Finding an MPN Specialist
Author: Voices of MPN
WHAT IS AN MPN SPECIALIST?
Because myeloproliferative neoplasms (MPNs) are considered rare diseases, they are not widely known. That’s why it’s important to find a Healthcare Professional who specializes in caring for patients with chronic blood cancers, such as polycythemia vera (PV), essential thrombocythemia (ET), and myelofibrosis (MF).
Throughout the course of your MPN journey, you may see a variety of Healthcare Professionals. This may include a “hematologist-oncologist,” a Healthcare Professional who specializes in treating people with blood cancer. However, not all hematologist-oncologists have first-hand experience treating MPNs. That’s why there may be certain advantages to adding an MPN Specialist to your healthcare team. They may offer more detailed information about your condition.
An MPN Specialist is a Healthcare Professional who specializes in caring for patients with MPNs. Some of the reasons to visit an MPN Specialist may include:
- You want another opinion about your diagnosis or care management plan
- You want access to different medical resources and facilities
- You want more detailed information about your condition
- You want to explore specialized care management options
- Your current doctor has limited experience with your condition
It’s important to remember that seeking out the care of an MPN Specialist doesn’t mean that you don’t trust your existing Healthcare Professionals. In fact, an MPN Specialist can work in consultation with your existing Healthcare team to help ensure that you have the most comprehensive care possible.
HOW CAN I FIND AN MPN SPECIALIST?
Depending on where you live, it may not always be possible to find an MPN Specialist in your immediate area. In some cases, it may require some travel. That’s why it’s important to ask about multiple office locations as well as the availability of telehealth (virtual) appointments.
There are several ways to find an MPN Specialist, including:
- Using the online MPN Specialist Finder tool
Other ways to find a Specialist may include:
- Requesting a referral or recommendation from your primary Healthcare Professional or local cancer center
- Contacting your insurance company
- Searching online for cancer research centers
- Asking your MPN Support Group
- Contacting professional blood cancer and MPN advocacy organizations
- View MPN advocacy resources
WHAT QUESTIONS CAN HELP ME CHOOSE AN MPN SPECIALIST?
It’s important to take an active role in your own care by doing your research and asking questions that can help you make informed decisions about your care, including who is going to help you manage it.
The following questions can be used to guide your discussions while consulting with various Healthcare Professionals:
- How much experience/training do you have caring for patients with MPNs
- How many MPN patients are you currently managing?
- Are you board-certified and licensed?
- Note: A “board-certified” hematologist-oncologist is licensed to practice medicine, has additional education and training in hematology-oncology, and has passed specialty medical board examinations
- Do you belong to any MPN professional societies?
- Have you participated in any MPN clinical trials?
- What MPN and/or hematology/oncology conferences have you attended?
- Are you willing to collaborate/consult with my other Healthcare Professionals as part of my ongoing care?
- Are there additional support resources available to help me with questions and quality-of-life concerns (eg, nurses, case managers, social workers)?
- What is the average wait time for scheduling appointments?
- What hospitals or cancer centers are you affiliated with?
- Do you have other office locations?
- Do you offer telehealth (or virtual) appointments?
- How knowledgeable is your staff about MPNs?
- What is the best way to contact you?
- How quickly will my phone calls be returned?
- What should I do if I need to contact you at night, on weekends, or on holidays?
- What kind of questions should I direct to you instead of my primary Healthcare Professional?