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Will Telemedicine Give More CLL Patients Access to Clinical Trials?

Will Telemedicine Give More CLL Patients Access to Clinical Trials? from Patient Empowerment Network on Vimeo.

Though some with chronic lymphocytic leukemia (CLL) may have limited access to clinical trials at expert centers, telemedicine may change access for some patients. Watch as Dr. John Pagel shares how telemedicine might improve CLL clinical trial options. 

See More From the CLL TelemEDucation Empowerment Resource Center

Related Resources:

Will Telemedicine Activate More Remote Tools to Manage CLL?

 

Telemedicine & Second Opinion Options

How Will Telemedicine Impact Time-Limited Therapy in CLL?

Will Telemedicine Activate More Remote Tools to Manage CLL?


Transcript:

Stephanie Chuang: 

There is a lot of attention being paid to clinical trials and progress, and so how might telemedicine impact clinical trials when it comes to CLL therapy?

Dr. John Pagel: 

Well, I want to first tell the audience that clinical trials are critically important for many patients who have CLL. Clinical trials are really an opportunity to get something that’s better than the standard of care most often, or at least just as good and has the promise again, to be better. We have advanced major new paradigm changing therapies over the last many years through clinical trials, and now we’re looking at really exciting things like bispecific antibodies, newer generations of these targeted therapies that are better tolerated and perhaps even more active in resistant patients. And even as we talked about CAR T-cell therapies, those are all only available through clinical trials, and then that’ll continue to evolve and go on as well.
 
I would encourage patients to think about clinical trials, and because of telemedicine, now we’re going to be able to reach to other patients who are further away from an expert, perhaps where clinical trials are only available, and they can be then involved in one of those opportunities. Telemedicine, I hope, and I believe, will be a major advance for getting the cutting-edge, best therapies for patients who might be very far away from a very important expert center. 

Will Telemedicine Activate More Remote Tools to Manage CLL?

Will Telemedicine Activate More Remote Tools to Manage CLL? from Patient Empowerment Network on Vimeo.

As telemedicine has grown in the management of chronic lymphocytic leukemia (CLL) care, will its use bring other remote tools into patient care? Watch as CLL expert Dr. John Pagel explains.

See More From the CLL TelemEDucation Empowerment Resource Center

Related Resources:

 

Telemedicine & Second Opinion Options

How Will Telemedicine Impact Time-Limited Therapy in CLL?

Will Telemedicine Be Part of Routine Management for CLL?


Transcript:

Stephanie Chuang: 

Dr. Pagel, there are tools out there like video otoscopes, electronic stethoscopes, thermoscopes, retinal imaging systems, will CLL patients be able to have access to those tools for themselves one day, and on that note, what are the tools you believe will impact the future of CLL care?

Dr. John Pagel: 

Yeah, in fact, that’s really where we’re going. We do stuff like that already through the hospital. As you may know, as an example, if someone comes in with a cardiac condition, they need to be monitored remotely, they can’t stay in the hospital indefinitely we need to kind of know what’s happening, perhaps as an example with their heart rhythm. So they actually have tools where they can wear a little monitor even on their wrist that communicates with the doctor. So the doctor can see even in real time what’s happening with that individual patient. 

These types of tools are the future, and we’re not going away from them, we’re embracing them. We’re not there yet for routine standard care, especially in CLL but they will be simple things like heart rate, blood pressure measurements that are very simple and easy to do that not only are able to be read by the patient, but actually again, from a remote standpoint, be electronically downloaded and delivered to the physician, real time. That’s going to be important. And actually, I believe that we’ll even add advances for that in the blood work or other approaches in the near future. So just stay tuned we’re just scratching the surface there. 

Stephanie: 

Okay, so you’ve heard it here first from Dr. Pagel, stay tuned on this.  

5 Ways a Patient Portal Can Improve Your Health Care Experience

A patient portal is an online application which gives patients access to personal health information stored in a health care organization’s electronic health records (EHR). If your doctor’s office offers a patient portal, consider these reasons why you should take advantage of the service.

Schedule Appointments

Use the portal to request or schedule appointments with your health care providers.

Request Refills

Giving you a convenient way to request refills should make it easier for you to keep up with refills and avoid lapses in the medication regimen. One study found that patients who use the portal to request refills of cholesterol medications took the medications more consistently and had better cholesterol levels (compared to patients who didn’t request the refills online).

View your Records

With a patient portal, you gain access to critical health information that was previously locked up in the EHR. A typical portal allows you to view your test results, medications, immunizations, and allergies. A summary of your doctor visits and educational materials may also be available. You have the right to view this information and use it to participate more fully in your health care.

