Tag Archive for: Dr. Abdulraheem Yacoub

Dr. Abdulraheem Yacoub: Why Is It Important for You to Empower Patients?

Why is it important to empower patients? Expert Dr. Abdulraheem Yacoub from the University of Kansas Medical Center discusses his approaches to patient empowerment and the positive impacts that empowered patients benefit from. 

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Dr. Jennifer Brown: Why Is It Important for You to Empower Patients?

Transcript:

Dr. Abdulraheem Yacoub:

Your ability to provide the best care for your patients really takes a team, takes a village. It involves the physician, the nurses, and the pharmacists but visually also patient and caregiver involvement. The more my patients are informed, the more their caregivers are involved. The more resources come up for these patients, the more their decisions are being made with the more depth and considerations and usually leads to more productive and effective healthcare provision for these patients. I believe that patients being educated in about their disease about what they’re up against to be given a realistic prognosis and expectation is of great value. 

I think arranging for patients to attend patient symposiums to reach out for educational material to be encouraged to seek out second opinions or to enroll in self-advocacy groups is of great importance and of greatest value for these patients. Patients with MPNs will live with their diseases for the rest of their lives, and that might include through the careers of multiple oncologists. So as patients live with their disease long, they need to master the knowledge base for MPN and for the understanding of their disease as they carry the journey with their MPNs for their natural lives and until a journey to cure or control their disease. I certainly believe in that, and I believe it’s the mission for all doctors to promote patient empowerment and patient education and involvement in their care.

Holistic Health Strategies for MPN Patients: Integrating Nutrition, Exercise, Mental Health, and Preventive Care

 

Myeloproliferative neoplasm (MPN) expert Dr. Abdulraheem Yacoub discusses ways for MPN patients to make efforts toward optimal MPN, overall health and patient well-being, and proactive patient advice. 

[ACT]IVATION TIP

“…as they are seeking the best care for their MPNs, they should also seek the best care for their global health like in nutrition, exercise, psychological health, cardiovascular risk reduction, primary cancer screening, and prevention, all the preventative healthcare vaccination. So all the global health interventions that improve your health are absolutely necessary for patients with MPNs.”

See More From [ACT]IVATED MPN

Related Resources:

Prioritizing Quality of Life: Addressing Symptom Management Challenges in MPNs

Prioritizing Quality of Life: Addressing Symptom Management Challenges in MPNs

Exploring New Frontiers: Innovative Drug Combinations and Clinical Trials in Myelofibrosis Care

Exploring New Frontiers: Innovative Drug Combinations and Clinical Trials in Myelofibrosis Care

Empowering Patients: Enhancing Shared Decision-Making in Myeloproliferative Neoplasm Care

Empowering Patients: Enhancing Shared Decision-Making in Myeloproliferative Neoplasm Care

Transcript:

Lisa Hatfield:

Can you discuss any specific interventions or educational tools that have proven effective in improving symptom management and disease progression awareness for patients facing PV, myelofibrosis, or ET?

Dr. Abdulraheem Yacoub:

Patients who live with MPNs are in this for the long run, and this is a chronic health challenge they would have to endure over the rest of their lives. And having access to tools that improve their health in general is instrumental. So as we advocate always for good nutrition in any other disease all the concepts that apply to healthy living apply here very vividly. So healthy nutrition is important. We like to involve a dietician early on in our patients, although there is no specific diet that is uniquely specific for MPN, but there are certain dietary interventions that are globally of benefit to patients to be healthier. We also advocate for mental health and psychological health, and we involve our oncology psychologists to be partners with us on patients’ care and to tackle the challenges that they have to cope with as they live with a chronic cancer.

We also endorse exercise as a method of improving functionality, improving strength, improving emotional well-being, and also as a tool to battle fatigue and musculoskeletal pains. So really many of the concepts that stand correct to everybody with any chronic disease stand correct here, but the impact in MPN is a lot more profound, because those patients will live with the diseases for a long time. And all the tools that you have to improve your global health will also improve your cancer health. We’re also very strong advocates of primary prevention. So patients with MPN are at an adverse cardiovascular risk and interventions that improve cardiovascular health such as exercise, maybe seeing a cardiologist management of cardiovascular risk factors like hypertension, diabetes, hyperlipidemia can also improve the patient’s risk and reduce their MPN risks by lowering their other cardiovascular risks.

We also advocate for primary cancer prevention and screening. So patients with MPN should be also undergoing more meticulous cancer screening and prevention in order to be able to manage their…in the case of second primary malignancies to be able to address that a lot earlier in the course of those diseases and improve the patient’s odds of living a longer and healthier life. So really my [ACT]IVATION tip for patients is that as they are seeking the best care for their MPNs, they should also seek the best care for their global health like in nutrition, exercise, psychological health, cardiovascular risk reduction, primary cancer screening, and prevention, all the preventative healthcare vaccination. So all the global health interventions that improve your health are absolutely necessary for patients with MPNs.


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Navigating Disease Progression in MPNs: Strategies for Patient and Care Partner Awareness and Monitoring

 

Myeloproliferative neoplasm (MPN) expert Dr. Abdulraheem Yacoub explains MPN disease progression, the difficulties with assessing MPN progression, factors that play into determining progression, and proactive patient advice for when MPN re-evaluation might be needed.

[ACT]IVATION TIP

“…be able to be aware of the baseline and any change of baseline and when do you draw the line where you actually need to re-stage or re-evaluated the disease all together and decide if the patients have closed the line or have transformed or progressed that they need different care.”

