Tag Archive for: social workers

Overcoming Barriers in Myelofibrosis Care: Challenges Faced by Patients and Providers

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Overcoming Barriers in Myelofibrosis Care: Challenges Faced by Patients and Providers from Patient Empowerment Network on Vimeo.

What are key myelofibrosis barriers and solutions for healthcare providers? Experts Dr. Raajit Rampal from Memorial Sloan Kettering Cancer Center and Dr. Jeanne Palmer from Mayo Clinic discuss common obstacles to myelofibrosis care and methods they’ve used to overcome barriers including collaborative care tips.

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HCP Roundtable: Breaking Through Myelofibrosis Practice Barriers

 Explaining Myeloproliferative Neoplasm Disease Progression to Patients

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Transcript:

Dr. Nicole Rochester:

Dr. Palmer, can you speak to some of the obstacles or barriers faced by healthcare providers themselves when treating myelofibrosis patients?

Dr. Jeanne M. Palmer:

I think one of the challenging pieces, you know, I know in Arizona, we have a pretty big catchment area, because there’s not only the Phoenix metropolitan area, but there are a lot of smaller communities scattered throughout Arizona. And I think one of the issues that we have is, let’s say I want to start somebody on a new medication that potentially has a side effect of anemia or something. Being able to manage them remotely is difficult, because a lot of times they may require a blood transfusion. Can they even get a blood transfusion where they’re at? Can they afford the 5-hour drive down to Phoenix to get that? So I think sometimes, even access to simple things, well, I guess it’s not that simple, but things like blood transfusions can be hard. Fortunately for labs, you’re often able to get them most places through various Labcorp, Quest, et cetera. But sometimes any type of infusional treatment can be really, really hard to get.

Dr. Nicole Rochester:

Thank you. Do you have anything to add, Dr. Rampal, with regard to barriers faced by providers?

Dr. Raajit K. Rampal:

No, I actually think that’s an important, that’s a really important thing. Because it depends on your area of the country and what access to resources patients have locally. If we’re thinking about this as sort of a hub and spoke model, that may be the outdated model. In other words, it’s not that people can afford to, you know, from a financial perspective or a time perspective, come into the major center and then go back. They need to get access to care locally, but you have to have the infrastructure, the healthcare infrastructure, if you will, to deliver that care. And that’s a difficult problem in many parts of the country.

Dr. Nicole Rochester:

Dr. Rampal, can you speak to unforeseen or maybe outdated practice-related barriers that may hinder your work and that of your colleagues with regard to myelofibrosis treatment?

Dr. Raajit K. Rampal:

Yeah, I guess my broad answer to this is that things are changing rapidly and the pace of change is accelerated. In other words, when we think about myelofibrosis, the treatment paradigm probably, if you think about the last 15 years, in the early part of that, things were kind of relatively static and now they’re not as new knowledge emerges, as new treatments emerge. And the challenge here, again, speaking in general terms is, as Dr. Palmer pointed out, this is a rare disease. It’s not something that’s frequently seen by physicians in the community. So how do you keep people up to date on something that is not the majority of what they do? It’s a very small percentage of what they see and do. And that’s an ongoing challenge. And I’m not sure there’s any perfect solution to that except for education. It’s just a question of how do you deliver that in a time-effective manner so that people can devote some time to getting up to date? But it is ultimately a good problem that things are changing rapidly.

Dr. Nicole Rochester:

Absolutely. And, Dr. Palmer, do you have any solutions or actions or things that healthcare providers can do as this treatment landscape rapidly evolves?

Dr. Jeanne M. Palmer:

I think it’s a real challenge because even when we look at sort of the dogma of like, well, what’s the response criteria? I mean, when you’re thinking of a lot of like solid tumors, you think, okay, did the tumor shrink a certain amount? Did the tumor go away? With myelofibrosis, when we think about even response criteria, it’s really challenging. So I think I agree education is part of it, and it’s trying to figure out how to distill down the really important components of how do you manage these patients day-to-day? We can talk about the COMFORT study and the MOMENTUM study and everything else all we want to, that tested, were major studies that tested the drugs that we use, but then the nuances of how to manage them day-to-day is something that I think we could probably improve upon how we educate.

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Bispecific Antibody Therapy Support | Care Team Members and Resources

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Bispecific Antibody Therapy Support | Care Team Members and Resources from Patient Empowerment Network on Vimeo.

What should myeloma patients know about bispecific antibody therapy support? Nurse practitioner Alexandra Distaso from Dana-Farber Cancer Institute discusses care team members and support resources for bispecific antibody therapy patients and care partners. 