Improve the Accuracy of Your Records

Keeping a list of your medications may seem like a straightforward task for a health care provider using an EHR. However, there are several reasons why your medication list may not be current and accurate, reflecting the name and dose of all the medications you are taking:

  • Human error in entering the medications into the EHR
  • Incomplete information at time of medication entry. For example, in your first visit to a doctor, maybe you remembered the names but not the doses of your medications.
  • Over-the-counter medications are frequently overlooked
  • Providers from multiple health organizations are prescribing medications for you
  • You stopped taking a medication

Fortunately, some portals give you the opportunity to submit corrections to your medication list and other parts of your record. This type of feedback loop is designed to improve the quality and safety of your care. In small pilot study in the Geisinger Health System in Pennsylvania, patients used the portal to submit corrections such as:

  • Add over-the-counter medications, vitamins, and supplements
  • Add medications prescribed by providers outside the Geisinger system
  • Remove medications they had stopped taking
  • Make corrections in the frequency and doses of medications

Communicate with Healthcare Team

A patient portal allows you to exchange secure messages with your healthcare provider. Rather than wait on hold or play phone tag, you can submit a question at your convenience. The response time may depend on the triage system used by the medical office for electronic messages, the content of your message, and the frequency with which your provider checks messages. A systematic review showed that patients who communicate electronically with their health care team can enjoy improvements in the following health dimensions:

  • Knowledge about their health condition
  • Ability to cope with and manage chronic health issues
  • Blood sugar, blood pressure, cholesterol, and weight (for patients with diabetes)
  • Control of asthma and quality of life (for patients with asthma)
  • Chronic back pain
  • Self-esteem and empowerment
  • Stress, depression, and loneliness

Note that electronic messaging isn’t appropriate in all medical situations.

When You Should (and Shouldn’t) Email Your Doctor

If you don’t already do so, you probably wish you could communicate with your doctor by email. It would align your health care experience with the rest of your increasingly digital life. Who wants to play phone tag or be put on hold when dealing with health issues?

Emailing your doctor is best done through a patient portal linked to your electronic health record (EHR). This allows your doctor to view your medical history, medications, and test results when responding to your email.

Patient-doctor email will likely increase as patient portals become more widespread and federal incentives for email are rolled out. Someday, emailing your doctor may become part of standard medical care.

However, email is not suitable for all health-related situations. Just as there are rules of etiquette for work-related emails, there are a few guidelines for emailing with your doctor. This article will outline a few scenarios where it is appropriate and not appropriate to email your doctor.

Email your Doctor if . . .

You have a straightforward question which can be answered in one or two exchanges.

You can save yourself an office visit by taking care of the issue by email. For example, if you just need a refill of a medication you have been taking for a long time, and you’re otherwise doing well, then an email may save you and the doctor some time. Depending on the nature of the request, the doctor may forward the message to another member of the medical team or office staff. Some offices designate a nurse or assistant to screen all the messages and assign them to the appropriate recipient.

Note that the email exchange may not be free, because doctors can bill for the time they spend responding to your email.

You have been waiting longer than expected to hear about test results or other pending issues. Doctors can easily get bogged down with their responsibilities. A timely reminder from you is helpful.

You forgot or needed some clarification of what your doctor said during a recent visit. It can be tough to remember or process everything that you and your doctor discussed. Sometimes it’s best to tie up the loose ends by email.

You can supply information that your doctor requested, such as home blood pressure readings, or results of a test you had at another health care facility.

Don’t Email Your Doctor if . . .

You are reporting sudden or severe symptoms which could indicate a medical emergency. You may not get an immediate response, and your condition could deteriorate as you wait for a reply. Email in a medical setting is only appropriate for non-emergencies.

You want to discuss a complex issue that would require a lengthy back-and-forth discussion. These issues are best discussed on the phone or in person.

You want to discuss an emotionally-sensitive topic which can’t fully be addressed by email. Facial expressions and body language are important in communication. Sometimes an old-fashioned office visit is best.

You are unsure of the security of the email transmission. Patient portals are designed to be secure. But if you’re emailing your doctor at “Doctor@mail.com”, the message could be intercepted.

Once your email becomes a part of your medical record, other people who have legitimate access to your record may see it.

Caregiver Support: Taking Care of YOU

Caregiver Support: Taking Care of YOU from Patient Empowerment Network on Vimeo.

Prostate cancer caregivers support patients in many ways, but also need support for themselves. Social worker Linda Mathew details the role of caregivers and shares resources to help them maintain their own self-care.

Linda Mathew is a Senior Clinical Social Worker at Memorial Sloan Kettering Cancer Center. Learn more here.

See more from The Pro-Active Prostate Cancer Patient Toolkit

Related Resources

How Can a Prostate Cancer Social Worker Help You?

Why You Should Speak Up About Your Prostate Cancer Care

Tools for Managing Prostate Cancer Fear and Anxiety


Transcript:

Linda Mathew:

So, caregivers have a really important role in caring for their loved ones, so whether it’s their spouse, or a sibling, or a child, they – their role 1). Is to advocate as well for the patient in terms of saying, “Hey, you know what? Let me call the doctor’s office. This side effect was on the list, but I’ve noticed that it’s ongoing, so let me reach out to the office for you if you’re not feeling well.”

They are the eyes and ears for their patient or for their loved one in terms of just saying, “Something is not right. Let me call.” And, most of our nurse practitioners or nurse office practice nurses will say to the caregiver, “You are our eyes and ears when you’re at home. When the patient is here, we’re the eyes and ears for that person to assess what’s going on.”

But also, the caregiver really – sometimes, what happens is there’s a role reversal, so they become that emotional support for the loved one, the financial support, practical support, and also the spiritual support for their loved one, and we remind them that is your – that is a huge role to play, and there’s no handbook for it, but we have resources for you, so you’re not alone in that process.