See More From [ACT]IVATED MPN

Related Resources:

Prioritizing Quality of Life: Addressing Symptom Management Challenges in MPNs

Prioritizing Quality of Life: Addressing Symptom Management Challenges in MPNs

Exploring New Frontiers: Innovative Drug Combinations and Clinical Trials in Myelofibrosis Care

Exploring New Frontiers: Innovative Drug Combinations and Clinical Trials in Myelofibrosis Care

Empowering Patients: Enhancing Shared Decision-Making in Myeloproliferative Neoplasm Care

Empowering Patients: Enhancing Shared Decision-Making in Myeloproliferative Neoplasm Care

Transcript:

Lisa Hatfield:

Dr. Yacoub, how do you and your colleagues enhance patient and caregiver understanding of disease progression in all of the main MPNs, polycythemia vera, myelofibrosis, and essential thrombocythemia, and what strategies can be implemented to monitor and respond to changes in the disease?

Dr. Abdulraheem Yacoub:

The concept of disease progression is an evolving field and even among experts is still something we debate a lot on how to better communicate that and how to better define that. So it is a challenge even for the most skilled physicians who manage patients with MPNs. However, we all understand what progression is or, and we all understand when things are going great. It’s very much obvious that patients are doing well. And when patients are not doing well there often it’s because they’re progressing.

So we have a vague understanding of the concept of what is going well, what is not going well, but to actually be able to be granular and describe what exactly that means. There’s a lot of uncertainty and vagueness in the field. But my two cents on this is that patients should be aware of what is their normal and was, is their usual abnormal symptoms, their usual abnormal findings in the blood and the trends in how their blood, and their symptoms are evolving over time.

And when there is a sudden change in an adverse or unfavorable way in the symptoms or the blood numbers, that this is definitely a trigger to evaluate for progression. I think being self-aware and being educated about what to expect with your disease allows you to be more capable of detecting when disease is progressing. We also try to explain to patients what the range of progression could sound like. It could be a change in symptoms, could be a change in labs, a change in physical exam, a change in how the bone marrow biopsy looks like, acquisition of new DNA errors and mutations.

So there are many different forms of progression. But as long as patients understand the science, as long as we can communicate to patients what is the usual path of normal or expected outcome of the disease and what’s not expected and what’s not normal and what’s above normal, and the patients and their physicians can pick that up as it happens, that’d be the best way to the best [ACT]IVATION tip for those patients and providers is to be able to be aware of the baseline and any change of baseline and when do you draw the line where you actually need to re-stage or re-evaluate the disease all together and decide if the patients have crossed the line or have transformed or progressed that they need different care.


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Empowering Patients: Enhancing Shared Decision-Making in Myeloproliferative Neoplasm Care

 

Myeloproliferative neoplasm (MPN) expert Dr. Abdulraheem Yacoub discusses how he approaches shared decision-making with patients, benefits of shared decision-making, and how to be proactive in elevating your own care.

[ACT]IVATION TIP

“…you have to understand that your cancer is a disease you’re going to partner with for the rest of your life. And the more skilled and knowledgeable you are, the more you can get the best care you deserve and advocate for yourself and be able to communicate your challenges with your doctors and be a participating partner in your own care.”

See More From [ACT]IVATED MPN

Related Resources:

Prioritizing Quality of Life: Addressing Symptom Management Challenges in MPNs

Prioritizing Quality of Life: Addressing Symptom Management Challenges in MPNs

Holistic Health Strategies for MPN Patients

Holistic Health Strategies for MPN Patients: Integrating Nutrition, Exercise, Mental Health, and Preventive Care

Navigating Disease Progression in MPNs: Strategies for Patient and Care partner Awareness and Monitoring

Navigating Disease Progression in MPNs: Strategies for Patient and Care partner Awareness and Monitoring

Transcript:

Lisa Hatfield:

Dr. Yacoub, how can patients engage in shared decision-making with their healthcare providers to determine the most appropriate treatment approach for their myeloproliferative neoplasm? Whichever one that may be.

Dr. Abdulraheem Yacoub: 

Thank you. So I perceive my relationship with my patients as a partnership. I try to teach them, but I also learn a lot from them. Some patients keep up with newsletters and FDA approvals and press releases as much as, or better than any of the physicians that we work with. So, I think the more informed the patient is, the more able they are to contribute to their own well-being and to the improvement in healthcare. Many healthcare projects in the U.S. are led by patients and patient advocates. So the more involved patients are, the more aware they are of the moving parts in the field, the more they can contribute to their own improvement and their own health.

So my advice to patients is to be as involved as they can. And these are chronic cancers they will live with for the rest of their lives. So my [ACT]IVATION tip for these patients is that you have to understand that your cancer is a disease you’re going to partner with for the rest of your life. And the more skilled and knowledgeable you are, the more you can get the best care you deserve and advocate for yourself and be able to communicate your challenges with your doctors and be a participating partner in your own care.

Lisa Hatfield:

So when it comes to shared decision-making, is it very common for you to work with the patient and their local general oncologist for shared decision-making, or do you typically have a patient come talk with you, and then the patient takes the information back that they’ve learned from you to their local oncologist?

Dr. Abdulraheem Yacoub:

There are many phases and many methods of how we can collaborate with patients and their caregivers and their local providers and so forth. And this carries different forms. We see this a lot recently with the FDA approval of interferons and physicians who are in practice have not been trained to use that, and they all are interested in applying the new technology and using the new medicines in their patients. And they seek us. They actually send patients for us to co-manage so that they can learn from the process. So they’re very involved and they’re very curious and they want to learn the new medicines and how to use them and how to apply the new knowledge and how to interpret molecular results and so forth.

Everybody has a role to play. Community physicians who treat patients have a key role at delivering care to patients, patients also have a role at learning this. And our job is to teach patients and their doctors how to raise their levels to be able to to speak the same language, to be able to understand the same knowledge and to be able to contribute and make informed decisions. The more informed the patient, the more they can contribute and the more they can be active partners in the healthcare.