Alexandra Distaso, MSN, FNP-BC is on the Multiple Myeloma Nursing Team at Dana-Farber Cancer Institute.

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 Bispecific Antibody Therapy | Managing Side Effects

Bispecific Antibody Therapy | Managing Side Effects

Transcript:

Katherine:

Besides yourself, what other staff members can care partners turn to for support?  

Alexandra:

So, at our office, we have an amazing group of triage nurses who are available Monday to Friday all during office hours. We have after-hours. If your patient or family member spikes a fever and you’re worried they just don’t look good, there’s always a doctor on 24/7 that you can page to kinda ask for advice and see what to do from there. And again, we have infusion nurses who are giving these injections every day.  

And they are wonderful resources on what you might feel later in the day, what that site might look like, side effects that might pop up. So, really, anyone wants to be there to answer questions to make it easier for the patient or the family.  

Katherine:

Are there social workers or psychologists on the team as well?  

Alexandra:

Yes. We have an amazing group of social workers at Dana-Farber. And one thing that I really like about the way our program is run is that we have a social worker who is dedicated specifically to myeloma. So, they’re very familiar with these medications and the hospitalization requirements, which can be extremely tough. And so having resources and just someone to talk to, both through social work and our psychosocial oncology department, is also a wonderful resource to have.  

Katherine:

What about online resources? Do you have any recommendations?  

Alexandra:

So, I think that the IMF, the International Myeloma Foundation, and the NCI, have amazing resources for patients.  

Actually, the IMF has an entire caregiver support page with kind of caregiver self-help, and ways that you can care for the patient. Care for the caregiver, and care for the patient. I think the MMRF has wonderful resources, and they also have a lot of online forum videos about bispecific antibodies and the different treatments for myeloma that are available if you want to learn more. And then same thing with The Leukemia & Lymphoma Society. Excellent resources online. 

Myeloma Support and Resources | Why It’s Essential to Voice Your Concerns

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Myeloma Support and Resources | Why It’s Essential to Voice Your Concerns from Patient Empowerment Network on Vimeo.

Why should you speak up when it comes to your myeloma care? Dr. Sikander Ailawadhi discusses the importance of sharing issues with your healthcare team in order to access support and resources that can help. 

Dr. Sikander Ailawadhi is a hematologist and oncologist specializing in myeloma at Mayo Clinic in Jacksonville, Florida. Learn more about Dr. Ailawadhi.

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Transcript:

Katherine:

I would like to talk more about self-advocacy, Dr. Ailawadhi, managing the worry associated with a diagnosis, concerns about relapse, side effects. It can lead to emotional symptoms like anxiety and fear for many. So, why is it important for patients to share any worries they’re having with their healthcare team?   

Dr. Ailawadhi:

Yes.  Extremely important. See, nobody’s thinking, “Okay, I’m going to have cancer today.” Nobody’s prepared for it ever. Cancer is always a diagnosis that comes out of the blue, blindsides us, and then suddenly we have to change the rest of our life because of it.  Not only our life, our caregiver’s life, family’s life, everything changes.  

So, it is okay to admit that it is difficult. It is okay to admit that we need help. And, Katherine, I like your kind of the use of the word, self-advocacy, although I want to qualify it.  

A lot of times we say patients got to be their own advocates. But if a patient doesn’t know what to ask, they’re going to be lost. My thought is it is okay to – the first and foremost that a patient or their caregiver can do is please report your symptoms or how you’re feeling.  And those symptoms could be physical, those could be psychological.  Please report what are you feeling, what are the symptoms. On a drug, what are the side effects, et cetera, so that your healthcare team can try to address them. Don’t ever assume, “I am on chemotherapy. I should have diarrhea.”  No. Don’t think, “I’m on chemotherapy. Other patients outside in the waiting room look sicker than I. I feel embarrassed to ask a question.”  

We hear this so many times. A lot of patients will say, “I feel embarrassed to ask that I’m going through this symptom, because I see sicker people outside.” Yeah, but know when I’m with you as a patient, you are it. I’m not thinking about anybody else. And I don’t want anybody else’s decision to obscure or cloud our relationship at that visit.  Please report your symptoms. Please ask for help. 

To me, that is good enough self-advocacy. Self-advocacy is not saying, “I should get this treatment, not that treatment.” But self-advocacy could mean, are there clinical trial options?  I know I live far away from a large center. Could I get a tele-visit with a large center? Could I get a second opinion from someone? Those are all very, very reasonable questions, and by asking those questions, a patient is advocating for themselves.  

