Transcription:
The Importance of Supportive Care for Urologic Cancer Patients

Melanie Cole (Host): The Supportive Oncology Program at Northwestern Medicine provides tailored emotional and practical support for patients and families coping with the challenges of a cancer diagnosis, treatment, and recovery, and really how supportive cancer care optimizes outcomes for patients.

Welcome to Better Edge, a Northwestern Medicine podcast for physicians. I'm Melanie Cole. And today, we're speaking with Mandi Buss. She's a clinical social worker in the Supportive Oncology Program at Northwestern Medicine Polsky Urologic Cancer institute. Mandi, it's a pleasure to have you join us today. I'd like to first start with a little background on supportive cancer care. Is this common? Is this new? Are there gaps in supportive care that have been identified over the years? Tell us a little bit about that.

Mandi Buss: Sure. Thank you, Melanie. And thank you for having me today. Supportive care in the context of oncology is a fairly new field. It's been a growing area of care, I would say over the past few decades. So the term psycho-oncology, wasn't really coined until the 1970s, and that was by Jimmie Holland, a psychiatrist out of New York City Memorial Sloan Kettering. And she had really identified at that time the impact of a cancer diagnosis and the impact of treatment on an individual, on couples, on families, moving throughout the cancer trajectory, with the understanding that the trajectory can have so many different directions, whether it's survivorship or looking at terminal illness or survivorship with significant disability.

So since that time for the past several decades, researchers, direct service providers have been looking to really optimize the psychosocial care being provided to support patients in a more individualized, more compassionate way as they move through cancer treatments.

Melanie Cole (Host): Well, it certainly is a burgeoning field right now. I'd like you to tell us about the services that are part of Northwestern Medicine's Supportive Oncology Program. For other providers looking to refer or to start a similar program, what are some of the key elements as you see it, Mandi? Whether it's prevention of new diagnoses, surveillance for recurrence, assessment, as you talked about survivorship, side effect management. Tell us a little bit about that coordination of care between patients and healthcare providers and what the services are that Northwestern Medicine offers.

Mandi Buss: Our services under the supportive oncology program are very much focused on consultations and treatment for different psychosocial needs that emerge throughout that time of diagnosis, the time of treatment, at the time of surveillance, and even that time nearing end of life. So much of our services focus on quality of life and adjustments and coping. To be more specific, we can look at the members of our multidisciplinary team. We have social workers, nutrition services. So these would be our registered dieticians who focus on oncology-specific nutrition care, our health psychologists, who not only provide therapy, but manage much of the psychosocial research that we do under our program. We also have a fertility preservation program under our umbrella, an adolescent young adult cancer navigation specialist, a breast cancer nurse navigator, and a tobacco cessation specialist team.

Melanie Cole (Host): That's a very comprehensive multidisciplinary team. Mandi, tell us your role in the supportive oncology team. What's your approach to supportive care for the patients?

Mandi Buss: I'm a clinical social worker and a certified oncology social worker. So my role is meeting patients where they're at, at any point throughout the cancer trajectory. Sometimes it's that diagnosis. Sometimes it's much further down the road. My role encompasses all aspects of psychosocial adjustment, coping, and support. So that's everything from the more emotional end of the spectrum, so managing distressing emotions that come up in the context of treatment all the way over to the more practical end of the spectrum, which would be managing issues and barriers to accessing care, things like transportation, prescription costs, other complicated logistical aspects of managing life with cancer.

Melanie Cole (Host): And what are some of the most common of those psychosocial symptoms that we're talking about here today, and that you see in specifically urologic cancer patients and how do you identify those needs of the cancer patients and survivors? Tell us a little bit about that.

Mandi Buss: Anytime I'm meeting with an individual who has a cancer diagnosis, my first step is really taking a full assessment of this person's life. The challenges they're managing as well as the strengths that they're bringing into their cancer story. I think oftentimes for urologic cancer patients, when we're thinking about the more emotional psychosocial symptoms that emerge, it's not uncommon to see anxiety, acute distress, feelings of grief, grieving, as well as I think some more of the more physical pieces like medical fatigue or physical symptoms of anxiety and distress as well as financial strain or barriers to accessing care. So in managing that, part of my role is not only helping identify those alongside a patient, but really validate the significance. Not just normalize that these challenges would come up in the context of cancer, but really validate the weight of any one of those things for a patient. A cancer diagnosis represents a huge shift to any person's assumptive reality. Dealing with that shift can be incredibly disorienting. So part of what I try to do in my work is provide a little bit of an anchor point, help patients find some footing during a very confusing uprooting time and connect them with resources that might be relevant and useful to them along the way.