And, the one thing we really stress is here at Memorial Sloan Kettering Cancer Center, we recognize the important role of our caregivers and how important they are to the loved one that they’re caring for. So, with that resource-wise, the social work department has a program called Reach for Caregivers, and it’s a hospital-wide program that we offer support groups as well as educational workshops.

And then, in November, being Caregiver Month, we put on a lot of different programs just for our caregivers to know we recognize you, we know you need the support, so here it is. So, in terms of support groups we offer, it’s all online because we know that sometimes, the caregiver is also working outside of the home, so to help meet them where they are, we’ve offered an online support group that they can tap into during their lunch hour, or even after work.

Why You Should Speak Up About Your Prostate Cancer Care

Why You Should Speak Up About Your Prostate Cancer Care from Patient Empowerment Network on Vimeo.

What are the benefits of prostate cancer patients speaking up about their care? Linda Mathew discusses the impact of patients taking an active role in their care.

Linda Mathew is a Senior Clinical Social Worker at Memorial Sloan Kettering Cancer Center. Learn more here.

See more from The Pro-Active Prostate Cancer Patient Toolkit

Related Resources

How Can a Prostate Cancer Social Worker Help You?

Tools for Managing Prostate Cancer Fear and Anxiety

Caregiver Support: Taking Care of YOU


Transcript:

Linda Mathew:

Our medical team is really open about having discussions. So, 1). Our team is not blind to knowing that our patients may want a second opinion just to validate “Hey, is this – do I have all of the information laid out in front of me?”, and we always say it’s like – it’s always good to have that second opinion just to say, “Ah, what’s been told to me is correct, and it goes in line with what I’m reading on the different websites for these places that I’m going to for possible treatment.”

I always tell our patients also that you are your best advocate, so you know what your needs are, and if it means that you need more information before you make a final decision, then do it.

So, if it means talking to other people or going for a second opinion, then go ahead and do that, but I also tell our patients if you’re scared about asking a question, if you’re not – that’s a huge issue. If you’re scared to ask a question to your medical team, that means that, in itself, says, “Hey, is this the right fit?” So, I always encourage our patients, “Our team knows that you want to ask a question. Just go ahead and ask it. You’re not going to embarrass them; you’re not going to embarrass yourself. That’s what your physician and the nurse are there for.”

I think the one thing I would want to stress is that you, the patient, knows themselves. They know what their needs are more so than anybody else, so if that means that you feel like something is missing, then speak up, let us know, and if you don’t feel saying it to the nurse at the moment when you’re in a visit, you can always reach out to the social worker, who can help direct that question back to the team or help you find a way to ask that question either via the portal or an email to the medical team.

Tools for Managing Prostate Cancer Fear and Anxiety

Tools for Managing Prostate Cancer Fear and Anxiety from Patient Empowerment Network on Vimeo.

Fear and anxiety are common feelings that arise while living with prostate cancer. Social worker Linda Mathew explains how she helps patients improve quality of life while living with prostate cancer.

Linda Mathew is a Senior Clinical Social Worker at Memorial Sloan Kettering Cancer Center. Learn more here.

See more from The Pro-Active Prostate Cancer Patient Toolkit

Related Resources

How Can a Prostate Cancer Social Worker Help You?

Why You Should Speak Up About Your Prostate Cancer Care

Caregiver Support: Taking Care of YOU


Transcript:

Linda Mathew:

The common fears and worries that they have are – form the support group itself, the main ones that we always hear are the incontinence and erectile dysfunction. So, we really focus on what that means for them as men because it is their manhood, and their biggest concern is “No one told me I was going to have incontinence for this long. I thought it was going to end after a couple months of recuperation from surgery.”

And, we remind them your body has just gone through a shock in terms of having a prostatectomy, and so, it’s your body having to realign and remember what to do again in terms of taking care of itself. Just the same way as in erectile dysfunction, that is possible after having a prostate surgery – prostatectomy, so we remind them there are resources we have here to help address sexual health. So, I am obviously going to refer our patients to our men’s sexual health clinic, which is run by Dr. Mulhall and his team. So, those are the two areas that they really bring up, and it’s also in terms of “Can I have a relationship?” if they’re single, or “How do I let my significant other know that I’m having these issues?”

And, I always – I’m always encouraging our patients “Let’s talk about how to have that conversation if you’re scared of having it. What does that look like for you? What do you think is the worst thing that would be said to you? Let’s approach it from that end in terms of saying here’s some tools for you to have that discussion with your significant other.”

I start off with validating their feelings. I think that’s really important for our male population, is just that it’s okay to feel anxious, and anxiety is real, and with this population, PSA anxiety is very real. So, it’s going in for those three-month checkups to say, “How is my PSA doing? Am I in the right track?”, and just giving them that validation like, “It’s normal. What you’re feeling is normal.”

It relieves a lot of their anxiety because then, they’re thinking, “Okay, I’m not the crazy one here. Yes, what I’m going through – this uncertain journey that I’m on – everyone’s feeling this, no matter what the diagnosis is.” And then, I just – we talk about what it means for them, like what does this cancer diagnosis mean for them. Most of our men are always like – they want something that can be like there’s a solution-oriented process to it, and there’s no solution-oriented process to this, so it’s about how do you sit in that ambiguity, that uncertainty of this journey, and what can you do for yourself that you feel like you’re in control of?