Katherine:

As you alluded, there’s a whole healthcare team working with each patient, and there’ll be people on that team who can help support a patient’s emotional needs.  So, one thing that’s on the mind of many viewers is the financial aspect of care. And you mentioned that earlier everyone’s situation is different, of course, but where can patients turn if they need resources for financial support?  

Dr. Ailawadhi:

Very important question. I can tell you every day when I come into my office, my nurse has a stack of documents ready for my signature.  Every single day. Today, there was only one, but there could be different numbers. And these are generally from foundations from diagnosis confirmations, et cetera. Things that we are filling on and signing on behalf of our patients so that they are able to receive resources, whether it’s from a pharmaceutical manufacturer, a foundation, or society that has funding available, et cetera. I should start by saying, Katherine – and I feel embarrassed to admit this, but I should start by saying, I may not have all the answers for my patient during that visit.   

But I think the very important piece where we can start is asking the patient, “Is this causing any financial strain on you?”  As I mentioned earlier, we don’t think about, “Oh, I’m going to have cancer today. Let me prepare for that.” Or “I’m going to have cancer five years down the road. Let me prepare for that.” We’re not always ready for this. It’s okay. It’s important for me to ask if there is a problem, and it’s important for the patient to admit there’s a problem or say, “Well, I’m having difficulty with copayments.” And whatever may be difficult for one may be okay for the other. So, I shouldn’t assume.  So, that discussion must happen.  

Generally, in our setup, what happens is if the patient brings up a concern, if I identify a concern, or if we think something may be going on, but we’re not very sure about it, we tend to bring in our social workers. The social workers are typically the ones who are able to do that discussion with the patient, talk about what are the resources available. What are the foundations that we can apply to?

We have patient navigators who can do the similar things. So, the patient navigator, social worker, there are different individuals who will be able to provide much more granular information. I also strongly suggest patients to join support groups.  

There are lots of resources, which I may not be aware of during our visit with a patient, but I can connect to the social worker, their patient navigators, and online support.    

Explaining Myeloproliferative Neoplasm Disease Progression to Patients

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Explaining Myeloproliferative Neoplasm Disease Progression to Patients from Patient Empowerment Network on Vimeo.

What is the best way to explain disease progression to myeloproliferative neoplasm patients? MPN experts Dr. Gabriela Hobbs and Natasha Johnson share advice on how they work with patients and families to clearly explain disease progression.

Dr. Gabriela Hobbs is a hematology-oncology physician specializing in the care of patients with myeloproliferative neoplasms (MPN), chronic myeloid leukemia, and leukemia. Dr. Hobbs serves as clinical director of the adult leukemia service at Massachusetts General Hospital and is an assistant professor at Harvard Medical School. 

Natasha Johnson, is an Advanced Oncology Nurse Practitioner at Moffitt Cancer Center, where she cares for people living with MPNs with kindness, patience, and humanity. Natasha also speaks at conferences to educate other healthcare professionals about MPN care, research, and treatment. 

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Transcript:

Nicole Rochester, MD:

I wanted to shift again and start to talk about specifically disease progression. And we know that that is, unfortunately, something that is an important element of MPNs. And so as we talk to fellow MPN specialists, what are you all’s recommendations for how they can best explain disease progression to patients? Are there any specific languaging or specific tactics that you all use, and even things that maybe you shouldn’t say as you are sharing information about disease progression? Either one of you, feel free to go first.

Gabriela Hobbs, MD:

So disease progression, I think is a really challenging topic, because on the one hand, I think it’s really important to educate patients. It’s really important for patients to know that that is a possibility, that it is something that can happen. It’s really challenging to have a patient that has lived with this disease for a long time, hardly even knows the name of that disease. Maybe they were seen elsewhere, etcetera, and then all of a sudden, something’s going wrong and they just weren’t prepared for that. But I feel like that really does need to be balanced by the fact that, thankfully, progression happens infrequently. And so you also…going back to what we were saying before, you want to help a patient to be able to live well with these diseases and not be defined by those diseases. And so one of the things that I try to do with patients is, especially during that initial visit, I spend some time explaining to them what the disease is, that it can progress to myelofibrosis, that it can progress to leukemia. But then I also try to reassure them as much as possible that this is an infrequent event, that the reason why we follow patients in-clinic is so that we can start to notice if there’s disease progression, that it usually happens gradually.

