Healthcare Systems – Young Patients' AREA

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

A dark blue image with teeth outlines in the background in green. In the middle of the image is a giant cartoon tooth with dentists studying it.

How Autoimmune Conditions Affect Dental Health

When I was first diagnosed with psoriatic arthritis, I put all of my focus on my disease. I sought information about my condition nonstop, tried everything to feel better, and attended doctor appointments frequently. With my disease at the forefront of my mind, I neglected my dental health. Like most preteens, I had braces in middle school. My family paid thousands of dollars so I could have straight, white, shiny teeth. Unlike most kids who get braces, I cared for my teeth, brushing twice daily and flossing between my brackets. I never had a cavity in any of my adult teeth because I respected my parents’ hard work, so when I sat in a new dental office after moving and not going to a 6-month cleaning, I was told I had ten cavities. I cried in shock and fear. I was disgusted with myself. How could I go from having a clean mouth to having so many cavities?

My dentist did not bother to talk to me about potential reasons for this. Although it had been a while since I went to the dentist, I still cared for my teeth like always. My dentist shrugged and told me it must be due to sugary drinks. I tried to protest his accusations, but telling him I didn’t drink soda while he was drilling into my teeth was difficult. They filled and drilled my problem teeth, and I left with my wallet emptier and my self-esteem lower. After my impersonal visit to the dentist, I switched to a different dentist. If you do not like a health provider, you can shop around. You deserve to be treated respectfully, and I knew I needed to change providers.

My new dentist was Dr. Andrea Wallace at Wallace Family Dentistry. My consultation with Dr. Wallace comforted me in ways I couldn’t imagine. I was overjoyed that I put myself first and found a new provider. Wallace examined my previous X-rays and confirmed I had more cavities since my recent fillings. I felt like breaking down, but I got the courage to ask her why this was happening to me. We discussed my overall health issues, and she informed me that new research found a link between autoimmune diseases and decay. She told me that my teeth were clear with little to no plaque, making my cavities a mystery rather than my fault. She also gave me some new dental hygiene products with nano-silver. I scheduled my next filling appointment with faith that I was in the right hands.

Curiosity got the best of me, and I began reading research articles about my condition. While there are few resources, a few points are widely understood. The two problems have a definite link and are not a one-way street. Autoimmune diseases may cause dental issues, and dental problems can create autoinflammatory responses. The most known link is how autoimmune diseases or medications patients take cause dry mouth. Saliva covers and remineralizes teeth, so the teeth can break down when there is not enough saliva in the mouth. It is hard to keep up with dry mouth with lounges, sprays, and other products because they are not accessible most of the time. My job requires me to talk constantly, and while I drink water throughout the day, it isn’t enough to combat the dryness from my medication, methotrexate. Some researchers believe that people with specific conditions have more acidic saliva, causing quicker decay, too. Collagen is another factor to consider. Various connective tissue diseases such as lupus, rheumatoid arthritis, and scleroderma cause inflammation in collagen. Collagen is essential because it makes up the fibers in teeth and bones.

In addition to the previous research, a breakthrough study revealed a link between autoimmune diseases and a tooth enamel defect. The study found “that most patients with APS-1 and celiac disease develop autoantibodies, especially of the IgA isotype, against proteins specific to ameloblasts. As a consequence, the body’s tolerance to these proteins is disturbed, leading to impaired enamel formation.” (Breakthrough Study Reveals Link between Autoimmune Disorders and Tooth Enamel Defects – Institute of Molecular Genetics of the Czech Academy of Sciences) APS-1 refers to the autoimmune polyglandular syndrome. My enamel has been fading, causing noticeable white spots on my teeth. This discovery could lead to the answer I have been seeking, but only time will tell as researchers continue to study this phenomenon with other patients and autoimmune diseases.

Even though I know that every dental visit will result in more cavities, I am now more educated about my situation. Cavities can be produced for other reasons than poor hygiene, and while I will continue to brush and floss daily, I refuse to obsess over my teeth’s flaws because it has simply been proven to be not my fault. I hope that in the future, more research will be conducted to help patients like me with their dental health because although insurance doesn’t consider it a part of your overall health, dental health is critical.

