Informed Patients Have a ‘Realistic and Honest’ Relationship with their MPN Disease

It is important for patients with myeloproliferative neoplasms (MPNs) to keep open conversations with their doctor about why lab work is being done and keep track of those that are done on your own.

Dr. Laura Michaelis, an associate professor at the Medical College of Wisconsin, says that keeping track of labs is not for every patient and is usually the physician’s responsibility.

“But for an engaged patient, which means somebody who’s a partner in their care, it’s important to understand a little bit of why you’re going through all of what you’re going through as part of that. It helps you understand the reasons behind the treatments, it helps you monitor for side effects of the treatments,” Michaelis said in an interview with CURE®.

At CURE®’s Educated Patient® MPN Summit, Michaelis presented on the importance of different treatments and lab work for patients with MPN. One procedure that she highlighted is a bone marrow biopsy, a necessary step at the onset of diagnosis.

Another important piece of information is risk stratification, which should be done at diagnosis but can be redone if the disease progresses, a risk for survival or blood clots might not be the same at diagnosis as it is years later. Risk stratification should especially be considered before switching therapy treatment, Michaelis said.

Before a lab is done, a patient can ask their doctor questions to stay informed. Michaelis said some questions could include: “Are there any of these I should pay particular attention to?” Or “What are the ones that you’re looking at when you’re making a decision about how well I’m doing?”

Staying up to date with labs and maintaining open communications can help patients be more in the know with information that they may have otherwise missed . For example, if the platelet count has gone down by 40% a patient could notice that and bring it up to their doctor if they hadn’t already.

Many hospitals offer electronic portals for patients to see their lab results, which is a good way for a patient to keep track of their own records. “It’s almost like your medical record is at your fingertips anytime,” Michaelis said. A patient can discuss with their doctor which numbers are important to pay attention to and see those on the lab records. Another point she brings up is that if a patient seeks a second opinion or moves, the new physician can see the highlights of their last care.

“It’s not important for everybody but in my opinion, an informed patient… has a more realistic and honest relationship with their disease,” Michaelis concluded.

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