And then I try to say, “You have this information. We can’t necessarily change that at this moment, there are maybe some tools that we can use in the future, but try to put that information in a box in your brain, put the key, put it away, try not to think about that every day when you’re outside of here. Definitely okay to open that back up when you’re with me in the room. If you want to get those anxieties out, that’s fine, but let’s really try to make sure that that’s in the back and not at the forefront of our thoughts.” And kind of going back to one of the things we were discussing before about what the patient thinks is most important, what the clinician thinks is most important. If you ask patients what are they most concerned about with their MPN, oftentimes that response is, “Is my disease going to progress?” And so I think acknowledging that and talking about that is important, but then also reminding patients that over time, they need to, hopefully with your help, or maybe they need additional assistance with therapists or social workers, etcetera, let’s find a way to put that away so that it’s not really at the forefront of our thoughts every single day, because that also ends up being not productive.

Nicole Rochester, MD:

I love that approach, of providing the education, but also that balance that you talked about, Dr. Hobbs. I love the idea of putting it away, putting it in a box [chuckle] and locking it, and then opening it back up when you’re in the safety with your healthcare provider. That’s beautiful.

Do you have anything to add to that, Ms. Johnson? 

Natasha Johnson:

I completely agree. Your example there of putting it in the box, I’m going to use that in clinic. [laughter] I think it’s a great visual for patients. Because like you said, they’re very scared, and it can control them and take over, and we don’t want the disease to take over their life. Still live. Enjoy. 

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How to Locate Prostate Cancer Clinical Trials and Improve Awareness

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How to Locate Prostate Cancer Clinical Trials and Improve Awareness from Patient Empowerment Network on Vimeo.

 How is prostate cancer impact different for some populations? Watch as experts Dr. Yaw Nyame and Sherea Cary share the benefits of clinical trials, reliable clinical trial resources, and how clinical trial participation rates can be improved for better care.

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Transcript:

Sherea Cary: 

What advice do you have for prostate cancer patients about locating a clinical trial? Where can you find one? 

Dr. Nyame: 

Clinical trials tend to happen at the big cancer centers and the big academic university centers, although many of those programs will have affiliate partners out in the community. The easiest way to learn about clinical trials is to start by asking the physician that’s treating you for your prostate cancer, oftentimes, they’ll have resources and connections to the trials directly or are the people who are administering them. However, other great sources are going to be patient advocacy networks, and there are many of them for prostate cancer, there’s one…there are several. I’ll start naming a few. They have the Prostate Cancer Foundation, you have Us TOO, you have Zero Cancer, you have a PHEN, Prostate Health Education Network, which is an advocacy group for Black men with prostate cancer. So, these are all great sources of finding out what clinical trials exist, and in addition, you can just get on the Internet and Google if that’s something you have access to. The trick is navigating all the information, and I think knowing what trials are available for you, whether you qualify, that kind of thing can be difficult, and that’s ultimately where finding a provider, whether it’s your direct urologists or radiation oncologist or whoever is helping treat your prostate cancer, either them directly or sometimes seeking a second opinion, and going to a place where you might find someone who has some expertise in trials, if that’s something that you’re interested in. 

Sherea Cary: 

My father participated in a clinical trial, it was going on, I think the time of his treatment, and it was offered to us, and he was at a big facility here in Houston that offered…ask him if he wanted to participate. We did a lot of research. We said we’d try it. And we were glad to be able to participate. I participated in clinical trials also for different health conditions, because I believe it’s important that we have to participate in order for our people to gather the information that’s necessary. So, thank you for that. 

Dr. Nyame: 

Absolutely, you know I think there are a lot of reasons that we think that our Black community, for instance, may not participate in a clinical trial given the history of medical experimentation and various forms of abuse that have existed in our history. But what I recently heard from our partner of our community partners at PHEN, when they surveyed Black men about prostate cancer clinical trials, was that although there was some concern about trust in the history, that the overwhelming majority of the men wanted to participate, but they never were asked. And that’s really stuck with me, and I think that Black men are under-represented in clinical trials, and we have to find ways to be more inclusive and understand what barriers might exist into participation so that we can have that data to care better for the population. 

Why Is Prostate Cancer Often Referred to As a Couples’ Disease?

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Why Is Prostate Cancer Often Referred to As a Couples’ Disease? from Patient Empowerment Network on Vimeo.

Prostate cancer is often referred to as a disease of couples, but why is that? Watch as expert Dr. Yaw Nyame shares the impact of social support on prostate cancer outcomes and ways that family and friends can help with prostate cancer care.

See More From Best Prostate Cancer Care No Matter Where You Live

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Transcript:

Sherea Cary: 

So, some people may consider prostate cancer a couples’ disease. What advice would you give to a care partner? My father was a prostate cancer survivor, my mother was very supportive of him, but I took much of the lead as far as being his caregiver and coordinating things between my father, his doctors’ appointments, and with my siblings. 

Do you believe that support people, caregivers, such as children, are able to also assist in receiving care? 