References:
Breakthrough Study Reveals Link between Autoimmune Disorders and Tooth Enamel Defects – Institute of Molecular Genetics of the Czech Academy of Sciences.

Being LGBTQ+ in the Doctor’s Office

June is Pride Month! As a council with many members identifying as LGBTQ+, I wanted to spend some time reflecting on how our LGBTQ+ identities have affected our healthcare experiences as chronically ill young adults.

I’m Sophia, and I have been chronically ill since I was 13 years old. My gender and sexuality have impacted my perspective on many things, including my experiences with chronic illness and interacting with the healthcare system. In my experience, I feel that my coming to terms with my gender and sexual identity was heavily impacted by chronic illness and how this affects my view of my body. However, even as someone who spends a lot of time contemplating this and having discussions about gender, sexuality, and chronic illness with friends, I have never explicitly come out to any of my healthcare providers (HCPs). So lately, I’ve been thinking about why that is and what other queer and trans people’s perspectives are on coming out to HCPs.

Why does it matter for healthcare providers to be aware of a patient’s LGBTQ+ identity?

I’m sure most of us are aware of the health disparities LGBTQ+ individuals experience. These disparities are due to factors such as societal attitudes, stigma associated with certain identities, discrimination, or provider biases. For queer individuals, HCPs’ assumptions and attitudes toward the topic of sexuality can negatively impact queer patients’ trust in their providers and communication of health information and issues, which can affect the care they receive (Hudak & Carmack, 2018).

Transgender, nonbinary, or other gender non-conforming patients also experience unique barriers when receiving care. Sequeira et al. (2020) discussed health disparities in trans youth specifically, explaining that societal stigma, discrimination, and other barriers to care contribute to health disparities and lower rates of healthcare utilization. Having HCPs who are aware, affirming, and equipped to work with LGBTQ+ patients can help with addressing disparities.

What influences patients’ decisions on whether or not to come out to providers?

Hudak and Carmack (2018) conducted a study that helped them identify patients’ considerations when deciding whether to share their identity with their HCP. Some of the factors they identified as impacting a patient’s decision on whether or not to come out were past coming out experiences, concern that the information would be shared with family or community members, comfort and familiarity with the provider, perception of a providers likelihood to be accepting, and fear that the quality of care would be affected or providers would refuse care.

In addition to these considerations, trans and gender non-conforming people often think about negative interactions that could result from sharing their identity with a provider. The 2022 U.S. Transgender Survey reports that “of those who saw a health care provider within the last 12 months, nearly one-half (48%) reported having at least one negative experience because they were transgender, such as being refused health care, being misgendered, having a provider use harsh or abusive language when treating them or having a provider be physically rough or abusive when treating them” (James et al., 2024, p. 16). Fear of negative interactions with providers heavily factors into someone’s decision to come out, as well as concern over whether they will even be able to access care as a trans person (Baldwin et al., 2018).

Personally, what has contributed most to the fact that I am not out to my HCPs is just that they have not brought up the topic of gender or sexuality. On forms I fill out at each clinic, there’s no place to list pronouns. If I wanted to share my pronouns, I’d have to bring it up, and I’ve decided it’s just not worth it. It’s been solely my responsibility as the patient to bring up the topics of gender and sexuality. If asked on forms or by a provider about this, I’d feel better about sharing, because then I’d know it is something the provider is open to receiving. But for now, I just ignore the topic.

What helps patients feel comfortable being out to their providers?

One thing providers can do to help patients feel comfortable coming out is start conversations regarding gender, sexuality, and sexual health. Hudak and Carmack (2018) report that LGB patients who participated in their survey clearly expressed their desire for providers to start the conversation, creating the space to be able to discuss important health information related to sexual health and gender-affirming care.

Regarding comfort levels being out to HCPs, patients like doctors who demonstrate experience in treating LGBTQ+ patients. This can include providers being familiar with treating trans patients and having knowledge of issues trans people face concerning accessing necessary health care. If providers are not experienced in working with trans patients, some patients appreciate if the doctor is upfront about this and communicates that they will research to familiarize themself with working with trans patients, consult with other doctors, and most importantly, listen to and respect the patient (Baldwin et al., 2018).

