Collaborate | Understanding Your Role in Your CLL Care
Collaborate | Understanding Your Role in Your CLL Care from Patient Empowerment Network on Vimeo.
How can chronic lymphocytic leukemia (CLL) patients actively engage in their care? This animated video shares tips and advice for being proactive, including participating in decisions and educating oneself about CLL.
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Transcript:
Dr. Johnson:
Hi! I’m Dr. Johnson, and I’m physician who specializes in blood cancers. And this is Joseph, who is living with chronic lymphocytic leukemia—CLL for short.
And in this series of videos, Joseph and I will discuss steps to help you learn about your diagnosis, understand your treatment options, and collaborate with your healthcare team on CLL care decisions.
Joseph:
And although it may sound simple, collaborating with your team isn’t always second nature.
When I was diagnosed with CLL, I was confused—not only about the disease itself but about MY role in making decisions about my care. I didn’t feel comfortable sharing my opinion or asking questions when I needed more details.
Dr. Johnson sensed my hesitancy and explained to me that educating myself about my CLL would allow me to feel more confident when participating in care decisions.
Dr. Johnson:
Right, Joseph. The first step to feeling comfortable talking with your doctor is to learn about your disease.
You can start with advocacy group websites that have educational resources, such as the Patient Empowerment Network. PEN covers all things CLL—from the basics for newly diagnosed patients to information about cutting-edge therapies.
Joseph:
That’s right! At the advice of Dr. Johnson, I downloaded their office visit planners to help me organize my thoughts and to take notes during my appointments.
Dr. Johnson:
And The Leukemia & Lymphoma Society is another credible place to start. The LLS provides both educational information AND support resources.
Joseph:
You can also ask your doctor for recommendations—or use your patient portal. The portal often contains patient education links and resources.
Dr. Johnson:
But keep in mind that the information you find online is never a substitute for medical advice. Be wary of sites that are opinion-based or focus on one patient’s individual experience.
You should always talk to your doctor about what you’ve learned to get your questions answered.
Joseph:
So true, Dr. Johnson. And once I felt I had a good understanding of CLL, I started to take proactive steps and to participate in my care. Here’s my advice to others:
- First, be sure to write down your questions and goals prior to your appointments. It’s often hard to remember things on the spot.
- Next, bring a loved one along to participate in your appointments and to take notes. It’s a good idea to discuss your takeaways after the visit, too. This will help you retain the information you heard.
- Also, try to get past your fears of “bothering your doctor”—be honest about how you are feeling. It’s especially important to mention any symptoms or side effects because this can have a direct impact on your care. Remember, your doctor can’t troubleshoot an issue unless you tell them what’s going on.
- And if you are taking these steps and still don’t feel like you are being heard—you should consider getting a second opinion or even changing doctors.
Dr. Johnson:
That’s great advice, Joseph—you should always feel like you are at the center of your care. We hope this video inspires you to collaborate in your care.
And, don’t forget to download the resource guide that goes with this video—it provides an overview of the information we covered.
Joseph:
You can also visit powerfulpatients.org/CLL to view more videos with Dr. Johnson and me. Thanks for joining us!