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Prioritizing Quality of Life: Addressing Symptom Management Challenges in MPNs

 

Myeloproliferative neoplasm (MPN) expert Dr. Abdulraheem Yacoub discusses common challenges in managing MPN symptoms, goals for improving patient quality of life, and proactive patient advice for optimal care. 

[ACT]IVATION TIP

“…you should be aware of your own health and your own health challenges and your symptoms, and you should bring to your doctor what is it that you’re bothered by. Some symptoms are a lot more challenging than others, like fatigue, fatigue, and bone pain. These are symptoms that are very resistant to many of our interventions. But that doesn’t mean we shouldn’t keep trying, and we should have an open communication between the patient and their doctors regarding methods to improve that, whether it’s drugs or non-pharmacological interventions or others that we can try for these patients.”

See More From [ACT]IVATED MPN

Related Resources:

Empowering Patients: Enhancing Shared Decision-Making in Myeloproliferative Neoplasm Care

Empowering Patients: Enhancing Shared Decision-Making in Myeloproliferative Neoplasm Care

Exploring New Frontiers: Innovative Drug Combinations and Clinical Trials in Myelofibrosis Care

Exploring New Frontiers: Innovative Drug Combinations and Clinical Trials in Myelofibrosis Care

Navigating Disease Progression in MPNs: Strategies for Patient and Care partner Awareness and Monitoring

Navigating Disease Progression in MPNs: Strategies for Patient and Care partner Awareness and Monitoring

Transcript:

Lisa Hatfield:

Dr. Yacoub, I’d like you to speak to some of the key challenges in managing symptoms based on the available treatment options. What are the most challenging symptoms associated with the different classic MPNs, PV, MF, and ET?

Dr. Abdulraheem Yacoub:

You know as we address patients with blood cancers ET, PV, and myelofibrosis, there are multiple priorities in these patients. One, we want patients to be safe and protected from the disease by lowering their blood counts to the right goal. For myelofibrosis, we want to achieve disease control by JAK inhibitors and reduction in spleen and consider curative therapy with bone transplantation. So the goals of care are multifaceted and multi-layered in these patients, but we always forget about the quality of life. So patients with ET, PV, and MF live with a high burden of constitutional symptoms that are non-relenting and they impact patients’ quality of life. They impact their psychological health and their physical health. They impact their personal lives and their professional careers. And we try as much as possible to mitigate that impact on patients’ lives and quality of life with the tools that we have. Our tools are imperfect.

Every time I go over all the things we can do, we can use hydroxyurea (Hydrea), interferon, JAK inhibitors, and then that’s it. And then we stop. And there’s really, we don’t have as many tools as we want. Of course, the field is getting better, we are getting better tools to help our patients, but we should always keep patients’ quality of life at the center point of healthcare. In addition to getting the objective metrics controlled, the counts in the right range, and the spleen the right size, we also need to make sure that what we’re doing to patients is also adding quality to their lives.

And my [ACT]IVATION tip for patients is that you should be aware of your own health and your own health challenges and your symptoms, and you should bring to your doctor what is it that you’re bothered by. Some symptoms are a lot more challenging than others, like fatigue, fatigue, and bone pain. These are symptoms that are very resistant to many of our interventions. But that doesn’t mean we shouldn’t keep trying, and we should have an open communication between the patient and their doctors regarding methods to improve that, whether it’s drugs or non-pharmacological interventions or others that we can try for these patients.


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Exploring New Frontiers: Innovative Drug Combinations and Clinical Trials in Myelofibrosis Care

 

Myeloproliferative neoplasm (MPN) expert Dr. Abdulraheem Yacoub shares updates about additions in MPN treatment options, expansions in combination treatment options, and patient advice for locating clinical trials. 

[ACT]IVATION TIP

“…keep up with the field through reliable sources of information that gives updates on clinical trials or by keeping up with clinicaltrials.gov website, which is a federally funded website that lists active and enrolling trials at any part of the country. And patients can look up their state or ZIP code and find clinical trials that are available to them in that area.”

See More From [ACT]IVATED MPN

Related Resources:

Empowering Patients: Enhancing Shared Decision-Making in Myeloproliferative Neoplasm Care

Empowering Patients: Enhancing Shared Decision-Making in Myeloproliferative Neoplasm Care

Prioritizing Quality of Life: Addressing Symptom Management Challenges in MPNs

Prioritizing Quality of Life: Addressing Symptom Management Challenges in MPNs

Navigating Disease Progression in MPNs: Strategies for Patient and Care partner Awareness and Monitoring

Navigating Disease Progression in MPNs: Strategies for Patient and Care partner Awareness and Monitoring

Transcript:

Lisa Hatfield:

Dr. Yacoub, can you speak to active clinical trials for patients facing MPNs that you’re excited about, and are there any potential drug combinations that could enhance the efficacy of existing treatments?

Dr. Abdulraheem Yacoub:

The field of myelofibrosis is ever-evolving and never boring. We have had a lot of revolutionary projects and programs over the last few years. So we’ve had a standard of care therapy that is single-agent oral pills or JAK inhibitors for nearly a decade now, but in the last five years, we’ve had three other approved oral agents. So really we’ve quadrupled our options in the last four years of oral agents, and that’s really great, but not good enough.

So we’re experimenting with combinations. There have been at least three large clinical trials with combinations completed, and many, many ongoing trials that are accruing. So for patients with newly diagnosed myelofibrosis, there’s many options of enrolling into a clinical trial program to access combination of cutting edge agents that can provide higher quality responses and higher quality benefit to these patients.

