Patients with cancer who participated in an oncodermatology clinic reported improved quality of life while undergoing treatment, according to a recent study published by researchers at George Washington (GW) Medical School. Adam Friedman, MD, director of the GW Oncodermatology Clinic, discussed this study with The Dermatologist, as well as areas of future research to improve patient care and the impact of COVID-19 on caring for these patients.
Findings from the 55 participants who responded to an online survey between May 1, 2017 and November 1, 2019:
- Before treatment, average quality of life score was 6.5 (moderate effect)
- After treatment, average score quality of life was 3.8 (small effect)
- Patients reported satisfaction with their treat (average score 4.15)
- Improvements were found in all quality of life categories, including embarrassment, physical symptoms, impact on social life, close relationships, etc.
- Embarrassment had the greatest different in score reduction.
- Itch, pain, and soreness was the only physical symptom that did not show significant decrease in score.
- Lowest score was on the impact of supportive oncodermatology on treatment adherence (score 3.67; neutral to satisfied)
Dr Friedman is a professor of dermatology, the interim chair of the department of dermatology, and the director of the supportive oncodermatology clinic at George Washington Medical School.
Aizman L, Nelson K, Sparks AD, Friedman AJ. The influence of supportive oncodermatology interventions on patient quality of life: A cross-sectional survey. J Drugs Dermatol. 2020;19(5): 477-482. doi:10.36849/JDD.2020.5040
Melissa: Hello everyone. Dr Adam Friedman is back today to discuss his latest study, which he did with his colleagues at George Washington Medial School. His study assessed the impacts of George Washington’s Oncodermatology Clinics on quality of life among patients being treated for cancer.
Dr Friedman is a professor of Dermatology at George Washington Medical School, and also director of the Oncodermatology Clinic.
Thank you for joining us. Before we get started, would you mind sharing with us some information about your clinic and how it is currently handling the coronavirus pandemic?
Dr Friedman: Sure. We’ve evolved over the past couple weeks in response to the COVID pandemic, and the immediate cutoff of essential and non‑essential patients, in terms of who we’re seeing live. It’s really been somewhat of a hybrid clinic, predominantly focusing on telemedicine. I think a silver lining for everything going on is that we have adapted to incorporating telemedicine into our daily practice, something that would have probably taken years, in a matter of weeks. I think we will take those skills and continue to utilize them even post‑pandemic, if that even is a thing, hopefully, at some point.
Given our ability to utilize, we in particular are using Zoom, we’ve worked in a scheduling protocol for our schedules, also our licenses to put patients in our EMR schedule, but also schedule the Zoom appointments. We’ve ramped up pretty quickly. For example, just this past Monday, in a resident clinic, and I’ll talk about how we structure that in a second, in a resident clinic where I was overseeing three residents, we saw 33 telehealth visits between the three of them.
Because there’s so much unknown, even with all of this adaptation, quick onboarding, the way we’re structuring the telehealth clinics is that we are still coming in, though socially distancing. All of us are in different rooms, and we are treating the device that we’re using to have this telehealth visit, whether it be a computer, laptop, iPad, or even an iPod, one that has an updated camera, an iTouch, I think is the newer term for it, and we’re treating that like the patient.
The patients are being triaged as though that device were right there in front of them whence the resident goes through the history, does the exam to the best of their ability. They come get me. We talk about the case. This is really where the education is critical because obviously a lot of the way our residents learn is through hands‑on teaching, teaching on the fly in clinic. I really try to maintain the structure of the resident clinic as much as humanly possible. We have that discussion, six feet apart. We then go into the room together. I then see what the resident saw, and then let them take over to really execute the plan we discussed prior to my entering the room.
This has worked very well. If anything, I feel like these clinics run very smoothly. One of the tricks that we’ve learned to enable that kind of effortless nature is our MAs, who now are not physically bringing patients back, are calling every patient about five minutes before their appointment time to confirm that they have their link for the Zoom meeting, that they have their AD capacities there, they know what they’re doing, answer any questions.
