Treating the Patient With a Focus on Quality-of-Life Considerations

Erin Kopp

Hi Katie. I’m glad we can talk about quality of life in our chronic GVHD patients. I know we have both talked a lot about all of the physical presentations of what a patient experiences and what we need to assess for, but GVHD in the chronic setting is nothing if not the combination of what's presenting in front of us subjectively and what we can see objectively.

I think everything turned the corner into being more patient-focused and we started talking more about patient-reported outcomes when Dr. Stephanie Lee completed her symptom scale.¹ I'm very familiar with it and I imagine you are as well. Do you use it in your daily practice?

Katie Sellers

Thank you for including me in this important discussion, Erin. I’m also familiar with the increased focus on patient-reported outcomes and the use of the Lee Symptom Scale. I’m finding that patients, through their social media platforms and support groups, are becoming more engaged in discussions about quality of life as they see inclusion of patient-reported outcomes with new pharmaceutical approvals. We're seeing a shift, not to just identification and management of the disease, but what that impact of chronic GVHD looks like on the whole person and their livelihood. Unfortunately, we have not integrated a symptom scale into regular daily practice, which is a common limitation for a community-based oncology practice. We have a task force that's looking to incorporate this into our day-to-day, so while we might not actually fill out and score the algorithm each visit, we are talking about it more with our patient population. While that’s a limitation of our center, I am hopeful we can find tangible ways to integrate this brief, 5-minute assessment at each visit in the future.

Erin Kopp

For people who are not familiar with the Lee Symptom Scale, it's a 30-item scale that asks patients how much they’ve been bothered by multiple factors concerning, among other things, their skin, eyes, mouth, breathing, eating and digestion, muscles, joints, energy, depression, anxiety, and sleeping.¹ There is the regular symptom scale and then the modified symptom scale² that you can use. In my experience, patients don't necessarily remember how they felt in the last month, which is what the original symptom scale looked at, so the modified scale allows for them to rate these factors on a Likert score of 0 to 4, based just on the previous seven days.

I think it’s been so critical to have this scale is because it opened the door for us to find a way to quantify something that's not thought of as quantifiable. We can ask patients how they feel and what's going on, but how do we make that objective? How do we incorporate that into continuity of care? How do we even apply that in the day-to-day clinical setting? The symptom scale allows us to make informed decisions. I see the scale being referenced quite often in multiple other studies now. So, it's almost like that's the litmus test, as in once you've been cited in a study, you've actually made it into a very heavily research-based field.

Clinically and practically, it was not something that we were using consistently in our practice. We have flow sheets to measure based on consensus statements from the NIH. “What are your symptoms right now in terms of how they physically present?” We don’t consistently include something like the Lee Symptom Scale. I’m wondering, was there evidence that drove you to be interested in the scale?

Katie Sellers

Traditionally with chronic graft-vs.-host disease, traditionally we tend to think about the most severe cases with the significant physical and emotional burdens. With patients who aren’t having distinct symptoms, or who don’t have any manifestations seen on a physical exam, it is easier to overlook more subtle signs and symptoms. In becoming familiar with the modified Lee Symptom Scale, we are able to better identify and quantify chronic GVHD directly from the patient. Often the clinician’s assessment and NIH Consensus scoring may not fully reflect the patient’s overall condition, hence why the scale was developed. This, in turn, allows us to have a better grasp on the patient’s disease, select appropriate treatments, and monitor for treatment response in a standardized approach. With the exponential growth in therapeutic approvals for the management of chronic GVHD, we are seeing this integrated regularly into clinical trials with patient reported outcomes. 

Using the modified Lee symptom scale, the APP can tease out signs and symptoms that may not come to mind as a traditional graft-vs.-host disease symptom, like loss of energy or increased need for napping or rest. These manifestations can have a significant impact on their lifestyle and subsequently, many  downstream effects on their overall quality of life. These scales are a great tool to help the APP discern how these patients are managing day-to-day. 