So, for our prostate cancer patients, knowing that there are other people out there that they can talk to is a relief for them, that they’re able to know that there might be a group of men who can say, “Hey, I was there right where you were when I was initially diagnosed in terms of anxiety, in terms of not knowing how to make a decision about treatment plans or treatment options, but maybe my two cents can help you.”

A lot of patients that come to my support group, which is through the Resources for Life After Cancer program, really find that connection helpful because you’ve been given so much information, and you’re feeling overwhelmed by “How do I make this choice – a good choice – for myself?”, connecting with other men who’ve been given the same options, and made a decision, and see where they are now in treatment helps release – decrease the anxiety, but also gives them some relief in terms of not feeling like there’s pressure to how to choose the right answer, or the right recommendation, or the right treatment plan.

How Can a Prostate Cancer Social Worker Help You?

How Can a Prostate Cancer Social Worker Help You? from Patient Empowerment Network on Vimeo.

How can a prostate cancer social worker help patients and their families? Linda Mathew, a senior social worker, shares how she provides support for patients and their loved ones after diagnosis, during treatment, and beyond.

Linda Mathew is a Senior Clinical Social Worker at Memorial Sloan Kettering Cancer Center. Learn more here.

See more from The Pro-Active Prostate Cancer Patient Toolkit

Related Resources

Tools for Managing Prostate Cancer Fear and Anxiety

Why You Should Speak Up About Your Prostate Cancer Care

Caregiver Support: Taking Care of YOU

 


Transcript:

Linda Mathew:

Hi, I’m Linda Mathew, and I am a senior social worker here at MSK. I am a supervisor in the Department of Social Work, but I also have a service, and I work with the urology service, so, both medicine and surgical patients.

 And, really, it’s just – I’m here as clinical support to our patients in terms of individual counseling, couples counseling, family counseling.

So, what we really do is we provide supportive counseling to our patients. So, in terms of when we say “supportive counseling,” if patients are anxious, or have some depression around the diagnosis, or have just fears around what that – what it means to have a cancer diagnosis and the uncertainty about what that journey will look like, they are referred to me to just process that out loud in terms of questions about themselves and how – how are they going to manage a diagnosis if they’re going to be on chemotherapy or questions about how to support their family around this diagnosis if they don’t even know how to have this conversation with their family.

Most times, if it’s a couple that come in, it’s around how do I support the patient as well as the caregiver through the trajectory of this patient’s treatment. So, the patient is dealing with their own diagnosis and treatment and what all that means, and the caregiver is also having a parallel process with this where they are caring for the loved one, but also have their own fears about “How do I navigate being a support to them? I don’t know what it means to be a caregiver for somebody who’s going through medical treatment.”

So, we help slow that down for them and say, “These are the things that you need to look out for. Just – you are their extra advocate. You are that person – their eyes, their ears – when they are not able to call the doctor’s office to be able to say, ‘I can call the doctor’s office with this information. Just tell me what you want me to say.’”

But, you’re also just there as a support, so it’s a really weird kind of…reminding our patients the tools that they already have, but because they feel like they’re in a crisis, they forget what those tools are.                

Please don’t feel like you have to figure this out on your own. Your medical team is here for you, social work is here for you, we have an ancillary service – like, services available in terms of the men’s sexual health clinic integrated medicine counseling venture, all in terms of supporting our patients. So, when in doubt – and, if you don’t know who to turn to, just turn to your social worker and ask them. Say, “I need help,” and we’ll guide you through it.

Telemedicine Challenges and Opportunities for CLL Patients

Telemedicine Challenges and Opportunities for CLL Patients from Patient Empowerment Network on Vimeo.

For chronic lymphocytic leukemia patients, some challenges have emerged with care via telemedicine. In this telemEDucation program, CLL expert Dr. John Pagel explains opportunities for patients and providers to optimize these visits.

See More From the CLL TelemEDucation Empowerment Resource Center

Related Resources:

 

What CLL Population Will Benefit Most From Telemedicine?

How Will Telemedicine Impact Time-Limited Therapy in CLL?

Will Telemedicine Be Part of Routine Management for CLL?

 

Transcript:

 Stephanie: 
Let’s highlight both the challenges and opportunities that come with telemedicine. So first, it does seem to be reshaping the traditional CLL doctor-patient relationship to some extent, and you’ve touched on this. So with your experience as a CLL expert, what are the limitations of telemedicine?

Dr. John Pagel: 
Well, one of the, of course, things about telemedicine is it’s not just figuring out how to do it from the provider’s standpoint, but it’s also figuring out how to do it from the patient’s standpoint. So we can’t expect, to be honest, that this goes just like it would if you were in the clinic, sitting on the exam table with your physician there at the computer right next to you in that exam room, it shouldn’t be expected that it’s going to go like that. And unfortunately, to this point, we’re trying to figure out that. It doesn’t do that. And so that takes some alteration in our approach, on the provider’s side and on the patient’s side as well – and in particular, what the expectations are for these patients and for the providers.

So it needs to be very focused, and it needs to be concise. So what is my message there? For the patient’s side, know that the doctor’s busy, they’re doing their work all day long with lots of sick people potentially, and so they need to be very focused on what the issues are and the direction of the conversation. So come prepared to a telemedicine visit, if you’re a patient. Come prepared to know what you want to talk about and what the focus is with the priorities that you might have that are issues for you around your CLL disease. And the provider will do that hopefully as well. It’s a learning thing. But I will tell you, the first time will take a little bit of learning. By the second, third time that you’re actually interacting with your doctor, that same one-on-one relationship, it really

Will Telemedicine Mitigate Financial Toxicity for CLL Patients?