Melanie Cole (Host): It's such a comprehensive program for something that is really an all-encompassing diagnosis and can, as you say, affect all parts of your life and many parts of your family's. So what do we know about how supportive care measures improve the outcomes of patients with cancers and urologic cancers?

Mandi Buss: Supportive care, supportive oncology has an enormous impact on quality of life. There are no shortage of quality of life measures and studies that have showed the impact of not just social work support, but nutrition support, educational support, nurse navigation in managing a cancer diagnosis and how that really enhances a patient's experience going through treatment as well as their coping and their capacity to adjust, and not just a diagnosis, but I'm thinking about adjusting to any transition point in treatment. Coping with the physical challenges of a treatment plan, coping with moving on to the next phase of treatment or running out of treatment options, coping with end of life.

So the outcomes we see is really connected to the mind-body connection. The more we can do to support a person's mental wellness, their emotional wellness, their ability to communicate what they're going through and the capacity and self-agency to access resources and access supports as they're going through it, the better off that patient is going to be across the entire trajectory.

Melanie Cole (Host): Well, I agree with you. And there are many studies that show how it impacts those patient outcomes. Before we get ready to wrap up, tell us about the referral process between the Department of Urology and Supportive Oncology at Northwestern Medicine and really survivorship resources that you would recommend to physicians looking for more information on how to support their urologic cancer patients.

Mandi Buss: The referral process here is fairly straightforward for any patient who is receiving their care at Northwestern. A physician can enter an order for supportive oncology services and it asks which services you'd like to select within the Epic form. And that would include all options available, social work, psychologist, nutrition, tobacco cessation.

The other option is that we have many patients self-refer. So sometimes it might be more empowering to hand the number of our program to patients and have them call directly to reach out and seek that support. It's kind of depends on the patient and what they're ready for at any given time.

And then as far as resources, I would recommend there urologic cancer patients. A few that come to mind, the first one would be BCAN, the Bladder Cancer Advocacy Network, which is not only a great source of information and education, but I think specifically providers can get a good idea of the psychosocial challenges that our patients are managing by seeing the information and seeing the support offered by that program.

Another one that comes to mind is Zero Cancer. Zero Cancer recently absorbed Us TOO. Both of these organizations have been involved with empowering patients with prostate cancer, and their caregivers. So there's some excellent information for coping with that trajectory, not only as an individual patient, but as a couple in a partnership in that caregiving relationship as well.

Beyond that, I think for supporting our patients in survivorship, it's always helpful to look to the local cancer resource centers. So here downtown in Chicago, that would be Gilda's Club, Wellness House. They offer a wide range of programming, everything from stress management and meditation programs to support groups that are diagnosis-specific to survivorship seminars and workshops that look at managing anxiety around fear of recurrence and other common themes that come up throughout the cancer trajectory.

On the logistical side, I always recommend Cancer and Careers and Triage Cancer These are two organizations that focus on the legal and financial impacts of a cancer diagnosis and treatment. For providers, there are special pages on each of these programs' websites that give healthcare providers insights in how to support their patients, managing re-entry into the workforce or managing leaves off of work. At the end of the day, though, I would say for any patient coming in here, getting referred to our program, oftentimes as a social worker, I'm not only providing supportive counseling, but sometimes operating as that switchboard, making sure that they are getting connected to the right services, whether it's internally or these great community resources that can also support a patient's well-being.

Melanie Cole (Host): Thank you so much, Mandi, for joining us today and sharing your expertise. And to refer your patient to the supportive oncology program at Northwestern Medicine's Polsky Urologic Cancer Institute, please visit our website at breakthroughsforphysicians.nm.org/urology to get connected with one of our providers. That wraps up this episode of Better Edge, a Northwestern Medicine podcast for physicians. For updates on the latest medical advancements, breakthroughs and research, follow us on your social channels. I'm Melanie Cole.