There are many clinical trials in the second-line setting after patients progress or after first-line therapy fails them. So there are agents that are of benefit for control of myelofibrosis beyond the first-line therapy, and now there’s also clinical trials with agents that can improve patients’ quality of life or symptoms or low blood counts. So there’s really a lot of evolving and powerful options that patients can qualify for a very exciting field of research. It is an overwhelming task to keep up with that even experts in myelofibrosis get overwhelmed with the evolving field of clinical trial portfolio for myelofibrosis.

My [ACT]IVATION tip for patients is to keep up with the field through reliable sources of information that give updates on clinical trials or by keeping up with clinicaltrials.gov website, which is a federally funded website that lists active and enrolling trials at any part of the country. And patients can look up their state or ZIP code and find clinical trials that are available to them in that area. So in-patients can actually take charge in this. And that’s my activate tip for them, is to be proactive at seeking these options.


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Overcoming Barriers: Ensuring Equitable Access to Myelofibrosis Care and Clinical Trials

 

How can barriers to optional myelofibrosis care be overcome? Expert Dr. Abdulraheem Yacoub discusses common barriers that patients encounter, support and financial solutions to overcome barriers, and proactive patient advice. 

[ACT]IVATION TIP

“…seek the best care at any time and in any place, and doctors and healthcare systems will support you. You have to ask for help, and if you ask for help, more often you’ll get more than if you don’t ask for help, and you have to advocate for yourself to get the best care that you can access.”

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See More From [ACT]IVATED Myelofibrosis

Related Resources:

Bridging the Gap | Enhancing Access to Specialized Myelofibrosis Care for Rural Patients

Bridging the Gap | Enhancing Access to Specialized Myelofibrosis Care for Rural Patients

How Can Rural Physicians Improve Myelofibrosis Identification and Referrals?

How Can Rural Physicians Improve Myelofibrosis Identification and Referrals?

Managing Myelofibrosis for Patients Living Far From Specialists

Managing Myelofibrosis for Patients Living Far From Specialists

Transcript:

Lisa Hatfield:

Dr. Yacoub, in the context of myelofibrosis, what are the key barriers to accessing optimal care treatments, including access to trials, particularly for patients in historically marginalized groups?

Dr. Abdulraheem Yacoub:

There are many barriers actually that I can see and I witness every day. One is the actual initial presentation. So a lot of patients have had objective abnormalities and symptoms and exam and laboratory results, and it took them an extended period of time to even reach a hematologist oncologist. And then even after they do that, the next barrier is the precision in making a diagnosis. Many patients make it to the doctor, but the diagnosis has not been refined or readdressed correctly. The diagnostic workup was not up to bar, and patients are not classified or diagnosed correctly. And then once the diagnosis is made correctly, the access to therapeutics is also a challenge.

So some of our therapeutics that are cutting-edge are actually very pricey. They require a lot of support and financial aid and financial assistance and involvement in the complex healthcare dynamics, including specialty pharmacy and pharmacists and social workers. And the more resources patients have at hand, the more resources their physician has at hand, the better access they will have to these drugs. So that’s another barrier is that this is not available to all patients equally and universally. And then beyond the standard approved therapeutics, clinical trials are also provided in centers of high volume in MPNs, and those are not distributed equally throughout the country. So there are regions in the country where patients have to drive many hours to get to the next MPN center of excellence.

And because MPNs are rare diseases, trials are not going to be open at large in all centers. So that’s another level of hardship and barrier to care for these patients. However, this should not really encourage a culture of lack of interest or complacency by doctors or by patients to accept status quo. I think my [ACT]IVATION tip for patients is that you should seek the best care at any time and in any place, and doctors and healthcare systems will support you. You have to ask for help, and if you ask for help, more often you’ll get more than if you don’t ask for help, and you have to advocate for yourself to get the best care that you can access.


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How Can Rural Physicians Improve Myelofibrosis Identification and Referrals?

 

How can myelofibrosis be better identified and referred by PCPs? Expert Dr. Abdulraheem Yacoub discusses strategies for rural myelofibrosis care, partnerships between hematology centers and community oncologists, and patient advice for optimal care. 

[ACT]IVATION TIP

“…to not ignore subtle clues in health. So for patients who have lived a healthy life, the new onset of symptoms or the new onset of laboratory abnormality that is not explained should trigger additional steps and should not be ignored. All health problems can be best managed early on and then delaying access to care, delaying workup is not in anybody’s best interest.”

Download GuideDescargar Guía

See More From [ACT]IVATED Myelofibrosis

Related Resources:

Bridging the Gap | Enhancing Access to Specialized Myelofibrosis Care for Rural Patients

Bridging the Gap | Enhancing Access to Specialized Myelofibrosis Care for Rural Patients

Overcoming Barriers: Ensuring Equitable Access to Myelofibrosis Care and Clinical Trials

Overcoming Barriers: Ensuring Equitable Access to Myelofibrosis Care and Clinical Trials

Managing Myelofibrosis for Patients Living Far From Specialists

Managing Myelofibrosis for Patients Living Far From Specialists

Transcript:

Lisa Hatfield:

Given how rare myelofibrosis is, how can primary care physicians in rural areas be better equipped to recognize and refer patients with suspected myelofibrosis?

Dr. Abdulraheem Yacoub:

Myelofibrosis is a rare malignancy that belongs to the family of myeloproliferative neoplasms. These cancers present with abnormal blood counts and increased constitutional symptoms. Many of those symptoms are not specific to myelofibrosis, and many of the laboratory abnormality is also not specific for myelofibrosis. So for a primary care physician, it might be a challenge to actually make that diagnosis or recognize the unique presentations of myelofibrosis. I think what primary care physicians should be very savvy about is to be aware of abnormal labs or abnormal symptoms and to try to refer the patients for a hematologist for initial diagnostic workup.