This does two things. One, it gets them ready to start their visit on time so we stay on time. But two, I’ve got to tell you, the patient’s satisfaction associated with that phone call is through the freaking roof. I mean, patients are ecstatic. I’d say, maybe eight out of ten times, they have no questions, they’re ready to go, but they just are so appreciative that you took that extra step to ask them if they were ready. It’s been incredible.
Now, we are still seeing essential patients. These range from maybe three or four patients a day. These are patients who you just can’t manage with telehealth. You either need to do a biopsy to rule out a potential malignancy, a patient is on a very complex regimen, or maybe it’s something new that really needs to be evaluated in office. For example of that is a referral for a patient with a peristomal pyoderma gangrenosum. That’s not something you really should be handling through telehealth in terms of doing good local wound care, but also going over a therapeutic regimen, which probably will require some screening labs.
We’re trying to keep people safe, but, when needed, we are still seeing patients live, but doing everything in our power to maintain social distancing. Everyone in our clinic, doesn’t matter what their role is, if they’re in a patient‑facing area, everyone has to wear a mask. This is a GW mandate. We’re all wearing gloves, we’re wiping everything down, we’re doing the best we can.
Melissa: Could you elaborate more on how that call is helping patients with their telehealth visit?
Dr Friedman: The phone call is really primarily to ask, “Do you know what you’re doing? Do you have any questions about getting onto Zoom?” A lot of times there, the patient doesn’t even remember the email they got.
They’re like, “Wait, what? There’s an email? There’s a link?” It happens. I think our schedulers are trained to tell the patient as soon as they make that appointment to download the Zoom app immediately. In the PDF that’s emailed to them as part of their appointment, there are highlighted sections telling them exactly what to do, yet we all know not everyone follows directions.
Because of that, this phone call is our safety valve. As I said, there are a lot of patients who are ready to go. They’re like, “Oh, I didn’t know it was time yet,” and they’re reassured it wasn’t, it was just a check in. But there are a good number of patients who have no clue that they even received an email with a link. We’ve had to actually resend the email or provide the meeting ID multiple times, but because we’re calling in advance, it keeps us on track, keeps us on time.
The primary role of that phone call is to ensure technical competency, but it’s also to answer any questions or to troubleshoot right before the visit.
Melissa: Switching to your study on patient satisfaction and your oncodermatology clinic. What led you and your colleagues to conduct the study?
Dr Friedman: We created the supportive oncodermatology clinic in 2017 as a result of a clear and unmet need, specifically at GW within the cancer center. Though, I definitely cannot take credit for being so innovative and identifying this unique unmet need. I certainly had help. I want to give a shout out first and foremost to Mario Lacouture, MD, at Memorial Sloan‑Kettering, who could be considered the Godfather of supportive oncodermatology. Many of the centers or clinics that popped up around the country are direct results of his acolytes.
One of whom Dr Beth McLellan, who is at Albert Einstein College of Medicine and heads up their supportive oncodermatology program, was one of the first points of contact I had to this field. When I came down to GW in 2015, seeing the cancer center rapidly growing, a lot of investment into the cancer center, it’s always a good way to approach a new job, see where the money is flowing, see where the interest lies.
Certainly, the cancer center was a major focus for the University and knowing what I knew at the time having worked with Beth, hearing Mario’s speak at various meetings, there clearly would be a need here because practically every patient undergoing cancer treatment will experience some hair, nail or skin side effect. That’s really where it took off.
At the same time, my mother‑in‑law was going through treatment for breast cancer. I saw it from the other side as being a family member and also caregiver for a family member who is experiencing this various side effects we are trying to mitigate as well as potentially even prevent with research. It all came together from both sides to really push the formation of this clinic.
Now, starting the clinic, there were certainly challenges which I can go into. After doing this for a couple years, granted we could say and be very biased, “Yeah, of course our patients are happy. Look! We’re offering them a service that they wouldn’t get otherwise. We’re helping them with common skin ailments that occur during treatment to make that treatment course more tolerable. Of course, they’re happy.” but that’s not science. You need data.
At the same time, while it’s great to get some data to pat ourselves on the back or to give us direction in terms of what we need to do better, we need data to support the overall growth of the field, to stimulate others to get interested, and also to point out why programs like these are needed everywhere, even more importantly, why this education, why this clinical area needs to be part of standard residency training.
