Tag Archive for: University of Kansas Medical Center

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. Andres Chang: Why Is It Important for You to Empower Patients?

Dr. Andres Chang: Why Is It Important for You to Empower Patients?

Dr. Daniel Ermann: Why Is It Important for You to Empower Patients?

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

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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Dr. Ronald Chen: Why Is It Important for You to Empower Patients?

Dr. Ronald Chen: Why Is It Important for You to Empower Patients? from Patient Empowerment Network on Vimeo.

 Empowering patients and care partners is key to helping them to make informed care decisions.  How can experts provide the right information about various options based on what matters most to the patient? Prostate cancer expert Dr. Ronald Chen with the University of Kansas Medical Center shares his approach to empowering patients so they can make the individual decision for them and their family.

See More from Empowering Providers to Empower Patients (EPEP)

Related Resources:

Dr. Silvina Pugliese: Why Is It Important for You to Empower Patients?

Dr. Yaw Nyame: Why Is It Important for You to Empower Patients?

Dr. Yaw Nyame: Why Is It Important for You to Empower Patients?

Transcript:

Dr. Ronald Chen:  

I empower my patients by giving them the necessary information, so that patients and their caregivers are empowered to make the best decision for them. I think for every cancer patient, there’s always a balance that’s struck between how aggressive the treatment should be, and also how important quality of life is to them. And every patient may make a different decision among the different options that are available.

So as a physician, giving patients the right information about the different options and about the implications in terms of side effects and quality of life and survival is so important, so that each patient is empowered to make the individual decision for them and their family.

How Can Prostate Cancer Disparity Gaps Be Overcome?

How Can Prostate Cancer Disparity Gaps Be Overcome? from Patient Empowerment Network on Vimeo.

 How can research bridge the gap in prostate cancer outcomes among different demographics?  Dr. Ronald Chen from University of Kansas Medical Center speaks to the work he and his colleagues are conducting around prostate cancer disparities and the different outcomes for different populations of patients who have the same diagnosis.

[ACT]IVATION TIP:

“My activation tip for this question is, my team’s research on how patients make decisions and the barriers has really led to a lot of insights that now allows us to implement programs to help tackle these barriers. And so I would advocate for any cancer patient to be willing to volunteer for a research study if one presents itself as an opportunity. It’s only through patients sharing their time and knowledge with researchers can we really learn about these critical issues, and then the participation will help future patients.”

See More from [ACT]IVATED Prostate Cancer

Related Resources:

Are There Worldwide Links to Aggressive Prostate Cancer?

Are There Worldwide Links to Aggressive Prostate Cancer?

Do Prostate Cancer Genetics Differ in African Americans?

Do Prostate Cancer Genetics Differ in African Americans?

How Can Advanced Prostate Cancer Care Barriers Be Overcome?

How Can Advanced Prostate Cancer Care Barriers Be Overcome?

Transcript:

Lisa Hatfield:

Dr. Chen, are there any ongoing or upcoming projects in your research group that aim to bridge the gap in prostate cancer outcomes between different demographic groups?

Dr. Ronald Chen:

Yes. One of my areas of research focus is prostate cancer disparities and the different outcomes, different groups of patients have with the same diagnosis. We know from a lot of research from my group and other groups, is that in prostate cancer, there are large disparities.

One example is that Black patients with prostate cancer have twice the mortality rate as white patients with prostate cancer. That’s been known for quite some time. But what causes some patients to die twice as much as others is not as much known. And I’ve done a lot of research to look at this area. Part of this mortality disparity relates to the understanding that some patients for some reason choose less aggressive treatment than others. So if you have an aggressive prostate cancer, but you’re choosing less aggressive treatment than others, then that may explain some of the higher rates of death.

And so what my group has done is to try to figure out why some patients choose less aggressive treatment and what that decision-making process looks like. I’ve had a large project where I have been following about 1,500 men with prostate cancer, it was a…what’s called an observational study where we enroll these 1,500 patients at the time of diagnosis. So as soon as they were diagnosed, we enrolled them and what we asked them is, “Hey, do you mind if we just follow you along with your course through treatment, through your survivorship course? We want to follow and just learn what you decide to do and why you decided to do it, and what your outcomes are.”

And for these 1,500 men, we have now followed them for about 10 years, really going through the journey with them and trying to learn as much as we can. And part of this study was when these men were making decisions about treatment, we were able to ask them a series of questions to really try to tease out, “Why did you choose this versus that? How did you make your treatment process?” And this was a very unique study because actually, there are very few studies that have went through the process of decision-making with men and trying to tease out what’s important to them.

What we learned from this research, from this study, from these men who volunteered their time with us, is that some patients who had pretty aggressive prostate cancer told us that their cancer was not aggressive. So we know by following these patients, we know from their medical records what their diagnosis was, and we knew how aggressive the cancer was. But when we asked these men to tell us what their perception was with their diagnosis, a portion of these men who had aggressive cancer told us that their cancer wasn’t that aggressive.

And we found that people who thought that their cancer was not aggressive, those were the patients who ultimately chose less aggressive treatment, because they didn’t think it was that important, it wasn’t that aggressive. And so, part of what we learned from this study was that a patient’s understanding of their diagnosis is a really critical factor in making the right decision.

Another piece that we learned from going through this process with these patients was that there was also a portion of the men who have financial concerns when they’re making the decision about treatment. Financial concerns relate to, “Well, I’m concerned that this treatment will impact my ability to work, I’m concerned about the cost of this treatment, I’m concerned about how this treatment will impact my family’s burden having to take care of me.” Those are all financial considerations.

And patients who had these concerns were also more likely to choose treatment that’s not as aggressive. And so we found out through this process, through these men sharing their decisions with us, that an accurate understanding of the diagnosis and some of these financial concerns really drove decisions of treatment for prostate cancer patients.

So now that we understand that, the question is, what is the next step? What can we do to help alleviate this problem? Because I think we can’t take away these concerns, and if patients have the right treatment, that will improve and optimize their outcome as well, and reduce disparities. 

And so part of what we’re doing here at University of Kansas is that we have really increased the availability of financial navigators and social workers for cancer patients. We know that a portion of cancer patients have financial concerns. We know that we don’t do as good of a job identifying patients who have concerns and then finding resources to help them.

Maybe it’s transportation, maybe it’s cost of treatment, maybe it’s the drug cost, and being able to identify these concerns early and finding resources to help would also, if we remove this barrier, then patients will be able to choose treatment that’s right for them without those concerns. And so, that’s one thing that we’re doing, now that we understand that’s an issue, we’re doing that to see if we can tackle and reduce this problem.

So my activation tip for this question is, my team’s research on how patients make decisions and the barriers has really led to a lot of insights that now allows us to implement programs to help tackle these barriers. And so I would advocate for any cancer patient to be willing to volunteer for a research study if one presents itself as an opportunity. It’s only through patients sharing their time and knowledge with researchers can we really learn about these critical issues, and then the participation will help future patients. And so, I would advocate for anybody to volunteer for research study, if that’s something they’re willing to do.

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