Further classification or the complexity of making the classification in the diagnosed myelofibrosis is probably above what a primary most primary care physicians are able to do because that would require molecular testing and a bone marrow examination and maybe imaging studies. And for that these will require the expertise of a hematologist oncologist. And I think the role of the primary care physician is to get the patient with the right trigger or the right abnormality to the specialist. And that will be a successful achievement from the primary care physician. And then what happens after that would probably require more involvement of the hematology oncology team and additional workup and referral to a tertiary center afterwards.

Lisa Hatfield:

I do have one follow-up question to that also. I have a type of blood cancer, not an MPN, but if I lived in a rural area, I would want to know, okay, my primary care physician referred me on, I’ve seen a hematologist, but I have a local oncologist, a general oncologist in my rural area. Would the specialist require me to go back and forth constantly to be seen in a different facility or is it possible that I could be seen by my general oncologist?

Dr. Abdulraheem Yacoub:

So there are many forms of partnership between centers that provide tertiary care along with the community oncologists and hematologists. And there are so many forms of how this can be conducted. And the main mission for us doctors is to provide the best care for the patients and also to provide good communication with their care team locally. And that really is a duty for every individual and all the parties involved in patient care.

So we would love to provide the best care for patients, but also through involving their local providers. This could be a one-time opinion with a tertiary center with a management plan that can be passed on to their local doctor. It could be a collaborative long-term relationship where patients have to see the tertiary center once a year and then their plan is updated every year with specific instructions and guidance to their local doctors. Or it could require more involved care with the tertiary center, especially if there’s a clinical trial that is needed or research options that are not available locally or therapeutics that are of high risk that cannot be delivered locally. Unfortunately, in some occasions, patients will have to drive or commute to the tertiary center on a regular basis.

Lisa Hatfield:

So there are many forms of such collaboration that happen, depends on the options, the treatments, and the needs.

Dr. Abdulraheem Yacoub:

My [ACT]IVATION tip is to not ignore subtle clues in health. So for patients who have lived a healthy life, the new onset of symptoms or the new onset of laboratory abnormality that is not explained should trigger additional steps and should not be ignored. All health problems can be best managed early on and then delaying access to care, delaying workup is not in anybody’s best interest.


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Bridging the Gap | Enhancing Access to Specialized Myelofibrosis Care for Rural Patients

 

How can specialized myelofibrosis care be enhanced for rural patients? Expert Dr. Abdulraheem Yacoub from the University of Kansas Medical Center discusses solutions to bridge gaps in myelofibrosis care and patient advice for improving self-education and self-awareness.

[ACT]IVATION TIP

“…seek knowledge through the online reliable platforms of education, try to enrich their experience and their awareness of their disease and their surroundings, and also increase their awareness of specialties and expertise in the region where occasionally they might have to travel or seek attention from an MPN center of excellence in order to seek the care that they deserve and they need.”

Download GuideDescargar Guía

See More From [ACT]IVATED Myelofibrosis

Related Resources:

How Can Rural Physicians Improve Myelofibrosis Identification and Referrals?

How Can Rural Physicians Improve Myelofibrosis Identification and Referrals?

Overcoming Barriers: Ensuring Equitable Access to Myelofibrosis Care and Clinical Trials

Overcoming Barriers: Ensuring Equitable Access to Myelofibrosis Care and Clinical Trials

Managing Myelofibrosis for Patients Living Far From Specialists

Managing Myelofibrosis for Patients Living Far From Specialists

Transcript:

Lisa Hatfield:

Dr. Yacoub, many patients live far from hospitals or clinics with hematology specialists leading to difficulties in accessing specialized care. What are the main barriers in addition to just the distance to accessing specialized care for myelofibrosis patients in rural areas?

Dr. Abdulraheem Yacoub:

Thank you very much, Lisa, for this. And access to healthcare is really a global concern in rural towns. And access to physicians in many subspecialties can be a challenge. It becomes an even more of a challenge in patients with rare diseases and rare cancers. So, MPN being a uniquely uncommon disease, it’s a disease that impacts younger, productive individuals who also have to have, maintain their work’s and family duties. It does compete with other priorities. So this compounds the access challenge for patients. Adding to that, is that even in patients with access to healthcare centers that are more sub-specialized, there are fewer MPN centers of excellence that can provide the service that patients deserve.

So this really compounds the challenge for patients with MPN. And this hopefully can improve with further improving access virtually to those patients or to use resources or platforms for self-education and self-advocacy that can connect patients to the experts that they require. So my [ACT]IVATION tip for patients is to seek knowledge through the online reliable platforms of education, try to enrich their experience and their awareness of their disease and their surroundings, and also increase their awareness of specialties and expertise in the region where occasionally they might have to travel or seek attention from an MPN center of excellence in order to seek the care that they deserve and they need.


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Five Tips to Participate in MPN Care and Treatment Decisions

How can myeloproliferative neoplasm (MPN) patients become more active in their care? In the “How Should You Participate in MPN Care and Treatment Decisions?” program, expert Dr. Abdulraheem Yacoub of the University of Kansas Cancer Center shares five key tips MPN patients can take for a more active role for optimal health outcomes.

1. Become a Patient Self-Advocate

It’s vital to have the ability to advocate on your own behalf no matter your age at diagnosis. And some MPN patients will be diagnosed at a relatively young age and will have different MPN care providers over the course of their disease. These patients need to get accustomed with the idea of care approaches changing over time.

2. Get Involved and Build Your Village

Being involved in your well-being as a patient is of utmost importance, and thinking about your support network is recommended as one of your early steps as a patient. Think about who among your friends, family, co-workers, and spiritual community might be able to help support you – and ask your MPN care provider about support resources if you need some additional help.