For all those reasons, we came together and decide, we’ve two years under our belt now, now is a good time to look at how our patients experience this relatively new approach.
Melissa: What were some of the most notable positive findings in your opinion from this study?
Dr Friedman: I think we tried to structure the study in a similar vein to a lot of the other DLQI and patient satisfaction questionnaires that have been heavily published on in many disease states in dermatology like atopic dermatitis, hidradenitis suppurativa, hyperhidrosis. So, we’re really trying to mimic that flow and not just say, “Hey, are you happy or not?” but really have some validated structure to the way we engage these patients.
I think there were two key findings here that are probably generalizable. First off, overall, the improvement in DLQI before coming to when they actually went through the program did improve. This was the statistically significant. This certainly was not a huge surprise. Elements related to quality, like embarrassment, impact on social life and leisure, work, or school, impact on close relationships, all those improvements. That should not come as a surprise, but it’s always great to validate that and really have the data to support this claim that’s not just anecdotal.
To me, even more importantly, was the—not negative, but not super positive—data in that patients felt pretty neutral about how these interventions enabled them to keep with their cancer treatment. Now, I didn’t say it is strongly improved or it hindered, but they didn’t really know. That was really the response that they really didn’t know how much of an impact these measures had on their overall course.
Why I love this data. I was hoping that would be, part of me is hoping. It’d be great to get that pat on the back, but part of me is hoping that that’s what would come through because we need evidence‑based treatments. We need research to support various algorithms to address specific and maybe some nonspecific findings we see with the litany of drugs we use, both chemotherapeutics and targeted therapies. While everything we throw at this certainly helps, a lot of this is anecdote and not evidence‑based. We have some things that are mildly evidence‑based, but not a ton.
I think this, the great thing about this study, is to push that point home that industry needs to invest in this research. That clinical investigators need to be interested and be creative and do the research necessary so that someone coming out of training or someone who’s been out for years can look in a journal and say, “Wow, look at the study. Look at how this compilation of approaches or even just one approach mitigated or possibly reversed this particular side effect, and now I’m going to use that in my practice.”
The number of cancer cases are only going to continue to increase. If more of these patients surviving with better treatments that’s becoming more of a chronic disease for many, but these side effects not only occur during treatment, they can persist even afterwards.
We need to have better approaches. This study highlights that even in a dedicated center, a dedicated group who would spend more time than simple patients, had resources, had experience. Even with all that, it was OK. It wasn’t amazing, it was OK.
It highlights a need for more research, which we sorely need, which myself and others who oversee these types of clinics are doing, but we need more. We’re talking about single digit individuals here in terms of the numbers. We need more people engaged and we need funding to help support these initiatives.
Melissa: That’s a really interesting points in your study, especially because the mission would be to improve treatment adherence, but If patients aren’t sure, then it’s hard to connect that.
Dr Friedman: Exactly.
Melissa: Do you have any other thoughts for why patients might not be sure about that? On the flip side, do you think oncologists would have responded similarly to that question?
Dr Friedman: I think the question posed to patients, did our intervention impact their treatment course and allowed them to stay on their treatment course, is a little tough because I assure you most patients don’t know that depending on the severity of their hair, skin and nail reaction, the oncologist may decide to half their dose or even give them a treatment vacation. Maybe there is some bias there in the sense that they’re not aware that this could actually be a problem.
This goes to a bigger issue, and the point of how would oncologists approach this? We have data showing that, at least historically, oncologists don’t look at these side effects with the same lens as the patient. Meaning that the severity or impact of quality of life of a lot of these side effects, oncologists don’t necessarily digest the same way in that they sometimes are actually happy these side effects are happening. We know that some of the target therapies, the side effects indicate that the patient is responding.
It could be a red flag that they’re doing well. The oncologist, forgetting then not necessarily being concerned, they’re actually excited. Whereas the patient in these studies have been shown that their perception and their experience is much more severe. It’s rated on a higher level than the oncologist would have rated it. There is a disconnect there. Now, that’s older data. Maybe that has changed given the kind of percolation of education and lectures and papers in the support of oncodermatologists space. But historically, that was the perception.
