What role should a Primary Care Provider have for MPN patients?

[PupsBestFriends]

What role should a primary care provider provide for patients with MPN's? Obviously a PCP would address other health conditions that arise, but to what extent should a PCP be involved in tracking MPN patient symptoms or blood counts?

My MPN specialist orders monthly lab work to track my counts, prescribes my medication, and discusses my changing counts and treatment plan during our visits every few months. I am confident that they are knowledgeable of my PV and have provided the best course of treatment. However, they don't seem to thoroughly document the many significant symptoms I have. Our visits are brief and I try to mention the most debilitating symptoms, but we seem to quickly switch to other topics without any discussion about how these problems are preventing me from working and limiting my abilities of daily life.

I understand that I may have to endure these symptoms as a result of my disease, and am not necessarily looking for treatments or solutions. I do think it is important to have them documented so that future changes can be compared, and to have a medical record that accurately depicts my current condition.

Two years ago, before my PV diagnosis, I hadn't been to a doctor in many years and my previous PCP retired. Due to provider shortages I could only find one provider in my entire region who is accepting new patients and covered by my insurance. This provider is a physicians assistant and I am scheduled to have my first visit with them in 3 months.

I don't have any new medical concerns, so this visit is only to establish care. Should I expect this provider to document my current symptoms and discuss physical limitations? In absence of any other health concerns, would a yearly checkup be sufficient for an MPN patient with a high symptom burden? I would love to hear what other MPNers think about this, and what your experience has been.

[hunter5582]

It sounds like there are actually two sets of issues. What should the MPN Specialist do and what should the PCP do?

Most MPN Specialists do focus on all of the ways that MPNs can manifest. MPN care is as much about managing the symptoms that impact quality of life as it is about reducing risk of thrombosis or hemorrhage. Some people have reported problems with MPN care from regular hematologists who were less familiar with how MPNs manifest. It is really the MPN Specialist who is best equipped to help sort out what is MPN related and what is not. The MPN Specialist would refer you to the PCP or anther provider for non-MPN related issues.

The PCP does play a vital role in MPN care in various ways. We still can have a host of other medical issues when we have a MPN. Maintaining good overall health is vital to our care. Managing issues like cardiovascular risk factors is essential. It is not reasonable to expect a PCP (or other provider) to be fully up to date on a rare disorder like a MPN. It is quite common for us to need to inform many providers about MPNs and how our case manifests. PCPs play a vital role in our care in that they can help keep an eye on us a a whole person. Taking a holistic approach to our care is what the role of the PCP entails. PCPs can help us manage various issue an ensure that we see the specialists we need when that care is needed.

I am truly fortunate to have a wonderful PCP. He is one of the best docs I have ever seen. I also see an Integrative/Functional Medicine doc who he referred me to for consideration of complementary health interventions. General Practitioners play an essential role in MPN care. They help keep all of the body in order beyond what we experience with our MPNs.

All the best.

[PupsBestFriends in reply to hunter5582]

Hunter, you have clearly defined the question and provided a great answer.

While I hope my next PCP will make an effort to be aware of my MPN symptoms and conditions, it is the MNP Specialist who should thoroughly document, monitor, and treat my PV related issues.

I'm glad you have a great PCP, hold onto them dearly!

[charl17]

Some ideas: Make sure your PA is copied on all your bloodwork and gets reports on your visits with the specialist. When you see the PA share your thoughts on your PV symptoms and ask for his ideas on how you might manage them. You have cardiovascular risk whether your PA knows this or not. The PA should have a fasting lipid panel done along with referring you to a cardiologist for a work-up. Discuss your blood pressure. What is the state of your metabolic health? What are you eating? How are you sleeping? Overweight? Exercise? Is the PA alert to any signs of depression and does he know why he should pay attention to this? Understand your PV and your bloodwork and talk, talk, talk to the PA about what is on your mind. Since you must make this relationship work, invest time and energy in it.

[MPort in reply to charl17]

Hi Charl17 and pups best friends,From the info you appear to be in the US so Hunter's reply is relevant to US location. In the UK our 'PCP' care is at an all time low. However when it was good it was not able to provide any MPN care. After each hospital consultation they receive a letter summarising blood counts, symptoms and asking for any referral follow ups. MPN care is excellent at hospital level. I know the PCP read the letters because a few times they have called to book the CBC as next consultation will be phone one. I try not to be sarcastic but I am genuinely very surprised when the call. Maybe 3 times! But in 18 years they have taken no interest, never discussed the issues I had along the way and in fact they very little knowledge about PV. But that's OK. I know about PV and with the hospital we manage it satisfactorily. Being your own advocate, as Hunter frequently recommends is the way to go. Listen to all the MPN presentations, get to know as much as possible, and make the PCP work for you if and when necessary. And keep a record of your counts and symptoms on Excel if possible. While I would love to have a PCP like Hunter's as the reality is so different I have learnt to look after myself. So know you have options.

[PupsBestFriends in reply to MPort]

MPort, I can relate to your experience. My last PCP before my PV diagnosis was excellent. They listened, provided great treatment and referrals, and changed my life for the better. They're now retired.

I have seen numerous providers since my PV diagnosis, and it has been a mixed bag. Some were great, and I truly appreciate them. Others dropped the ball continuously. The genetic results from my BMB were forever lost. For 6 months I tried to get them from my hematologist at our visits, and even called medical records. I was always given some circular logic, and told they would "put a note in the system" to locate and call me. Never happened. Phlebotomies would take months to schedule because I had to wait for their scheduler to call me. The scheduler never had the orders in the system they needed to schedule. It had to be "approved by the charge nurse, pharmacy, and insurance first." Say what? I was literally looking online to see if I could learn phlebotomy, but a dizzy man poking himself with a large needle is never the answer.

Our PCPs are also stretched thin. I spent weeks calling every provider's office within an hour of my location, both large and small. They're are scheduled out over 6 months and have no waiting lists for new patients. In the end I was only offered one provider, and it was 4 months out!

So, we will be our own best advocates. Best wishes.

[PupsBestFriends in reply to charl17]

Charl17, thank you for your thoughts. I will absolutely make sure this PA receives all bloodwork and reports, and will spend as much time as allowed explaining my symptoms and how they affect my life.

I was referred to a cardiologist after my first hematologist, who was not an MPN specialist, said that my chest pain, shortness of breath, and dizziness could not possibly be caused by PV or the 2000mg of HU daily. My HCT was in the mid 50's and platelets were over 1000 at that time. After evaluation the cardiologist stated that my heart and cardiovascular health are excellent, and all of my symptoms are due to PV.

Best wishes.