, Dr. Brenner, and Dr. Overbury for contributing their time and expertise to this event.

Birth Control is Not One-Size-Fits-All: My Experience with the Rod

When I first heard the horror story of how a close family member of mine had had 13 miscarriages due to scar tissue in the fallopian tube caused by slippage of her IUD, I was mortified and immediately ruled out the IUD as an option for myself. I already hated the thought of having to undergo that insertion, having heard how painful it can be and how pain medications and anesthetics are not generally offered alongside it. To my knowledge, that only left me with two remaining options: the pill or the rod. With the pill, I knew that time management would be vital in ensuring that I took the medication at the right time and consistently, even if time zones were to change. The stress of possibly missing a dose and then running the risks of lower protection, along with the incredibly long list of horrid side effects that accompany the pill,  practically forced the rod on me as the most viable option. 

The rod, or implant, is a small, flexible rod that is inserted into your upper arm. It steadily releases the hormone progestin into your body to prevent pregnancy, and lasts approximately three to five years. It is low maintenance and is currently considered the most effective form of birth control. It seemed as though the rod had the highest protection rate and the least hormonal side effects—and it didn’t require me to remember anything other than that I need to get it replaced every three years.

As a 17-year-old in my first long-term relationship, I knew birth control was the right thing for me, but with my autoimmune disorder flaring up, I didn’t know how the rod would affect my body. I remember my physician telling me something like “one third of patients see reduced menstruation, one third of patients will cease to have a period, and the remaining unlucky third of patients will bleed lightly all of the time.” My thought at the time was that even if I was in that unlucky third group, a light but constant period doesn’t sound worse than becoming pregnant. Of course that is how you think when you assume the script writers of your story wouldn’t possibly place you in that unlucky third group.

I was in fact in that unlucky third group, but I never regretted my choice of birth control because the fear of getting pregnant was stronger than the dread of a never ending cycle. However, I deeply underestimated the drag of expensive menstrual products and the drag of out-of-whack hormones. The side effects of the rod, mixed with the fatigue and inflammation of my autoimmune disorder, led me straight into a depressive episode.

But in hindsight, that experience taught me something much more valuable than what birth control not to use: it taught me the importance of understanding my options and advocating for myself in medical decision-making. Every method of contraception comes with its own risks, benefits, and unknowns, and no single choice works for everyone. I learned that birth control isn’t just a prescription, it’s a conversation. It’s a process of asking questions, weighing priorities, and finding a balance between medical guidance and personal comfort.

When I finally revisited the topic with my doctor, I came prepared with research, questions, and a clearer understanding of my own body and needs. That discussion felt empowering rather than intimidating. It reminded me that the best healthcare decisions are not made for us, but with us.

So while my experience with the rod was difficult, it reshaped the way I approach my health. It showed me that shared decision-making is the key to feeling confident in your care. Birth control is not one-size-fits-all, and the more we talk about our experiences, the more we help others find what fits them.

Finding My Voice: Building a Partnership with my New Rheumatologist

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!

Shared Decision-Making Event Recap

On August 6th, Young Patients’ AREA hosted our first event of the year, Choose Your Own Adventure: Making Health Choices 101. This webinar, led by council member Hayden, introduced shared decision-making, identified ways patients can introduce it into their own care, and shared personal experiences from council members Ela and Kelsey. Additionally, our team created pocket card resources for you to print and carry with you to your appointments to help facilitate shared decision-making conversations with your healthcare team! Below you will find a detailed summary of the event content. The complete recording can be found here.

What is Shared Decision-Making?

Shared decision-making happens 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. This differs from healthcare models where healthcare providers make decisions for their patients, and simply prescribe treatment plans without much patient input.

An important part of shared decision-making is the conversation between healthcare providers and patients. This allows the medical team to inform the patient of relevant information regarding their treatment options and also allows the patient to inform their medical team about their treatment preferences. Collaboration ensures that the decision made positively impacts the patient’s health and daily living.

Shared decision-making is beneficial to many patients as it allows care teams to identify patients’ largest concerns and collaborate to identify solutions. This collaborative process helps improve patients’ healthcare experiences in and out of the clinic and facilitates positive visits and relationships. It also allows patients to have more freedom in directing the focus conversation during appointments. By identifying and selecting treatments that are most compatible with their lifestyle and preferences, patients generally have more positive perceptions toward their care and treatment.

Implementing Shared Decision-Making: Choice Talk, Option Talk, and Decision Talk

Elwyn et al. introduces the idea of Choice Talk, Option Talk, and Decision Talk to implement shared decision-making in healthcare settings.

Choice Talk is when you and your team identify available and reasonable treatment options. This type of conversation does not necessarily go in-depth about the treatment options, but instead provides a brief overview of the different options you can choose from and directions you can go with your treatment plan. During these conversations it may be helpful to write down all the options discussed with your care team, so you can reference them again at a later time and do further research into each option.

Option Talk is when you and your team discuss more detailed information about the treatment options discussed during Choice Talk. You may already have one or two preferred treatment options, but this is your opportunity to thoroughly understand each one and make sure your expectations surrounding the treatments are realistic. It is always helpful to ask questions about anything that is unclear, and to ask your team to repeat information so you can write it down and reference it later.

Decision Talk is when you consider your options and preferences to make a decision. This is the time to identify the variables that are most important to you. How often do you want to take medication? Is nausea a side-effect you absolutely cannot tolerate? Do you prefer infusions over injections? Or injections over pills? Consider your own preferences before making a final decision. Defer if you need to! It is perfectly reasonable to ask for more time to think about your options. It is sometimes helpful to discuss your options with someone you trust outside of the appointment.

Shared Decision-Making Pocket Card

We have created a pocket card resource for you to download and carry with you to your appointments to help facilitate shared decision-making conversations with your healthcare team. Click here to download and print the PDF, then bring it with you to your appointment for reference!

Final Reminders

We hope you’ll keep building these skills and using your voice in your healthcare journey. Whether you’re new to the concept or already practicing it, remember that you deserve to be heard and to have a say in your treatment decisions.

References

Elwyn, G. et al. (2012). Shared decision making: A model for clinical practice. Journal of General Internal Medicine, 27(10), 1361-1367. DOI: 10.1007/s11606-012-2077-6