3. Bring a Friend or Loved One to Appointments

It’s important to have someone else at your appointments with you to help understand the information you receive and to also take notes and to ask questions if it’s helpful for you. Having a second set of ears is especially important with your early visits about treatment options, and the use of telemedicine makes it easier for loved ones to help support your appointments.

4. Get a Second Opinion

Second opinions are no longer the taboo that they were once perceived as. Listen to medical facts given to you from your MPN specialist and from your primary treating physician. And if you want a second opinion from another MPN specialist, this practice is easier to carry out now through telemedicine.

5. Seek Out Credible Resources and Research News

Keep yourself informed about the latest MPN research and treatment news by visiting credible online resources. In addition to PEN, check The Leukemia & Lymphoma Society (LLS) and MPN Research Foundation. The annual meetings of expert conferences like the American Society of Hematology (ASH) and American Society of Clinical Oncology (ASCO) bring research updates for MPN online resources to cover.

By taking a more active role in their care, MPN patients can help determine the best care and treatment plan for optimal health outcomes.

Expert Perspective: Hopeful MPN Research and Development

Expert Perspective: Hopeful MPN Research and Development from Patient Empowerment Network on Vimeo.

MPN expert and clinical researcher Dr. Abdulraheem Yacoub shares excitement about the future of MPN treatment and research, including an optimistic outlook for new approvals in the coming year. 

Dr. Abdulraheem Yacoub is a hematologist oncologist at the University of Kansas Cancer Center. Dr. Yacoub is an active researcher and is an Associate Professor of Hematologic Malignancies and Cellular Therapeutics. Learn more about Dr. Yacoub, here.
 
 

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Transcript:

Katherine:

I wanted to get your take on the future of MPN research and treatment. Are there new developments that you’re excited about and that make you hopeful?  

Dr. Yacoub:

Absolutely. So, again, I would like to take the last few minutes to advocate for the future. And the future can only come when doctors and patients and advocates work together to advance the science. We have few tools to treat patients and to help patients. We have a lot of unanswered questions. And the only way to answer them is by designing quality clinical trials, enrolling patients on trials, taking the risk, and trying to find new answers and new therapeutics. So, I always would like to advocate for patients to seek clinical trials whether with their doctor or whether they have to travel for it, and for doctors to consider that for their patients. That’s the only way to advance science.  

There are very important national and international studies going on right now. One of the – and first, I would like to emphasize is that we have had ruxolitinib (Jakafi) as the only therapy, or the first-line therapy for myelofibrosis for a decade now.  

Not everybody responds to it, not everybody responds to it for a long time. So, now we’re designing combination trials. So, there’s a few studies that we are trying to redefine, “Is ruxolitinib alone enough, or should we have a combination first-line therapy?” So, these are some of the more important questions being asked right now.  

And this is definitely one of the bigger moves in the field, is trying to redefine what is the first-line therapy for myelofibrosis. For polycythemia vera, we’re also exploring therapeutics that would reduce phlebotomy with things you can add to your medical care to reduce phlebotomy.  

So, that’s also going on. And it’s definitely a big leap forward for many of our patients. For ET, when we don’t have any actual drugs approved other than hydroxyurea (Hydrea) and anagrelide (Agrylin), we actually have trials with interferon going on.  

So, I would like to advocate for that. So, interferon succeeded and now approved for PV, but not yet for ET. We’re working on that. So, again, in every disease, we’re trying to design clinical trials to redefine what is the best treatment today.  

We’re also doing studies to understand the cancer. So, studies where patients donate their samples for research. These are very helpful, very important. And contributing to that always advances the science, and it’s low effort to the patients. So, if there’s a clinical trial that is offered to patients, I would strongly urge everybody to consider that favorably and contribute to science. 

That’s the only way we can help future patients and ourselves immediately, at moving the field forward.  

What Are the Signs of MPN Progression?

What Are the Signs of MPN Progression? from Patient Empowerment Network on Vimeo.

Dr. Abdulraheem Yacoub, an MPN specialist, explains how essential thrombocythemia (ET), polycythemia vera (PV), or myelofibrosis (MF) may progress from one disease to the next, including potential signs and symptoms of MPN progression. 

Dr. Abdulraheem Yacoub is a hematologist oncologist at the University of Kansas Cancer Center. Dr. Yacoub is an active researcher and is an Associate Professor of Hematologic Malignancies and Cellular Therapeutics. Learn more about Dr. Yacoub, here.
 

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What Are Treatment Options for Essential Thrombocythemia?

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What Are Treatment Options for Myelofibrosis?


Transcript:

Katherine:

We have a couple of questions from the audience. This one is from Sarah. She writes, “I’ve been living with essential thrombocythemia for three years, and have been relatively stable. Of course, I’m worried about progression to PV or MF. What is my chance of progression, and what are the signs of progression?” 

Dr. Yacoub:

That’s a very good question. And unfortunately, we’re very good at describing those numbers. Unfortunately, our tools at interfering are not as good. So, in general, patients with ET, statistically speaking, have a life expectancy that is not different from their age match peers. And Sarah’s story will be not too indifferent from her sisters and her mother, in terms of what’s going to happen to her long care and her health, provided she gets good medical care. The exception to that is that there is a transformation risk. For ET we caught around a 4 percent every 10 years in which ET will actually change into a different cancer, a higher risk cancer.   

Could be MF, could be MDS, could be acute leukemia. And that will be a much more serious diagnosis. So, it’s about 4 percent in 10 years. We do have a – or we extrapolate some of the data from other cancers. So, certain mutations are more favorable, certain mutations are more risky. And we try to forecast that but worried it’s really hard to predict that since it’s such a long journey with disease. The first symptoms or the findings, when patients start suspecting that their disease has changed, is that the pattern of symptoms that they have are different.   