More inclusive clinic practices also help patients feel more comfortable being out. Creating an inclusive clinic environment could involve updates to forms where patients can update names, pronouns, or other identity changes whenever they are seen. This creates a routine practice where patients can communicate their identity to HCPs without having to bring it up in an appointment if they do not feel comfortable doing so. For this to work, everyone in the practice needs to be educated on working with LGBTQ+ patients. A more inclusive environment is created when providers have essential, basic information on issues related to gender and sexuality and the major health concerns of the LGBTQ+ population.

Regarding some of our council members’ experiences, we have a variety of experiences when it comes to being out to providers. As I mentioned, I am not out to any of my specialists. This has been manageable for me because I would rather deal with any uncomfortable interactions regarding assumptions my providers make about my gender or sexuality than be the one to bring it up, especially when it is not clear what response I will receive from them.

I talked to another council member, Hayden, to hear how these discussions go with his specialists when they are discussed. He mentioned a stark difference between how discussions go at the clinic where he receives gender-affirming care versus at the rheumatologist. With his rheumatologist, there are no discussions about sexual identity or reproductive health, and for discussions surrounding gender, nothing besides their doctor confirming he is still on testosterone when going over prescriptions. There is no process in place to ask for preferred names or pronouns, so it is then Hayden’s responsibility to share these and make corrections, if they decide it is even worth it when providers mess up. This keeps adding to the list of things trans patients have to do when transitioning. For example, when changing their legal name, a patient would have to follow up to ensure this change transfers to clinics, insurance, prescriptions, etc.

Overall, there is so much that could be updated within clinics to better their interactions with LGBTQ+ patients. Having regular discussions about these topics, handling them with care, and respecting patients could help to reduce health disparities among LGBTQ+ individuals, giving patients access to care that is helpful to them, appropriate, safe, and supports their mental well-being. Not to mention how much easier it would be on us as chronically ill LGBTQ+ individuals, who already have so much to deal with in regards to managing our care.

References

Baldwin, A., Dodge, B., Schick, V. R., Light, B., Schnarrs, P. W., Herbenick, D., & Fortenberry, J. D. (2018). Transgender and Genderqueer Individuals’ Experiences with Health Care Providers: What’s Working, What’s Not, and Where Do We Go from Here? Journal of Health Care for the Poor and Underserved, 29(4), 1300–1318. https://doi.org/10.1353/hpu.2018.0097

Sequeira, G. M., Ray, K. N., Miller, E., & Coulter, R. W. S. (2020). Transgender Youth’s Disclosure of Gender Identity to Providers Outside of Specialized Gender Centers. Journal of Adolescent Health, 66(6), 691–698. https://doi.org/10.1016/j.jadohealth.2019.12.010

Hudak, N. C., & Carmack, H. J. (2018). Waiting for the doctor to ask: influencers of lesbian, gay, and bisexual identity disclosure to healthcare providers. Qualitative Research in Medicine & Healthcare, 2(1). https://doi.org/10.4081/qrmh.2018.7157

James, S.E., Herman, J.L., Durso, L.E., & Heng-Lehtinen, R. (2024). Early Insights: A Report of the 2022 U.S. Transgender Survey. National Center for Transgender Equality, Washington, DC.

Coping with Needle Phobia

Once a week, I stand in front of the mirror, holding an autoinjector inches away from my stomach, frozen. All I have to do is push the needle into my skin and let the device administer the medication for me. I look into the mirror and say to myself, “It will only take a few seconds. It will all be over soon. It won’t even hurt that bad. Come on, you can do it. 1, 2, 3…”

I have been taking that medication every week for the last three years, but I still freeze every time. There is something about the needle that makes my heart start racing and my stomach turn. While I feel uneasy administering my medication, there are millions of people who would be unable to do it at all, because they experience needle phobia.

What is needle phobia?