Will Telemedicine Mitigate Financial Toxicity for CLL Patients? from Patient Empowerment Network on Vimeo.

The cost of chronic lymphocytic leukemia (CLL) care can be inappropriately high for some patients. Watch as CLL expert Dr. John Pagel details how telemedicine can affect the high cost of care.

See More From the CLL TelemEDucation Empowerment Resource Center

Related Resources:

 

What CLL Population Will Benefit Most From Telemedicine?

How Will Telemedicine Impact Time-Limited Therapy in CLL?

Will Telemedicine Be Part of Routine Management for CLL?

 

Transcript:

Stephanie: 
Dr. Pagel, we know the stresses of paying for cancer treatment. So how can maybe telemedicine help to mitigate financial toxicity for these countless CLL patients and their families?

Dr. John Pagel: 
Well, this is an important part of medicine in general, and it’s certainly relevant, of course to the CLL patients. The cost of care is inappropriately high, not just the pharmaceutical agents, but, of course, the visits. So there are evolving ways of figuring out how reimbursement will happen for physicians and how payments happen on the side of patients. We’re still not completely clear on that, but likely what will happen, over time, is that we will be doing less and less unnecessary tests. And with less unnecessary tests, the cost of care will go down for the individual specific community and patients. It’ll be very important for us to figure out what we really need to be doing and what we don’t, and telemedicine’s going to help us figure that out. 

Is Remote Monitoring for CLL Patients on CAR T Therapy the Future?

Is Remote Monitoring for CLL Patients on CAR T Therapy the Future? from Patient Empowerment Network on Vimeo.

Will telemedicine play a greater role in CAR T remote monitoring and help some CLL patients avoid long hospital stays? Learn how harnessing technology could optimize care for CAR T patients.

See More From the CLL TelemEDucation Empowerment Resource Center

Related Resources:

 

What CLL Population Will Benefit Most From Telemedicine?

How Will Telemedicine Impact Time-Limited Therapy in CLL?

Will Telemedicine Be Part of Routine Management for CLL?

 

Transcript:

Stephanie: 

There’s excitement around telemedicine and CAR T, so specifically remotely monitoring CAR T to help avoid patients having to deal with long hospital stays. Is this the future?

Dr. John Pagel: 

It’s clearly the future. So what you’re alluding to, of course, is a way that we are now doing to trick a patient’s own immune system cells into targeting and fighting the cancer, and of course, we’re talking about CLL here. It’s a revolutionary treatment in CLL, we still have quite a ways to go, we are doing a lot of important trials and advancing the field, but we don’t have an approved approach in CLL yet, but we will. No doubt. And the goal of that therapy is not just to eradicate the disease and keep it from coming back, but it’s also to do it in a very safe and actually appropriate way, and that’s as an outpatient.

Those patients clearly have risk for an adverse event or a side effect, that can be problematic. So they have to be in close contact with a physician and sometimes they’re required to be very close to the treating center for prolonged periods of time. Most of the time that’s very uneventful. So it’s a major disruption to a patient’s life. You could imagine that you’re traveling hundreds of miles to go to a center, and not just go to a center that provides the CAR T-cell therapy, but is actually monitoring you for a month or more, so you’re away from home for a long time, living in a hotel, that’s a problem.

Telemedicine is a way to get around that. We will evolve to being able to treat patients, get them home, and then telemedicine will work where the visits can be done in a very expeditious manner, and again, in a very appropriate way so that that will also reduce the interactions away from home, and as we said cost of care as well. 

What Subset of CLL Patients Should Utilize Telemedicine?

What Subset of CLL Patients Should Utilize Telemedicine? from Patient Empowerment Network on Vimeo.

With monitoring of chronic lymphocytic leukemia (CLL), there is a subset of patients that will get the most benefit from telemedicine visits. Learn more about which CLL patients should use telemedicine and which higher risk patients should still visit in-person. 

See More From the CLL TelemEDucation Empowerment Resource Center

Related Resources:

 

What CLL Population Will Benefit Most From Telemedicine?

How Will Telemedicine Impact Time-Limited Therapy in CLL?

Will Telemedicine Be Part of Routine Management for CLL?

 

Transcript:

Stephanie Chuang: 

Can you share the telemedicine platforms that you, in your practice, use and maybe so far, what are some of the best practices observed?

Dr. John Pagel: 

Right, and I think that’s probably the biggest key and takeaway that we can talk about here for the audience, is to remember that telemedicine isn’t going to be appropriate for every patient. And for each individual patient, there are times where it certainly would be very appropriate and other times where it might not be. So, you know, of course, people that have active, growing, rapidly progressing disease, we’re not talking about those people, those people need to be seen by their provider, they need, of course, close attention and monitoring. But many, many patients, in fact, the majority of patients with CLL are not in that kind of group.