I think the modified scale, looking at the past seven days rather than the past month, helps us better grasp what's going on at the moment. It helps us make a more tangible assessment of where the patient is now and what is being impacted by their disease. We do a systematic head-to-toe assessment of GVHD each visit, but how do we bring this down to the patient level and ask, "How are you managing day to day, and how is this impacting your quality of life?"

Erin Kopp

Yes, we all like to believe that we practice in a space of patient-focused, patient-centered care. I don’t think we can overstate the importance of having tools and looking at patient-reported outcomes as a measure of success or a measure of gaps in our care. It really is critical.

One way that this helps us is in creating a focus on the patient. The way I approach it when I'm talking about quality of life is, first and foremost, asking the patient, "What is your goal in terms of your treatment? What do you consider success?"

And if they have a hard time with that, then we talk about things like quality of life and break it down in terms of the overall modifications that they're having to make to their life. And then we look at the symptoms you see in the Lee Symptom Scale. It allows us to help them filter through all of it and make some decisions about what's important to them.

Katie Sellers

Yes, it does. This is crucial in the survivorship phase post-transplant.

Erin Kopp

Every person we encounter has a different level of resilience, and their tolerance of what they can deal with in their daily life in terms of disability differs as well. So, if we had a QOL measure that went beyond just what we do in studies and includes that in our day-to-day patient interaction, we can help patients become more successful overall in managing, surviving, and thriving through this disease. With that in mind, when I'm initially dealing with a patient, I make that part of my assessment and ask them, “What is your quality of life defined by?” I try to work any intervention that I do around that and include that in my evaluation of how successful my interventions were.

I believe that when you ask patients that, it helps them understand that their perception is important, and it empowers them, which helps them be engaged and adherent with therapy regimens. I’m talking about the adult population, which is where I work. Adults generally want to be engaged, not told, "This is what you have to do." It's, "I'm going to do this because..." And they understand and have some skin in the game.

Katie Sellers

Absolutely. I appreciate you sharing your systematic approach to this conversation and highlighting the patient’s priorities during your visits. Patients with clinically significant GVHD with higher global and organ-specific severity grades have a lower quality of life. These patients will have high scores using the modified Lee Symptom Scale. Patients who don't have GVHD or have mild GVHD are still likely impaired physically, but are likely going to have lower scoring, translating into less burden. Understandably, we see patients with more significant symptoms in the lungs, GI tract, joints, and fascia have more clinically meaningful deterioration of their physical quality of life. For example, patients requiring oxygen supplementation for progressive dyspnea or weight loss and malnutrition resulting in supplementation nutrition needs are going to have obvious barriers in their day-to-day functioning. Sometimes chronic GVHD isn’t that obvious though. These symptom scales help assess the signs and symptoms we may not identify or catch as readily, giving us better insight into the patient experience.

It's important to call out that quality of life isn’t limited to the physical and emotional manifestations but also how this impacts their work and their caregivers. There's been a lot of research that has come out about that with The Living with Chronic GVHD Survey.³ Of the patients who were employed full- or part-time at the time of their transplant, 61% of them had to take disability leave, which is no surprise when you think about the transplant process as a whole. 

After transplant, 58% had to work reduced hours and 27.5% had to take a less demanding job. A decent percentage, 33.8%, had to leave a job, and 71% of patients reported lost income due to chronic GVHD. This highlights the significance of chronic GVHD on a patient's mental, emotional, and financial quality of life. In the Chronic GVHD Consortium Response Measures Validation Study,⁴ 66% reported a financial burden. In turn, patients with a financial burden had greater depression and/or anxiety and difficulty sleeping.

Erin Kopp

Right. We always look at morbidity and mortality in terms of a direct causation. If you have exacerbated symptoms of a GI issue with chronic GVHD that leads to malnutrition and electrolyte derangements, we can see the direct correlation between you having these symptoms and then having this sequela.