There may be bias in the sense that patients didn’t even know that that was an option. That if you did not treat their side effect, their therapy could have been stopped. Maybe they didn’t even know. It is hard to interpret, but regardless of what the reason was, once again it highlights we need clinical studies. We need creative approaches. We don’t have a lot.
There are a handful small studies, case series utilizing different approaches, but that’s bare bones. We need drugs or devices being pursued with the indication for specific side effects. This is happening. There are groups going after this, but it’s still under, in its infancy.
Melissa: Going off of that, what are the areas of future research that you’re hoping your study highlights the need for specifically?
Dr Friedman: There are a number of different adverse events that could benefit from a deep dive in terms of both mechanistic studies as well as clinical trials developing new approaches. Right off the bat, pruritis, itch. It is a side effect both direct but indirect in terms of if a particular drug causes severe cirrhosis, that can lead to itching as well.
Pruritis is pretty common with many different oncologic drugs. It is a disease unto itself, even though we’re describing it as a symptom here. There has been some work using specifically aprepitant, which is a neuroendocrine receptor inhibitor in its ability to impact itch in this setting, but not a whole lot else. There’s not a lot of this that I’m aware of.
A lot of what we do is taking bits of data from other areas and utilizing those approaches. Whether it be light therapy, off‑label SSRIs, or using anti‑neuroleptics like gabapentinoids, using anti‑opioids like naltrexone. This is just based on our management of itch in other areas, not specific to this.
Itch could be very, very disabling. We know so much about it from parallel disease states in dermatology, especially atopic dermatitis, which is a very unique itch. That’s certainly one area.
Then you start to get into unique and maybe a little broader types of side effects. Anagen effluvium, which is often combined with telogen effluvium from chemotherapies, that certainly is an area that while it has the DigniCap approved, which is a cooling cap, certainly I think more could be done there. There’s data suggesting that some women refuse treatment for their cancer directly because of their fear of losing their hair. The fact that someone will not get life‑saving treatment because of that, that to me is a huge red flag. We need to certainly address that.
Nails is another one. A lot of things go wrong, not just the nails but the paronychia space. You can see chronic severe inflammatory paronychia associated with certain treatments. You can see onycholysis, onychoschizia, onychorrhexis. A lot of horrible things can happen to the nails that can in some percent, even sometimes is as high as 20%, in patients be permanent, which can be very disabling. As of right now, there is nothing technically approved or studied.
In this field, I personally have used nail protectants or hardeners that creates films over the nails. I’ve used topical steroids, half white vinegar, half water soaps, which is the anti‑inflammatory, anti‑microbial because these patients are at higher risk for infections. I also like using tazarotene specifically, it’s a strong retinoid, along the paronychial fold to maybe help regulate how the nail’s making itself, but this is all anecdotal.
The other thing to think about is decrease in flow. Just like the DigniCap, the cold cap, decreasing flow to the nail bed when patients are receiving chemotherapy using cold gloves, ice baths, and I’ve been using off‑label vasoconstrictors like brimonidine or oxymetazoline, applied to those areas 30 minutes before they get their infusions. Once again, this is all anecdotal and just grasping at off‑label straws. That’s a huge unmet need, because there’s really nothing there.
When you get to more specific adverse events that are almost expected, like the papulopustular eruption of the EFHR inhibitors and HER2 inhibitors, thanks to Mario, we do have some data using certain regimens. There are some case reports and series using isotretinoin, for example, even some case series using colloidal oatmeal‑based products.
It’s a small compilation. We need more there, hands‑foot syndrome of multikinase inhibitors. There’s one study looking at diurea to help, prevent, and treat, but once again it’s a small study. Across the board we need more for the specific side effects, but the more generalizable effects that can occur with any cancer therapy like hair loss, like dry skin, like nail disease. There certainly is a paucity, so I’m hopeful that this study, among others, will serve as a cheerleader for those new studies for people to get interested and involved and do the work that needs to be done.
Melissa: Going back, could you elaborate on some of the challenges you experienced while launching your clinic?
Dr Friedman: When we first launched the Supportive Oncodermatology Clinic in 2017, I thought we’d be opening the floodgates, and were going to be inundated with patient referrals from the cancer center because literally, any patient going through there should technically be coming to us.
