Myelofibrosis Caregiver Interview Series: Caregiver Input for Myelofibrosis Treatment Plans

In the final installment of the Myelofibrosis Caregiver Interview Series, Fadi Haddad, MD interviews Tim F., a caregiver from Pittsburgh, PA, about the critical role caregivers play in shared decision-making. The discussion between Dr Haddad and Tim F. highlights how active involvement, longitudinal observation, and communication of real-world treatment effects can meaningfully influence therapy selection and clinical outcomes.

TRANSCRIPT

Fadi Haddad, MD: You, as a caregiver, what has been your experience with the treatment plan of the patient? Were you involved in the creation of that treatment plan as a caregiver?

Tim F.: Yes, I believe I was. As caregiver, I went through and I went to all the doctor's appointments and I kept notes on everything that we talked about at the doctor's appointments where I had my questions. And after the doctor's office, I continued to keep track of things. So between me and our doctor, and obviously my lovely wife, we would discuss things, what worked, what didn't seem to be working. This medication sort of caused this, so maybe it's time to move on to something else. And as you guys go along, you're continually making course corrections for us. So when we were going into the second transplant and our doctor was making the treatment plan, we discussed it and it came down to the immunosuppressant that she wanted to use. And I was like, first, nah, I don't want to go there. I had a bad time with the last time.

She said, "I know there was some toxicity, but I really think this is the best way to go. I think we'll have the best chance for success." And I said, "Well, what you don't see in the medical records is that due to that toxicity, my wife, she had no idea who I was for over a week. And that's a very strange feeling. And especially as you're ... Is this temporary? Is this going to be permanent?" But that was a very scary time and I wasn't going back there again. But once I explained that to the doctor, she agreed with me and we switched to the other immunosuppressant. So yeah, I believe it's very important for the doctors to listen to the caregivers and also, not blindly, but you need to understand the caregiver and her capabilities and take as much information as you can to help with your overall plan.

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