Dr. Nyame: 

Absolutely. The data is overwhelming in this scenario, patients who are partnered or have strong social support do better, and I always say that the patients who have the best outcomes when it comes to cancer, have someone like you, Sherea in their life. It’s not surprising, given the burden of cancer treatment, that having someone that can help navigate all the aspects of your care and be there to support you leads to better outcomes and better satisfaction with the treatments that you choose. A cancer diagnosis, especially prostate cancer diagnosis, a disease that has a very high cure rate, has a very long-life span, but has really life-altering potential consequences of the treatments you received, has an impact on what we return for survivorship. So how do you live with your cancer, and so the individuals that are there to support you through that journey are absolutely critical.  

How Can a Multi-Disciplinary Team Benefit Prostate Cancer Patients?

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How Can a Multi-Disciplinary Team Benefit Prostate Cancer Patients? from Patient Empowerment Network on Vimeo.

 A prostate cancer multi-disciplinary team can benefit patient care. Watch as expert Dr. Yaw Nyame explains the typical steps taken through prostate cancer care and how the team members can vary for localized prostate cancer versus advanced prostate cancer. 

See More From Best Prostate Cancer Care No Matter Where You Live

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How Has the Onset of Prostate Cancer Evolved?

Transcript:

Sherea Cary: 

What does a multi-discipline approach to prostate cancer look like?  

Dr. Nyame: 

Well, when you think about prostate cancer and how it’s diagnosed and how it’s treated, you’re talking about a process that involves a team, the process often starts with your primary care physician, he or she may order a PSA test, which will prompt a biopsy if it’s positive. So that’s the step one is that relationship you have with your primary care physician. Step two is going to be your urologist, that’s the person that’s going to do your biopsy, and if you are diagnosed with prostate cancer that person in conjunction with your primary care physician is then going to be leading this process of do we actively watch your cancer because it’s a low risk, or do we seek treatment because it’s localized, meaning it’s in the prostate and we can still get your treatment with curative intent as we call it, or has it spread? And in that case, your options for a doctor are different on the watch side, you’re probably looking at a urologist who’s watching closely, on the localized side, you’re going to talk to maybe a radiation specialist or a urologist, because both treatments are equal and their effectiveness from cancer treatment.  

But they have different side effects. And I think to get good information about what treatment is best for you, you should see both, and then on the advanced side, you’re talking about a medical oncologist that’s going to help navigate all of the various treatments that we have now for stage IV prostate cancer, and even in that setting, you might still find yourself considering a clinical trial with someone like a urologist or getting radiation treatment, which can be standard of care in select patients that have stage IV cancer. So, as you can see, it is a very wide range of individuals that are helping take care of your cancer, and that’s just on the treatment side, that’s not talking about any of the other supportive services that you may need that may exist either in your community or in your health systems where you’re getting treated. And those can include patient navigators, social workers, the various nursing services, nutritionists, there are a lot of people that you may want to put on your team as you’re considering your care.  

Head and Neck Cancer, What Are Telemedicine Challenges and Opportunities?

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Head and Neck Cancer, What Are Telemedicine Challenges and Opportunities? from Patient Empowerment Network on Vimeo.

For head and neck cancer patients, what barriers and opportunities have emerged from the addition of telemedicine? Watch as expert Dr. Samantha Tam from Henry Ford Health System shares insight about obstacles that she has seen for some patients and some helpful ways these challenges have been overcome in patient care.

See More From The Head & Neck Cancer TelemEDucation Empowerment Resource Center

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Transcript:

Samantha Tam, MD, FRCSC, MPH: 

So there are lots of challenges and opportunities for virtual care and patients with head and neck cancer. One of the challenges is the fact that a lot of head and neck cancers occur within the upper air or digestive tract and therefore it’s very difficult to examine patients or to get an idea of the extent of their cancer, or the disabilities, or difficulties patients encounter as a result of their cancer, because of where the cancer is. On top of that, a lot of patients present to us with difficulties with communication, either they have hoarseness because of glottic cancer or maybe they have airway distress and they already have a tight tube resulting in their inability to formulate well, especially over virtual platforms such as the telephone or virtually through the Internet. These are the major challenges though, they can be overcome with things such as typing answers through the chat functions, as well as writing on a tablet in order for us to read. However, there have been a lot of opportunities for patients with head and neck cancers, I think that the major opportunities are with patients that are seeking help from allied health professionals such as speech language pathologists, psychologists, dietitians, social workers, a lot of these providers that are very involved in the care of patients throughout diagnosis, treatment as well as surveillance. 

These visits are sometimes not requiring any physical examination, not requiring any endoscopic examination and may be well completed through a virtual platform such as telemedicine.