Patient Story Editorial - Chris


5 Tips for Effective Communication with Your Healthcare Team

 Provider Editorial – Chris Yedinak DNP, FNP, MN, BSN, Grad Dip Ed.

Yedinak 2016There are a lot of things, in my case shopping or staying in touch with old friends, that are made easier in a virtual world. However, for some patients, a lack of in-person conversation makes discussing acromegaly difficult. And now, with COVID-19 increasing the adoption of telehealth, some patients may feel like this places an added barrier to having productive conversations. The advent of new treatments such as oral octreotide may be prompting questions that can be addressed during virtual format visits. Whether you want to talk about symptoms or treatment options, as a Doctor of Nursing Practice, I strongly believe that approaching your virtual visit with a game plan can help make sure your needs are heard.

With the global spread of COVID-19, patients are relying more and more on telehealth for healthcare visits and check-ins with medical providers. While convenient, the lack of in person face-to-face interaction plus time restrictions can make it difficult for some patients to effectively communicate with healthcare providers.

I have provided care for patients with pituitary and adrenal disorders, including acromegaly, for the last 18 years. I have found that having focused conversations with your medical providers and specialists leads to the most meaningful outcomes, particularly around symptoms and treatment plans. For example, patients want (and need) to understand options and learn about available treatment plans in the context of their own lives, particularly with the advent of new therapies, such as oral octreotide. Telehealth appointments shouldn’t be a barrier to having those conversations.

The best piece of advice I can give my patients is to “make a game plan for your appointments.”

Having a plan allows you to be prepared and informed on the topics you want to talk about with your healthcare team. So, here are my top 5 tips for talking about acromegaly with your doctor team during telehealth visits.

It’s your experience, and only you can relay how you’re feeling to your healthcare team. With large amounts of time between visits, it’s important to log your symptoms so you can talk about any changes with your doctor. Take note of when your symptoms occur, what bothers you the most, and how your current treatment is handling your symptoms. This information can help your care team build the best treatment plan for you.

Going into your visits, it’s important to stay up to date about the acromegaly disease and treatment landscape. Do your own research ahead of time while making certain to use reliable information sources, such as well‐known patient forums, patient-focused websites, or research published by medical journals. This way you can learn about all treatment options and can talk with your doctor during your next telehealth visit to evaluate the impact of your treatment on your symptoms, which treatment option is most effective for you, and why. You are your own best advocate, and the best way to do that is to stay well informed.

Just like researching helps you prepare, it’s also very important to think about what questions you want to ask during your visit. Based on your symptoms and research, write down questions so that you can prioritize the items that are top of mind for you. There may not be time to discuss all of your questions during a virtual visit, so make sure your questions are brief and specific, while still giving you the answers you’re looking for.

Some example questions may be:
• What if I travel a lot? How do I go on vacation?
• How do I fit the treatment protocol into my day?
• When/how often should I plan on getting my labs drawn?
• When should I plan my follow-up appointments/imaging?

One of the most important pieces in developing a game plan for your appointments is understanding what you want to get out of the virtual visit. With this tip, I like to say, “think beyond a particular appointment – think about outcomes.”

Based on your priority items for talking to your doctor, you may want to come out of your visit with guidelines on symptom management or a treatment protocol for continuing on your current treatment or potentially switching to a different treatment method.

Setting your goals and knowing your motivations will help you plan out and receive the best treatment you can with the assistance of your healthcare team. Define what you’re looking for from your treatment and care team, what treatment is most convenient for you based on your lifestyle, and how you can minimize your side-effects. You can even tell your doctor ahead of time that you’d like to talk about your goals at the next visit. And then work with your care team to define these goals so they can best assist you in meeting them.

Although virtual visits with your healthcare team may not give you that in person face-to-face discussion you want, you can still have meaningful and productive conversations. Just remember – come prepared to your virtual visit and be ready to advocate for yourself and talk about what’s most important to you in your acromegaly treatment. Like I said, only you know how your body feels, so don’t be afraid to use your voice to advocate for the care you need.


What is MYCAPSSA (octreotide) for?

MYCAPSSA is an oral prescription medicine used in the long-term maintenance treatment of acromegaly in people for whom initial treatment with octreotide or lanreotide has been effective and tolerated.

If these treatments are effective and your body is tolerating it, you may be eligible to take MYCAPSSA instead of the injections. Ask your doctor if this oral treatment is appropriate for you.

What is the most important safety information I should know?

MYCAPSSA can cause problems with the gallbladder. Tell your healthcare provider if you have any of these symptoms: sudden pain in your upper right stomach (abdomen) or right shoulder or between your shoulder blades; yellowing of your skin or the whites of your eyes; fever with chills; or nausea.

MYCAPSSA may affect your blood sugar, thyroid hormone, or vitamin B12 levels. Tell your healthcare provider if you have any problems or conditions related to these. Your healthcare provider may monitor these levels during your treatment with MYCAPSSA.

Tell your healthcare provider if you have an irregular heartbeat.

Who should not use MYCAPSSA?

MYCAPSSA can cause a serious allergic reaction including anaphylactic shock. Stop taking MYCAPSSA right away and get emergency help if you have any of these symptoms: swelling of your tongue, throat, lips, eyes or face; trouble swallowing or breathing; severe itching of the skin with rash or raised bumps; feeling faint; chest pain; or rapid heartbeat.

Do not use MYCAPSSA if you are allergic to octreotide or any other ingredients in MYCAPSSA. If you need to know the ingredients, ask your healthcare provider or pharmacist.

If you have certain other medical conditions, you should use MYCAPSSA with caution. Tell your healthcare provider about all your medical conditions, especially the following: pregnancy or breastfeeding; liver disease; kidney disease; or difficulty in emptying bladder completely.

Tell your healthcare provider about all the medicines you take. MYCAPSSA may affect the way other medicines work, and other medicines may affect how MYCAPSSA works.

What are the possible side effects of MYCAPSSA?

The most common side effects are headache, joint pain, nausea, weakness, diarrhea, and sweating a lot.

Talk to your healthcare provider if you have any side effect that bothers you or that does not go away. You may report side effects to the FDA at 1-800-FDA-1088.

Keep MYCAPSSA and all medicines out of the reach of children.

How should I take MYCAPSSA?

Do not take MYCAPSSA with food. MYCAPSSA should be taken with a glass of water on an empty stomach. Take MYCAPSSA at least 1 hour before a meal or at least 2 hours after a meal (for example, you could take your morning dose 1 hour before breakfast and your evening dose at bedtime).




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