Tag Archive for: patient navigators

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.

Related Resources:

Accessing Quality Myeloma Care | Advice for Overcoming Obstacles

Accessing Quality Myeloma Care | Advice for Overcoming Obstacles

Key Advice for Myeloma Patients | Questions to Ask About a Care Plan

 Myeloma Symptom Management | An Expert’s Approach

Myeloma Symptom Management | An Expert’s Approach

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.    

Where Can CLL Patients Access Financial Support?

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Where Can CLL Patients Access Financial Support? from Patient Empowerment Network on Vimeo.

Is there patient financial assistance for chronic lymphocytic leukemia (CLL) treatments? CLL expert Dr. Seema Bhat shares resources and advice for accessing support.

Seema Bhat, MD is a hematologist at The Ohio State University Comprehensive Cancer Center – The James. Learn more about Dr. Bhat.

See More from Thrive CLL

Related Resources:

Understanding CLL Treatment Classes

Understanding CLL Treatment Classes

 Educational Resources for CLL Patients

Educational Resources for CLL Patients

 Emerging CLL Treatment Approaches

Emerging CLL Treatment Approaches

Transcript:

Katherine:  

Financial concerns can be another source of stress for people with CLL. Obviously, everyone’s situation is different, of course, but what resources are available for patients who need financial support? 

Dr. Bhat:  

So, financial barriers can be a real concern for our patients. Targeted therapies are very expensive, and although insurances do cover them, the approved FDA drugs, copays can be very high, and this adds on because our patients with – our treatments with CLL, some of them tend to be indefinite. That means patients have to take those medications on an ongoing basis, and when they face such situations, high copays, we look into financial assistance. We look for funding for copay assistance, and funding can be provided by pharmaceutical companies. We can also apply for grants through The Leukemia & Lymphoma Society and other resources to help out our patients with these financial concerns.  

Katherine:  

So, does the patient work with the healthcare team to find financial support? 

Dr. Bhat:  

Absolutely. We at our institution have what is called, “MAP,” or Medication Assistance Program. 

And when we see that – we run the medications through the insurance, then we see the copay is high, we refer our patients to the MAP program, and then they take over. They find them grants, they find them assistance through be it pharmaceuticals, copay assistance programs. So, invariably, almost all patients who come and see us are helped through that program.  

Katherine:  

What about a nurse navigator or patient navigator? What do they do? How can they help?  

Dr. Bhat:

Well, so yes. Nurse navigators and patient navigators are also very important for caring for our patients. So, patients can have, besides our care for our patients which includes caring for their disease, caring for their symptoms, caring for their reduced hemoglobin and reduced platelets, our symptom management, they have psychological needs, they have functional needs, they have needs like family support. 

So, these are all the things that patient navigators can help patients set that up based on their – we have patients who travel from out of state, are from two or three hours away. So, these patient navigators look into what resources they should have available locally. Sometimes, patient navigators help us – some patients cannot do frequent travels back and forth, so we get them connected to local oncologists, also. So, patient navigators look into those appointments, look into those offices, so they provide a lot of help to us manage our patients. So, they provide more of a holistic management, rather than just treatment of CLL. 

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.

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

Related Resources:

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

Related Resources:

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

Related Resources:

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.  

How Can Breast Cancer Patients Connect to Patient-Centered Care?

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How Can Breast Cancer Patients Connect to Patient-Centered Care? from Patient Empowerment Network on Vimeo.

What actions can breast cancer patients take to connect to patient-centered care? Dr. Regina Hampton shares insights about breast cancer resources that aid in supporting whole care of the patient.

See More From the Best Care No Matter Where You Live Program

Related Programs:

What Key Questions Should Newly Diagnosed Breast Cancer Patients Ask Providers?

Transcript:

Dr. Nicole Rochester: 

Something that I see in my field is that most patients and family members are operating from obviously a non-medical viewpoint, and sometimes they just don’t even know what questions to ask, how can we empower patients so that they don’t feel limited in their care, and how do we make them aware of the treatment options that are available? 

Dr. Regina Hampton: 

So I think the good thing about many breast centers is that they do have what are called navigators, who really sit and hand-hold the patient through the process, and they sit and do one-on-one counseling, they try to find resources to help the patient get through treatment, they hold support groups, they really are a wealth of information and a nice go-between between the patient and the physician or the provider. So trying to find a comprehensive breast center where they have a whole program that’s dedicated to patient-centered care, I think is important. It’s also important that patients be empowered to go online, you can find what questions do I ask? Print it out and bring it to your appointment and ask those questions, and it may take a couple of visits to get those questions answered, but I think it’s important to get the questions answered. If you’re with a provider who is feeling like they don’t have time to answer or they’re blowing you off when you’re answering those questions, guess what? You can fire your doctor and go find another doctor and I don’t think we do that enough. 

I get on my patients and say, “You know what, you all scrutinize when you go buy shoes, when you go buy that cute dress, when you go buy that new car, but we should scrutinize our providers because they’re taking care of our most precious commodity, and that is our body.” 

Dr. Nicole Rochester: 

That is absolutely true. I have fired a couple of doctors in my day, and I recommended that some of my family members fired their doctors as well, so I really appreciate that coming from you, Dr. Hampton. And you touched on a little bit on what I’m going to ask next, and not really staying on this advocacy piece, we’ve talked about the importance of patients feeling empowered, and you shared a really good tip which I love, which is writing your questions down, it’s something that I frequently recommend to my clients and my friends and family members.