They often become worse. So, they have more constitutional symptoms, more tiredness, more fevers, more night sweats, losing weight, not being able to eat a full meal, abdominal distension, the spleen gets bigger.  

So, these are some of the feelings that patients can experience that lead to this. Other objective things is when the blood tests change in a less favorable way. So, for patients with ET who always run at 800,000 platelet count, if they’re suddenly 200, and that’s in the normal range, but that’s actually not good news, because the cancer changed. And this change is not favorable. So, as the doctors run routine labs, if they see the sudden change in labs, that’s also abnormal.  

If the doctor can feel that the spleen gets bigger every time, that’s also concerning. If the patients suddenly have anemia or very high white cell count or immature white cells in the blood, that’s also a concern.  

So, that’s why it’s great or important to establish a baseline symptom burden.  A baseline spleen, a baseline bone marrow biopsy with mutation analysis, so that patients have a clear reference point to where they started, and if things change, they can always go back to that point and compare.  

How Should You Participate in MPN Care and Treatment Decisions?

How Should You Participate in MPN Care and Treatment Decisions? from Patient Empowerment Network on Vimeo.

Dr. Abdulraheem Yacoub, an MPN specialist, shares advice for patient self-advocacy and provides tips for participating in care and treatment decisions.

Dr. Abdulraheem Yacoub is a hematologist oncologist at the University of Kansas Cancer Center. Dr. Yacoub is an active researcher and is an Associate Professor of Hematologic Malignancies and Cellular Therapeutics. Learn more about Dr. Yacoub, here.
 

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Expert Perspective: Hopeful MPN Research and Development

Expert Perspective: Hopeful MPN Research and Development


Transcript:

Katherine:

Dr. Yacoub, what is the role of the patient in their care? When does shared decision-making come into play?  

Dr. Yacoub:

Absolutely. Patients are the drivers and the centerpiece of their health care. And patient self-advocacy is the most important tool. So, many of our patients are young, and they will live with their cancers a lot longer than many cancer doctors will practice oncology. And they will have many doctors. Statistically, each MPN patient will have multiple doctors throughout their career. And they will hear different derivatives. And the science will change. And they will be given different counseling over the time. And their disease will change.  

And they will have different needs as they go further. So, patients being involved in their well-being and their cancer care is important from the first day. And I always tell patients, “You need to start building your village from day one.” It is not just the patient, it’s your caregivers, it’s who else can help you.  

Who else can advise you? You might want to also invest in a friend or a spouse or a child, to come to you and listen to some of those discussions so that they can advise you later on, “Why are you making different decisions?” So, we encourage patients to be very involved early on, to build their own village, and to seek care. We routinely ask for second opinions. We want patients to always hear the story and hear the same story from another doctor so that they hear the range of how we word the truth and how we word the facts.  

And this way, they can have a better perspective. So, this is now a standard. Almost all patients should have two doctors, at least, the treating doctor and one doctor who’s an MPN specialist, who would give them another twist or another perspective to their health.  

So, and that is always important. And then there are very good references and online resources for patients to tackle in, such as this seminar and other good places where patients can seek more information. They also can go to a clinical trial to find out what are the ongoing clinical trials and advancements.   

There are structured patient symposiums nationally and regionally. So, and we strongly recommend that patients seek more opinions and more help and more resources and be very engaged with this disease, especially that it is a chronic cancer, and it’s not going to – 

Katherine:

It’s not going away. 

Dr. Yacoub:

It’s just a new lifestyle. And they need to be as engaged with it as they can.   

Advice for Choosing MPN Therapy: What’s Right for You?

Advice for Choosing MPN Therapy: What’s Right for You? from Patient Empowerment Network on Vimeo.

MPN specialist Dr. Abdulraheem Yacoub reviews factors that determine which treatment is most appropriate for your essential thrombocythemia (ET), polycythemia vera (PV), or myelofibrosis (MF). 

Dr. Abdulraheem Yacoub is a hematologist oncologist at the University of Kansas Cancer Center. Dr. Yacoub is an active researcher and is an Associate Professor of Hematologic Malignancies and Cellular Therapeutics. Learn more about Dr. Yacoub, here.
 

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How Treatment Goals Impact MPN Treatment Decisions

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Expert Perspective: Hopeful MPN Research and Development

Expert Perspective: Hopeful MPN Research and Development


Transcript:

Katherine:

As with most conditions, all patients are different, of course, and what might work for one person might not be appropriate for another. So, how do you choose which treatment is right for a patient?   

Dr, Yacoub:

Excellent. So, and that’s actually the heart of what we define as the art of practicing medicine and being patient-centric and focused. And patients already have their own wishes and their needs. And everything should start with having a discussion with patients on what is their priority, and what are they trying to achieve.  

And we do have to explain to them the tools we have, the interventions that can help them. But we also need to make sure they’re compatible with what they actually want and their goals in life. And sometimes what we doctors want is not exactly what the patients want. So, we always have to remind ourselves that patients are the drivers of their care. And they have the absolute right to be informed and to make informed decisions based on the options we advise them about.  

So, that is always a centerpiece of healthcare. And then patients – basically, we defined four pillars of care. We want to control their symptoms, we want to prevent complications, we want to modify the disease so it doesn’t transform, and we want our therapies not to have toxicities, not to have side effects that are worse than the disease.  

So, we bring that up to the table. And we also look at the patient. What are their symptoms? What did the disease cause them to be complications?  

What is the risk that their cancer is actually going to progress quickly to hurt their lives? And how serious is the therapy we’re recommending? And we need to make sure that there is a good match between what we’re offering and what the disease is manifesting. So, for example, for patients who have a lot of symptoms, but they have low-risk cancer that they can live with for a long time, we focus on symptoms. We focus on treatments that improve their symptoms.  