So we’re talking about people that don’t have high-risk genetic features, in particular, those are things like a deletion of the short arm of chromosome 17, that’s a 17p deletion, or an 11q deletion or a TP53 aberration, those are genetic risks that your doctor will know about with regard to your specific individual CLL. And most people, fortunately don’t have those features and they behave in a very indolent, slow growing, more benign-like fashion, and then those are the people where probably telemedicine would be appropriate for many visits.

I’ll just say, I would suggest that in general, telemedicine shouldn’t be something that you do with every single visit. Every once in a while, you should have that face-to-face, hands-on interaction with your primary provider. But I’ll also remind people that not everyone lives real close to their oncologist or even their CLL expert. So if you’re far away, you can connect not just with your oncologist who takes care of you, but with an expert who might be some distance away, and that’s the beauty I hear about the telemedicine.

Will Telemedicine Be Part of Routine Management for CLL?

Will Telemedicine Be Part of Routine Management for CLL? from Patient Empowerment Network on Vimeo.

With the COVID-19 health crisis, telemedicine has emerged as part of routine healthcare. Watch as CLL expert Dr. John Pagel gives his viewpoint on how telemedicine will be included in routine management of CLL. 

See More From the CLL TelemEDucation Empowerment Resource Center

Related Resources:

 

What CLL Population Will Benefit Most From Telemedicine?

How Will Telemedicine Impact Time-Limited Therapy in CLL?

What Subset of CLL Patients Should Utilize Telemedicine?

 

Transcript:

Stephanie: 

You know, of course, COVID-19 has forced healthcare providers to use telemedicine more than ever before, so do you think this will definitely continue on past COVID-19? And if so, how quickly it will even grow?

Dr. John Pagel: 

Well, I think the federal government’s understanding that this is a part of medicine moving forward that’s important for patients, patients like it, and I don’t blame them. If I’m on that side of care, I feel perfectly fine, I have CLL, let’s say, and nothing’s going on with me, and I’m very well-educated about my disease, and by the way, that’s probably critically important to this whole conversation is to understand and be educated well about your specific disease.

Remember, each patient has to be their own best advocate. And that makes telemedicine work. And frankly, the horse is out of the barn, in my opinion, telemedicine is where we’re going, and it’s not going to come back. Patients like it, physicians are getting used to it, Stephanie, it’s something that we are reluctantly in some ways adopting, but it’s just how it is, and I think it’s going to be a major important thing for many, many CLL patients as routine management. 

How Will Telemedicine Impact Time-Limited Therapy in CLL?

How Will Telemedicine Impact Time-Limited Therapy in CLL? from Patient Empowerment Network on Vimeo.

With chronic lymphocytic leukemia time-limited therapy, treatment is delivered for a pre-determined period of time and then is stopped after remission is achieved. Learn how telemedicine impacts patients on this type of treatment. 

See More From the CLL TelemEDucation Empowerment Resource Center

Related Resources:

 

What CLL Population Will Benefit Most From Telemedicine?

Will Telemedicine Be Part of Routine Management for CLL?

What Subset of CLL Patients Should Utilize Telemedicine?

 

Transcript:

Stephanie: 

Dr. Pagel, we’d love to ask about the time-limited therapy in CLL specifically, and how telemedicine might play a role in that?

 

Dr. John Pagel: 

Well, this is one of the things that we’re still learning about, Stephanie, and I think it’s going to evolve and change a bit over time, but we know that we need to do. Continually better for patients, of course, we need to meet unmet needs in CLL. And there are lots of unmet needs still in CLL, of course, one of them is curing the disease, and we’re not focusing on therapeutics today in our discussion about working towards that goal, but that does remain a major goal, and we’re working towards that. But really, of course, there are situations with unmet needs where people have been getting therapy continuously now for long, indefinite periods of time, and they may not need all that therapy. And so one of the things is that we’re learning about is what you mentioned time-limited therapy. So the idea of delivering therapy for some defined period of time, getting to a very good remission and then stopping therapy. And where telemedicine comes into play there, is that if they’re off of therapy and doing well, we don’t need to necessarily drag those patients back to the clinic and put them through, not only all of that exposure and that risk, but of course the anxiety that goes with it and everything else.

So again, I think that in those cases where we’re monitoring patients with telemedicine, it’s beautiful for time-limited therapy, and it also allows for us to stay even in closer contact with our patients who again, might have some difficulty getting into the clinic. 

What CLL Population Will Benefit Most From Telemedicine?

What CLL Population Will Benefit Most From Telemedicine? from Patient Empowerment Network on Vimeo.

Among chronic lymphocytic leukemia patients (CLL), there are some that will benefit more from telemedicine visits that have become common practice during the coronavirus crisis. Watch as respected CLL expert Dr. John Pagel explains.

See More From the CLL TelemEDucation Empowerment Resource Center

Related Resources:

 

How Will Telemedicine Impact Time-Limited Therapy in CLL?

Will Telemedicine Be Part of Routine Management for CLL?

What Subset of CLL Patients Should Utilize Telemedicine?

 

Transcript:

Stephanie: 
Now the pandemic has, of course, presented both challenges and opportunities for clinicians who are trying to manage diverse health conditions, and of course, we’re not just talking about COVID-19. So on the positive side, Dr. Pagel, what are the opportunities you see for CLL patients using telemedicine?

