Coordinated Care: MDS Research and Treatment Centers and Community Hematologists Work Together for Complete Patient Care | Aplastic Anemia and MDS International Foundation

Coordinated Care: MDS Research and Treatment Centers and Community Hematologists Work Together for Complete Patient Care

What does the term “coordinated care” mean, and what advantages may it offer for MDS patients?

There is really no formal, widely accepted defi nition or model for this term. But for most, the term “coordinated care” refers to delivering ongoing treatment near the patient’s home, by the patient’s local hematologist/oncologist. This treatment occurs under the guidance of MDS specialists at the larger, often academically based cancer research and treatment centers. There are several advantages to this arrangement.

Remember, MDS is rare disease and a community hematologist/oncologist may only see a few new cases in a year at the most, where here at Moffitt, we have an equal of amount of new cases in one week. In this scenario, patients are able to have their care planned and managed by experts who see and work with MDS on a daily basis, but are they able to maintain the relationship with their local hematologist/oncologists, superb clinicians who deliver the patient care--including the ongoing treatment of the disease, dealing with emerging side effects, and general observation. The advantage here is that patients do not have to make frequent trips to a major cancer center that could be far from their home for routine or standard treatment.

Is coordinated care initiated by patients, or must they wait to have it suggested and implemented by their care team?

It can happen both ways, and it certainly may be initiated by the patient. They can suggest to their local primary care physician or hematologist that they are interested in a second opinion from a specialist who sees many MDS cases. The local hematologist/oncologist often makes the original referral to the larger center to begin the process. This arrangement lets a patient benefit from work being done at the big cancer centers, but also keeps most of the patient’s time-consuming treatment local. Both sides should be in agreement that dividing the total care plan between the local physician’s oversight and the care of specialists is the best interests of the patient. At Moffitt, we have developed a unique relationship with our community hematologist/oncologists, where we see those patients early in the course of the disease and follow patients through the entire course, including certain milestones for major decisions on treatment, or for possible inclusion in clinical trials if standard care stops working. But the day-to-day treatments patients get occur near their homes. So this model originates both ways, but we encourage patients to suggest this if their local doctor does not.

What is the most common scenario for coordinated care? Do the medical professionals in each location have defined roles?

It is an informal model and can be adjusted or modified to suit the clinical needs of the patient. But generally, the patient should visit the academic center early in the process to confirm a diagnosis, particularly for a rare disease like MDS. Original diagnosis of MDS can be very challenging. There was a recent article in Blood highlighting the MD Anderson Cancer Center experience—reviewing pathology on MDS that comes from outside of the center at the time of first referral, and in 25 to 30 percent of the time, the diagnosis was changed or revised. Our center shares similar a experience. The specialized centers offer experienced hematopathologists’ review of diagnostic materials and advanced molecular testing. A crucial initial step is risk stratifi cation or staging to understand the exact risk of the disease, prognosis, and tailor the plan of treatment accordingly. At Moffitt, we apply several tools to allow this staging which often are not utilized in busy community hematology/oncology practices. Patients may get the opportunity to receive cutting edge novel therapies in the context of clinical trials upfront or down the road in their journey fighting this disease.

Finally, patients can be part of databases that track outcomes and ones that follow them through the whole disease process. Patients may allow scientists to study leftover material of routine tests like bone marrow aspirate and biopsy or regular blood tests which allows physician-scientists to learn more about the disease, explore and assess new treatments, and potentially benefit many other patients. So, the initial referral to a large center offers a lot of advantages. It allows us to confirm a prior diagnosis, make a plan, and be sure the patient knows about clinical trials that may be of interest. If the treatment plan is a standard one such as hypomethylating agents, patients can have this treatment locally, as well as the blood tests that are also required for monitoring this treatment. Then, at three or four months, they would return to the specialized center like Moffitt for an overall evaluation and assessment of treatment progress.

What parts of the testing, treatment, and evaluation process are commonly conducted at each location?

The initial diagnosis, specialized testing, proper and fi ne staging/risk stratifi cation, formulation of initial treatment plan, and the additional benefits of all this occurring within a larger pool of patients is what the large center does best. The ongoing (often every day) treatment, and supportive care— including transfusions, blood tests, and therapy for any side effects—are the parts of the process that occur locally, under highly qualified hematologist/oncologists. What each setting does is very important, and in most cases, it is an effective division of tasks needed to administer total care.

Are there any potential problems or complications that can occur when complete care is split between two locations?

These can happen if communication breaks down between the two locations involved in coordinating the care. Open communication between the community hematology/ oncologist and the referral center is essential for this arrangement to work correctly and to its best advantage. The local doctor has to receive information from the center in a timely manner. So both parties have a shared responsibility to see that information is communicated and received without delay. In almost all cases, a good working relationship develops. Sometimes, there have been confl icting recommendations between the local doctor and the experts at the large cancer center. This requires discussion between both parties so an agreement is reached. In these situations, sometimes there really is no single right answer— where there really are two options—requiring patients to decide what best serves their interests and meets their needs. I don’t believe that any problems result for fear of competition between the two locations. Both sides build a comfort level working with each other, whether over a single patient or group of patients, and this reduces any fear of competition.

What can a patient do to help communication between two separate facilities? Are there any warning signs to watch out for that might suggest that the coordinated care needs improvement or reevaluation?

This is by no means out of the patient’s hands. Patients can play a role in this by being engaged, by paying attention, and by making the decisions that they are required to make, based on the information that has been provided to them. They should be ready to bring the details of an appointment at one facility to the other, and of course, adherence to appointments is crucial so all follow-up appointments and testing during and after treatment is completed. There really are three parties involved, and each has to do their best to keep the others informed—the patient should not be passive bystander when it comes to the fl ow of information. If something seems missing, misunderstood, or contrary to expectation, the patient should bring this up right away.

As to warning signs, it all goes back to lack of communication between the three parties. For example, if the treatment plan is not consistently applied, or by the schedule agreed upon, this could indicate a problem. If treatment plans seem to change with no explanation, that could also be a red flag. The patient can be their own best advocate by seeing that both parties involved in the coordinated care are in touch and in agreement.

Is coordinated care an evolving treatment model that may be approached differently than it is today? What can patients expectuestion text?

Even though there is no formal protocol or model for coordinated care, it can be different in other countries—especially smaller European countries where distances are not as great as in the US. There you find specialized treatment centers which are often certain hospitals for particular diseases. There are only certain facilities that offer treatments for MDS and diseases like it.

This would not work as well in a country the size of the US and the practice of coordinated care in the US is better for the situation that exists here. As the field of oncology expands—several major new drugs a year being approved, and major advances in many areas within oncology, it can be difficult for a community hematologist/oncologist to keep up with every single new detail. But there are specialists like me and others here at Moffitt as well as other referral centers who focus on this particular area, so coordinated care lets us help the community hematologist/oncologist with the particulars of MDS, while they can deliver excellent care and administer a treatment plan to their patients with MDS. Community hematologist/oncologists are very experienced clinicians with wide knowledge and superb skills in dealing with many different diseases and no doubt can deliver
excellent care to the patients near home with assistance from experts at large referral centers.

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