Needle phobia, or trypanophobia, is an extreme fear surrounding needles and injections. According to the Centers for Disease Control and Prevention, this phobia affects about 2 in 3 children and 1 in 4 adults, and can cause symptoms such as anxiety, nausea, dizziness, low blood pressure, and fainting.

This fear not only causes discomfort and anxiety for those affected by it, but it can worsen their health outcomes as well. Some people are so fearful of needles that they choose to skip vaccinations and doctor’s appointments just to avoid interactions with needles. However, needle phobia is especially burdensome for people living with chronic illness as needles are hard to avoid. They are often used in blood draws or to administer medication; things that cannot be skipped without compromising one’s health.

So, as individuals living with chronic illness, how can we improve our experiences surrounding needles and learn to cope with our fear?

What causes needle phobia?

While there are many different reasons that someone may be fearful of needles, here are some of the most common causes of needle phobia:

- Anticipated pain associated with needles and injections.
- Negative past experiences involving needles.
- Anxiety surrounding needles and lack of control during procedures such as blood draws.
- Natural vasovagal reaction, or a sudden drop in blood pressure at the sight of blood and needles, sometimes causing fainting.

Regardless of the cause of your needle phobia, it is important to remember that the feelings you experience are real and valid. However, recognizing the cause of your fear may be helpful in finding coping strategies. For example, my biggest fear during my injections is how painful it might be. By identifying this, I can focus on strategies that will help me alleviate pain during my injections, making the whole experience better.

Strategies to cope with needle phobia

Because interactions with needles are unavoidable for people with chronic illness, developing useful coping strategies is important, as it can help you feel more comfortable when facing needles and, over time, might help you overcome your fear.

If you are fearful of the pain associated with needles, it is important to remind yourself that the procedure involving the needle (vaccine, blood draw, or injection) is only temporary. Additionally, you can ask your healthcare team for topical anesthetics, such as cold spray, to numb the area being poked and reduce pain. When doing injections at home, you can also use ice to numb the area being injected. My healthcare team offered cold spray when getting my first intravenous infusion, and the spray completely numbed my arm; I had no idea that the needle had been inserted until I looked down, and it was already done!

If you have had negative past experiences with needles, be transparent with your healthcare team. Let them know about your fear of needles and poor past experiences so that they can work to create positive experiences for you. Another strategy is to associate other positive experiences with needles and those procedures. I have made a habit of getting myself a sweet treat, such as coffee or ice cream, after my appointments or injections. That way, I have something to look forward to before the procedure, and I focus less on the needle.

If you experience anxiety during procedures with needles, try using anxiety reducing strategies, such as slow, deep breathing. You can also distract yourself during the procedure; try talking with the people in the room, looking around the room, or visualizing yourself in another location doing something else. I often find myself reading the different posters around the doctor’s office during blood draws or infusions. Another strategy is to bring family or friends to your appointment or to ask for their assistance in administering injections at home; their support can help ease your anxiety.

If you experience lightheadedness or fainting around needles, inform your healthcare team of this before your procedure. Ask if you can lay down before and during the procedure, and avoid looking at the needle, as this can trigger lightheadedness. To prevent a drop in blood pressure, try practicing progressive muscle relaxation. To do so, choose a muscle group to contract, such as your legs or abdomen, and hold the contraction for 10 seconds. Slowly relax and stay relaxed for 20 seconds. Choose another muscle group to contract and repeat, but remember to keep the area being poked relaxed. The contraction of muscles will increase your blood pressure, and repeatedly contracting your muscles will help keep you distracted. If you are unable to administer your own injections due to lightheadedness and fainting, talk to your healthcare team, as they might be able to offer assistance or other treatment options. You can also talk to your family and friends and seek their assistance in administering your injections. For the first few months of my injections, my dad did them for me. Having more exposure to the injections with his help eventually gave me the confidence to administer the injections myself.

Moving forward

While these coping strategies might not make your needle phobia go away, over time, you might find that your symptoms start becoming more manageable. When I first started my injections, I thought I would never be able to do them on my own, but now, all I need are a few deep breaths. Living with a chronic illness has its many challenges, and needle fear may be one of them, but it’s not a challenge we cannot face and overcome.

Category: Healthcare Systems