However, we don't necessarily think about it as an overall functional assessment of our patients, which is interesting because if you go way back, even back in 1997, the FACT–BMT [Functional Assessment of Cancer Therapy–Bone Marrow Transplantation] scale⁵ existed, but I didn't see it used very often. That was unfortunate because it looked at the functional assessment of cancer therapy and BMT and how patients are able to survive and function compared with baseline.

So, we know that providers in this field have been concerned with this for many decades, but what becomes so challenging is how do we evaluate something that can be so nebulous. I really appreciate the fact that you brought up the patient survey because where better to go than to the patient themselves?

When we look at quality of life, that may even be a misnomer because what we're talking about is how this patient is functioning, coping physically, mentally, financially, and spiritually after they've had this disorder or while they're continuing to deal with this chronic illness. I mean, I'm sure you face that too, Katie.

Katie Sellers

Yes, I do.

Erin Kopp

Something we may consider relatively benign, depending on how severe it is, is cutaneous chronic GVHD. However, there are findings that correlate sclerotic and combination sclerotic epidermal chronic graft-vs.-host disease with the lowest quality of life using the Lee Symptom Scale, and then comparing it to data within the Chronic GVHD Consortium data,⁶ finding that they actually had higher scores as well. The higher scores they had on the Lee Symptom Scale, meaning higher burden, the worse the outcomes were, including non-relapse mortality.

We think about that when we talk about lungs and when we talk about cardiac implications. But having something like unmanaged skin chronic GVHD has not only a psychosocial component and ramifications, but we also see it physically.

Every time I talk to somebody who's worked with these patients, I walk away feeling like, "Oh my goodness, there's so much more to think about. And there are so many other frontiers to conquer to help these patients have the type of life I think we all strive for when we're asking somebody to go through a transplant process."

Katie Sellers

I completely agree. The paradigm in the management of GVHD is shifting, all to the benefit of the patient and clinician. For many years, we were at a standstill with treatment options. We are seeing exponential developments in clinical trials resulting in increasing treatment options, therefore offering innovative options with improved outcomes for patients.

This in turn has resulted in enhanced patient education and resources, often right at their fingertips. Chronic graft-vs.-host disease is not a fleeting diagnosis and requires lifelong monitoring, treatment, and support of the patient.

Regarding symptom scales and quality-of-life studies, if you perform a quick internet search, you’ll find thousands of results. This is thanks to the fantastic efforts put into patient education, focus on patient-reported outcomes, and shifting the standard of care. Ultimately, what we all want is the best outcome in the best long-term care for our patients.

Erin Kopp

The number one pearl I would give a new provider or a provider who's new to this space, or even somebody who's been doing this for a while, is to put a patient's quality of life at the front of their mind when they start any engagement, any appointment, any conversation with the patient and remind yourself and them that this is a marathon. Let them know that the key to managing through chronicity is to have that as your focus, as your true north, right.

And that really helps drive me as the provider to stay up to date on what the most recent and current treatments are, and then help the patient that I'm working with to understand and try to adhere to that therapy and pivot when we need to to ensure that they get what they need.

Katie, do you have any parting words for somebody listening, any pearls?

Katie Sellers

I agree with you, Erin. At the end of the day, prioritizing the patient's quality of life, while addressing all of their ongoing concerns, is the best way to operate as a clinician managing chronic GVHD. Meeting the patient where they are, understanding how that's impacting their physical, emotional, mental, financial, and spiritual health allows us to better understand the whole of the patient. This translates into how we can best intervene and support the patient’s needs. The standardization and utilization of quality-of-life measures through the use of symptom scales, like Dr. Stephanie Lee’s, has made this attainable.

Erin Kopp

Yes, they are. Thanks so much for talking with me about this Katie.

Katie Sellers

Thank you, Erin. I appreciate your insight and expertise.