Doctors Miss the Mark on MPN Symptoms, New Study Shows
by David Wallace
We’ve suspected it for years, but now there’s proof: doctors aren’t fully grasping how bad MPN symptoms really are for patients. I just read this eye-opening study from a German research group that tracked almost 4,000 MPN patients, and the disconnect between what people experience and what their doctors think is happening is pretty alarming.
The study (published in Leukemia) found that while 93% of patients reported having at least one symptom—with fatigue knocking most of us out—doctors consistently wrote down fewer and less severe symptoms in their notes. Night sweats, itching, weight loss? Patients reported these far more often than their doctors documented them.
What really struck me was that even with treatment, many symptoms didn’t improve much over time (this differs from my personal experience). And here’s the scary part: patients with severe symptoms actually had higher death rates. This isn’t just about comfort, it’s about survival.
So why aren’t doctors getting it? From my perspective, there are a few problems:
Sometimes in those rushed 15-20 minute appointments, we patients don’t mention everything or downplay how bad things really are. “How are you?” “Fine.” (Narrator: They were not fine.)
Doctors seem obsessed with blood counts and other measurable stuff while glossing over the “subjective” symptoms that are ruining our quality of life.
Most doctors don’t use any standardized symptom assessment forms, so each visit becomes this random conversation that might miss important issues. My doctor, an MPN expert, is a firm believer in using the symptom assessment form. You may want to discuss this approach with your doctor.
Treatment Isn’t Solving Everything
This really bothered me—the study found that patients on treatments like interferon, hydroxyurea, and JAK inhibitors didn’t report significantly fewer symptoms than untreated folks. So what gives? Are we focusing too much on numbers and not enough on how patients actually feel?
What We Can Do About It
If you’ve got an MPN, you’ve got to be your own advocate.
- Keep a symptom diary. Write down everything, even if it seems unrelated.
- Speak up at appointments! Your doctor isn’t a mind reader.
- Ask specifically about using patient-reported outcome tools during your visits.
Numerous patients have told me they bring a list of questions to every appointment, and it’s made a big difference in their care.
The Big Picture
This study confirms what many in the MPN community have felt for years—there’s a serious gap between what we experience and what makes it into our medical records. Better communication, standardized symptom tools, and treatments that target quality of life (not just blood counts) are desperately needed.
Until the medical community catches up, we patients need to keep speaking our truth—loudly and clearly. Our symptoms are real, they matter, and acknowledging them fully could literally save lives.
Check out PV Reporter if you want more information on living with MPNs. And if your doctor isn’t listening, maybe it’s time to find one who will.
Reference
Manz, K., Heidel, F. H., Koschmieder, S., et al. (2025). Comparison of recognition of symptom burden in MPN between patient- and physician-reported assessment—an intraindividual analysis by the German Study Group for MPN (GSG-MPN). Leukemia. https://doi.org/10.1038/s41375-025-02524-7.