Dr. John Pagel: 
Well, you’re right, Stephanie, it isn’t just about COVID, but COVID has certainly changed the landscape of how we approach many patients in 2020 and now in the future moving forward and particularly with regards to telemedicine. And that’s particularly relevant to CLL patients in particular. CLL, remember is a chronic disease, it’s of course, part of the name chronic lymphocytic leukemia, and people will live with this disease for many, many years, perhaps even decades, and often not even be getting therapy but still have, of course, the disease.

And they need to be monitored, and they are commonly monitored with what we call active surveillance. And active surveillance is typically, as the audience well knows, periodic evaluations with physical examinations and perhaps even some laboratory blood work that’s done on an associated visit. And because of the need for those things over the last many years of how we follow people, with active surveillance, people. We have seen frequently in the clinic, and perhaps in some ways they’ve been seen when they perhaps could be evaluated and taken care of in a different way, and that’s where telemedicine comes in for select appropriate CLL patients. Where maybe we don’t need to bring them in to see their provider, they can get labs done perhaps locally at their primary care physician’s office, if the labs need to be done. And often the physical exam can be even done by video or — so by showing the provider what might be going on, and lots of times that physical exam may not even be important.

What do I mean by that? We’ll remember, there are lots of times where even if you have a lymph node or two around, we’re not going to actually institute or change treatment. So there’s a very unique important population of people with CLL who could obviously benefit from telemedicine moving forward. 

Empowerment Tools for Nurturing Your Health During Stress

The pandemic has distorted our livelihood and forced many of us into teleworking whether we were willing or unwilling. We’re plastered to our computers not just in the home office, but at our kitchen tables, or on the bed. We find ourselves having to make adjustments on a regular basis. Responsibilities may have been added to your already hefty plate. Your new work environment may not be favorable. Maybe you simply can’t concentrate. We just can’t seem to escape the pings and alerts from work colleagues. Working from home is new to many of us. However, the concept of work-life balance is not. Yet, instead of home being a sanctuary, it has become a boundless environment for work and stress. Through this journey, we can relearn what work-life balance is, and how intervening factors like stress meddle with our body and mind. We can learn the value mindfulness has in creating boundaries that benefit our health and productivity, and be empowered with tools to build and sustain our immunity.

In the moments we’re experiencing stress we don’t stop to think about the effects it can have on our mind, body, and soul. Being overworked, getting familiar with remote working conditions, or trying to make child-care arrangements can be awfully difficult during a pandemic (Harnois & Gabriel, 2002). Stressors such as these can drive workers into depression, cause sleep disorders, body aches and headaches, and lead to other short- and long- term effects. Job-related stress can affect our immune system by lowering our resistance to infections. Brace yourself, we’re about to hop on the science train, but only for a few stops so you’ll be fine.

Who turned off the lights?

Stress flips the switch on the central nervous system causing it to go into defensive mode (Han, Kim, & Shim, 2012). The body reacts in efforts to regain homeostasis or regain balance. As previously mentioned, stress has the ability to cause depression, sleep disorders, body aches, and a lower immune system. Did you know that stress, sleep, and immunity are related (Han, Kim, & Shim, 2012)? Small immune signaling proteins called cytokines aid in regulating sleep. When these proteins fail to perform properly due to stress, this interrupts phases of sleep. When experiencing this stress, an irregularity in the secretion of the hormone Cortisol occurs.

Depression is a common and complex disorder with the ability to affect your daily life including work and productivity (National Institutes of Health, 2016). The hippocampus, amygdala, and the prefrontal cortex are three parts of the brain that seem to have major roles in depression (Cirino, 2017). When we experience depression, Cortisol secretion increases causing chemical imbalances which can lead to the reduction of brain cells (neurons). In a Korean study published in Stress and Health, individuals who experience work-related stress are at a higher risk of experiencing major depressive issues (Lee, Joo, & Choi, 2013). Symptoms associated with work-related stress include a reduction in the ability to concentrate, fatigue, insomnia, and feeling counterproductive.

An increase in proinflammatory cytokine levels can cause inflammation within the body (Leonard, 2010). This can lead to major depression followed by type 2 diabetes and other inflammatory diseases. Cytokines are involved with adaptive immunity and have been linked to COVID-19 infections (Costela-Ruiz, Illescas-Montes, Puerta-Puerta, et al, 2020). Weakened immune responses have been linked to patients with comorbidities. While the available information regarding COVID-19 is ever changing, what we do know is severe pre-existing conditions, including pregnancy, are linked to weakened immune responses placing these individuals at a higher risk of contracting the virus.

Road to Redemption.

Now that we have a better understanding of stress, learn to set your boundaries to alleviate it. Establish boundaries in all aspects of your life, especially with work. This ensures that your needs and your health are placed at the forefront. Think of them as safeguards for yourself. As difficult as it may be to establish them, understand that they are without question essential for your efficacy in and out of work. Working without boundaries is when stress raids the mind, body, and soul creating an imbalance. Here are a few practices to reclaim your balance: be mindful, create a workable workspace, listen to your body, reevaluate your time, say no.