Whether it be preventive strategies for things we know will happen with their cancer treatment, whether they’re actively in treatment and experiencing these, or even they were done with their treatment. We know that patients who had any type of cancer are increased risk for skin cancer, and so these patients definitely at a minimum need yearly skin checks.
I thought we’d be opening the floodgates. I prepared for it. We created a specific scheduling team, a handle that people sent messages to within our electronic medical records. I had a dedicated person for scheduling. She was more a coordinator. We created these fancy‑schmancy handouts, and we sent everyone an email blast...Crickets! Complete crickets, nothing.
It was like a little dribble out of a faucet, maybe for one or two people, but that was it. I was surprised, but I wasn’t going to be defeated, so the next step was to really get the word out there giving grand rounds for oncology, meeting with the infusion nurses early in the morning with my team.
We did some media around it, so I hired a media consultant. We were very fortunate to partner with La Roche‑Posay with unrestricted philanthropic funds that they gave us to support this initiative. I used some of that money to help do some local media to let everyone know in the community that we had this, this was unique to GW.
Certainly, if they, as a physician, they had patients who would be appropriate, send them our way. I even spoke at local support groups for cancer survivors. Those definitely made a difference. In hindsight, I wish I did that before we launched. I will say, I did give that oncology runarounds right as we were launching. Right as that money was coming in, right as we were launching, I timed that appropriately, but even that was not enough.
It’s also been ongoing. To give one lecture, not going to cut it. You’ve got to keep going. We’ve done journal after journal club with the hem/onc fellows. We’ve done more grand rounds. Speaking at local and national meetings, and then taking that information and recycling it and sharing it with the local oncology folks.
It was surprisingly a challenge and what’s really important is to get it right the first time. Let’s say you do get an influx and your scheduling team isn’t prepared or you don’t have availability, that will kill it. You drop the ball once, those referrals will stop coming.
We started the program doing this a full day once a month. That didn’t work because a lot of these patients are coming frequently for their infusions. Some of this we do it in the morning, in the afternoon. The patients would prefer the other time. I quickly learned that having a specialty clinic like this only once a month really didn’t facilitate its flow. We changed it in that we have protected slots weekly morning and afternoon once a week to get these patients in.
That made a huge difference in terms of flow and also in terms of the willingness for the infusion nurses, the oncologists, the oncology fellows to send those patients because most likely, the patient will only have to wait at most maybe five or six days before being seen by us.
On the other side of that, especially with everything going on now, we’ve been employing telehealth to access these patients. We really want to limit the mobility, especially of these patients. We’ve been doing a lot of telehealth as source for our supportive oncodermatology patients. That has worked really well.
I would have liked to initiate that even a year or two ago. However, with the restrictions in terms of reimbursement, it wasn’t possible. Now I’m hopeful that these waived restrictions will be maintained and we can continue to offer these services through telehealth, because a lot of these things can be managed through telehealth, truth be told.
That has made a big difference, and so we’ve become quite busy, and to maintain that level of engagement. But still I encourage anyone listening, don’t rest on those laurels even if you’re doing a good job. You have to keep it up. I just gave journal club to the hem/onco fellows a week or two ago via Webex, because obviously we can’t get together.
You’ve got to maintain that very visible interest in the space, because people will quickly forget. There’s a lot going on for these patients. If you want the oncologist, just think about the skin, hair and nails. You need to be visible. So, I encourage you, if you’re interested in creating this type of clinic in your practice or at your institution, that you take a multifaceted approach. Not just enough to create the clinic, you need to really engage and make yourself accessible to the oncologist day or night so to speak.
We have TigerText, which is a HIPAA protected texting service. The oncologists know that they can reach out to me regardless of what day it is via that texting program, and I’ll respond pretty quickly to the point where I sometimes will even get images of family members, because why not? That’s what you do with dermatologists. But it really does engender good will. I rely on them for those referrals and so I do it, and I get those referrals in.
Melissa: Thank you so much for joining us, Dr Friedman. And thank you for listening. If you enjoyed this podcast or have any questions, please let us know in the feedback box below. We really appreciate the feedback you send us.