While with patients who have more serious diseases that are eminently life-threatening, we focus on an expedited path to a more aggressive therapy and a bone marrow transplant.  

And then we also try to match those therapies with the other patient’s wishes and needs and so forth. So, all these factors are important. We have more tools to try to prognosticate. So, prognosticate is the medical word that we use as forecasting.  

We like to forecast the disease or the cancer. We try to predict the patient’s future. Fortunately, we actually have good tools to prognosticate now. We have models or calculators that factor in patients’ features, their symptoms, their age, their blood counts, their bone marrow findings, and their DNA mutations. And it gives us a score, a risk score that can correlate with their life expectancy or their outcomes.  

And we use those tools to guide us. So, there’s actually a tool we use to help patients reach that decision. It’s an objective tool to decide how serious is this disease and how seriously we should tackle it. It’s very applicable for patients with myelofibrosis, more sort of the other lower-risk cancers.  

Katherine:

What about comorbidities? How do they fit into the treatment plan?  

Dr. Yacoub:

Very important.  

So, again, it also goes back to finding the balance between how serious is the disease, how serious is the treatment, and how will the patient’s general health tolerate and factor in the choices patients make accordingly. So, myeloproliferative neoplasms do happen in a broad range of ages. And we have children, minors with MPNs, and we have elderly patients with MPNs. And it’s a continuous spectrum. And each individual patient will have their own health concerns and their own health comorbidities and their own wishes. And we always have to make sure that we match our therapies, the disease seriousness, and the patient’s wishes, which is also stemming from their own other health battles, too.  

We cannot turn a blind eye to the other health issues going on. That plays a major factor as we choose to discuss bone marrow transplantation with patients. Because that’s when the medical comorbidities are often the first barrier to go through.  

Katherine:

Are there specific biomarkers that may affect prognosis or treatment?  

Dr. Yacoub:

Yes. So, and we’re glad that actually myeloproliferative neoplasms are actually the model in medical oncology on how predictors can tell us a lot more about the patient’s future about the prognosis. So, early on in MPNs, we’ve developed models, like the International Prognostic Scoring Systems in many different iterations. And more recently, the Molecular Based International Prognostic Scores.  

They factor in patient’s age, they factor in blood numbers, they factor in DNA abnormalities, they also factor in DNA mutations, including the common driver mutations JAK2 and CALR and MPL, as well as more novel mutations that we call higher risk mutations.  

So, based on these models, we use these tools to predict how the cancer will behave, and how to approach it. This advancement has been an application for our MPN patients for a while, way ahead of all other fields of oncology. So, we’re proud that we can give our patients this tool before all other doctors were able to. Yeah.   

What Are Treatment Options for Myelofibrosis?

What Are Treatment Options for Myelofibrosis? from Patient Empowerment Network on Vimeo.

MPN specialist Dr. Abdulraheem Yacoub shares and overview of treatment options, including therapies in development, for patients living with myelofibrosis (MF).

Dr. Abdulraheem Yacoub is a hematologist oncologist at the University of Kansas Cancer Center. Dr. Yacoub is an active researcher and is an Associate Professor of Hematologic Malignancies and Cellular Therapeutics. Learn more about Dr. Yacoub, here.

 
 

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How Treatment Goals Impact MPN Treatment Decisions

How Treatment Goals Impact MPN Treatment Decisions

Advice for Choosing MPN Therapy: What’s Right for You?

Advice for Choosing MPN Therapy: What’s Right for You?

How Should You Participate in MPN Care and Treatment Decisions?

How Should You Participate in MPN Care and Treatment Decisions?


Transcript:

Katherine:

And since myelofibrosis is a progressive condition, I imagine it’s more difficult to manage. So, what else is available for patients with myelofibrosis?  

Dr. Yacoub:

Correct So, myelofibrosis is the higher end of this spectrum of cancers.  

It is a cancer that is associated with much higher symptom burden and impact on daily life. It is also associated with low blood counts, and some patients will require transfusions. It’s a major morbidity to our patients. And in addition, it’s a cancer that is associated with shortened life. So, patients with myelofibrosis will not live as long as their health would have allowed them. And some of them will live actually a much shorter life than they want or deserve.  

So, myelofibrosis treatment requires a lot more considerations. So, for patients who are in good health, who have a cancer that is more aggressive, that would be imminently impacting their longevity, we start a discussion about a curative role of allogeneic stem cell transplantation very early in their course.  

Because bone marrow transplantation can be curative, and those patients can live a long life after a successful transplant. So, this is a treatment modality that should be brought up very early for patients with higher risk myelofibrosis. There are approved JAK inhibitors, ruxolitinib (Jakafi) and fedratinib (Inrebic). And we know that ruxolitinib which has been approved for over 10 years can improve symptoms, can improve the spleen volume, can actually prolong lives for patients on it, and also makes the transplant more successful.  

So, we should be offering that to the appropriate patients also early in their diagnosis, in a strategy where, in addition to that, we get them to a transplant. Fedratinib is approved in that setting. And we are very optimistic that by the end of this calendar year, we will have two other JAK inhibitors approved.  

[Editor’s Note: As of February 28, 2022, pacritinib (Vonjo) has been approved for the treatment of myelofibrosis patients with severe thrombocytopenia.] 

So, we look forward to those two drugs. Momelotinib and pacritinib for patients with special disease features. And hopefully, by the end of this year, we will have a list of JAK inhibitors that we can choose from, which is great news for our patients.  

Katherine:

Oh, we’re still fighting. 

Dr. Yacoub:

Yes, absolutely.