Being mindful is having that ability to find calm in times of chaos. Be conscious and aware of the moment, relax, and BREATHE. Only you are in control of you. This is a type of meditation that can be implemented in your daily life at any moment. Let’s take a few moments to practice. Stop what you’re doing, turn off the TV, put your laptop to the side, get comfortable, and gently close your eyes. Take a deep breath in, then slowly exhale. If you hear noises, leave them be, continue to breathe. Do this for about 5 minutes. This practice is to help you find your calm, clear your mind, and become hyperaware. This method of nurturing your mind and body has the ability to mitigate stress, anxiety, improve sleep, and improve attention (Mayo Clinic, 2018). There are many practices for mindfulness which can be found on the Complete Guide to Mindfulness.

We are no longer in our offices or confined to our cubicles so we must create workable workspaces, and implement our boundaries. Yes, your new comforter was just shipped from Amazon, but allow the bed to be a place for rest not work. Create a space to enhance productivity yet allow comfort. Here are tips to transform a section of your home into a conducive workspace:

1. Invest in a quality chair and desk/or small table

  • Maintain good posture. If you feel yourself slouching, readjust or move around We want to avoid body aches, so listen to your body. Be aware of its needs.

2. No desk?

  • Use the kitchen table or counter, a coffee table (make sure you have some sort of back support).
  • If you must use your bed because your room is the only place of silence, ensure your bed is made. Sit on top of your new comforter with your back against the headboard

3. Good lighting is a must.

 

4. Keep your workspace organized using bins and folders

  • Disorganization is distracting, limits movement, affects motivation, reduces your performance, and shows lack of control (Roster & Ferrari, 2019).

5. Do not let work leave your workspace. The rest of your home should be designated a non-working area.

Listening to your body is an aspect of creating boundaries. Do not let work interfere with your health. Know when to get up to stretch, grab water, have a snack, or take lunch. If you must, inform your team of the time you will take lunch daily. Having good nutrition is the first thing that will ensure we’re energized and healthy. Instead of ordering something to go for lunch, try meal prepping. Use Sunday as the day to prepare and organize your meals for the week, including your snacks.

Restock on the elderberry! Since we’re all being hyperconscious of where we venture in the world, incorporate things to boost your immune system such as Emergen-C and elderberry. Elderberry is a substance extracted from the elder tree which many use as a dietary supplement to help boost their immune system. It can be consumed in the form of syrup or even gummies. Disclaimer, before the use of any dietary supplement it is best practice to consult your healthcare provider.

Reevaluate your time. You may find that during this time you have accumulated more than 40 hours a week. It’s fine to work additional hours sometimes, but this takes away time from caring for yourself. It interferes with your work-life balance. Although we’re home, this shouldn’t equate to extra time to tap on computer keys. Reevaluating your time takes a level of mindfulness to understand the importance of taking care of you: your mind, your body, your soul.

Saying no can be difficult, especially to a loved one or your boss. However, you should listen to your mind, be aware of what you are capable of, and respect your time. Knowing when to say no in some respects may be less difficult than others. Saying no is powerful. It is the ultimate boundary we can create for ourselves and it is okay.

Our fight with this global pandemic has yet to near the end. If we are equipped with the tools to tackle our stress and adjust as needed, we may be equipped to continue our lives teleworking. We have learned to understand the deteriorating effects stress has on our health. It can disrupt sleep patterns, make us susceptible to depression, and weaken our immune systems. Each one of these conditions are tightly tied together by stress which we must keep unbound. However, the tools to reclaim our balance will aid us in this situation. Being mindful, creating the awareness we need to breathe and focus for productivity in work and life, will assist us in creating needed boundaries. Whether these boundaries are centered around a conducive workspace, listening to our bodies, reevaluating our time, or simply saying no, it is a necessity to properly control and lessen the amount of work-related stress we experience in these crucial times.


References

Cirino, E. (2017). The effects of depression on the brain. https://www.healthline.com/health/depression/effects-brain#1

Costela-Ruiz, V. J., Illescas-Montes, R., Puerta-Puerta, J. M., Ruiz, C., & Melguizo-Rodríguez, L. (2020). SARS-CoV-2 infection: The role of cytokines in COVID-19 disease. Cytokine & growth factor reviews, S1359-6101(20)30109-X. Advance online publication. https://doi.org/10.1016/j.cytogfr.2020.06.001

Han, K. S., Kim, L., & Shim, I. (2012). Stress and sleep disorder. Experimental neurobiology, 21(4), 141–150. https://doi.org/10.5607/en.2012.21.4.141

Harnois, G. & Gabriel, P. (2002). Mental health and work: impact, issues, and good practices. https://www.who.int/mental_health/media/en/712.pdf

Lee, J., Joo, E., & Choi, K. (2013). Perceived stress and self-esteem mediate the effects of work-related stress on depression. Stress and Health, 29(1), 75–81. https://doi.org/10.1002/smi.2428

Leonard B. E. (2010). The concept of depression as a dysfunction of the immune system. Current immunology reviews, 6(3), 205–212. https://doi.org/10.2174/157339510791823835

Mayo Clinic (2018). Mindfulness exercises. https://www.mayoclinic.org/healthy-lifestyle/consumer-health/in-depth/mindfulness-exercises/art-20046356

National Institute of Health (2016). Depression basics. https://www.nimh.nih.gov/health/publications/depression/index.shtml

Roster, C., & Ferrari, J. (2019). Does Work Stress Lead to Office Clutter, and How? Mediating Influences of Emotional Exhaustion and Indecision. Environment and Behavior, 1391651882304–. https://doi.org/10.1177/0013916518823041