And the Survey Says…We May Not Know Everything That Our Patients Need

Tajuana Bradley

Lindsey, I thought we could talk a little about diversity and inclusion. There can be many barriers to care, such as social determinants of health and other factors that may impact someone's understanding of their disease, and the treatment of their disease. Can you share a little bit about what your experience has been in terms of barriers and ways that we can have more diversity and inclusion?

Lindsey Lyle

Absolutely. It's interesting because our perspective is often informed by our own experience caring for patients with myelofibrosis. Access to quality care can be very challenging, and access to treatments can be another challenge. There was a quality improvement initiative survey assessing barriers to patient-centered MPN care in two large US hospital systems that was published a couple of years ago.¹ The health-care providers and the patients were both given surveys. The first question asked was what are the most pressing challenges patients face in their care. I found the results very eye-opening.

From the health-care provider perspective, symptoms and treatment preferences as well as meeting treatment goals were the things that health-care providers thought was the most challenging for their patients. But the patients viewed different challenges as most pressing. The results were broken down between Black patients and non-Black patients. Black patients felt that lack of reliable transportation or distance to the care center was the most pressing challenge. The non-Black patients felt that difficulty managing symptoms was the most pressing challenge.

It’s so important for advanced practitioners to understand and recognize the differences or discrepancies between health-care provider perceptions of barriers to care versus patients' perceived barriers to care. An understanding of this will help better inform the conversations they have with their patients, or they’ll at least have a better understanding of where the patient may be coming from.

So, if you were to answer this question of the most pressing challenge in MPN care, using your own experience, and then think about some of your patients and their barriers, does this survey shed any light? Do you find this consistent with your practice, Tajuana?

Tajuana Bradley

I would say so. I think transportation has always been a barrier, but it's even more of an issue now as patients are getting older. A lot of our patients are not connected the way we think they are. They may not have any reliable help or transportation. So I agree with you about that. Regarding symptoms, I had a patient that reported experiencing symptoms on every visit. She felt that previous providers were dismissive of her symptoms. So, I do think that in certain populations, outside of transportation, symptom burden can be pretty intensive. I read a study where they talked to patients and found that 90% of the patients had symptoms at diagnosis. I think sometimes that can be overlooked because again, we get caught up with the numbers. So I would definitely agree that I'm seeing some of the same barriers and challenges in my current practice.

Lindsey Lyle

Looking at the next part of the survey, which evaluated the top factors for treatment decision-making, health-care providers thought that the most important things were quality of life and treatment effectiveness, but for patients it was the cost of treatment and how the treatment was taken. This makes sense that from a scientific angle, we're thinking about the importance of how effective a treatment is for our patient’s disease. Are we reaching our goals? But wow, we really need to consider that some of our patients’ top priorities are if they can afford the treatment and how they have to take it. Meaning, I would also assume, what are the side effects or what's the burden going to look like for the patient.

Tajuana Bradley

Yes, I would agree. The price of medications can be pretty costly, and that’s a major concern for many of our patients across the board. Just the cost of things, the side effects, how often do I have to take it...I think sometimes when patients hear that it's an oral option, taking it more than once a day can be an issue for them. Or if they have to come in for treatments, you have to add in the appointments for labs, particularly if they're becoming transfusion dependent. Those things can add layers of complexity to their treatment plan.

Lindsey Lyle

Without a doubt. The survey was quite extensive, but there’s one final question that I want to highlight from it. It asked what the MPN care team could improve upon the most. This is pretty important for us to understand what our patients actually need from us versus what we think they need from us. The health-care providers thought that the teams were probably underutilizing shared decision-making. So, not having enough time to engage in shared decision-making and low health literacy were cited as the biggest barriers from providers. However, our patients felt that we could improve more in education about MPNs, such as the underlying disease and treatment options, and improve in exhibiting empathy throughout the emotional journey. We talk a lot about symptoms, focusing often on the physical symptoms that are included in the MPN 10 symptom assessment form,^2,3 but we know patients with MPNs have a number of emotional symptoms that are tied to their disease, right?

Tajuana Bradley

Absolutely. They're often dealing with other psychosocial issues, depression, anxiety, and poor concentration to name a few. I often find that patients with MF or any cancer worry that they'll be a burden to family members, so that adds a layer of stress. Research has shown that people with cancer who better manage stress and maintain a positive outlook often do better throughout their diagnosis and treatment.⁴ It is easy for patients to get overwhelmed by treatment information and comprehending their disease process, and if we factor in health literacy, that’s another conversation in and of itself.

Lindsey Lyle

So how interesting is it that we're saying, "Oh, maybe they don't have good enough health literacy," but patients from this survey are actually telling us, “Teach us more, but also, have empathy for what we're going through.”

Tajuana Bradley

Yes, I would agree with that. You talk about, particularly from a provider standpoint, not having enough time. But it's important that patients have information and education provided to them to help them understand what's going on, and that we give them time to process it and not rush their visits. We need to give them ways to help get through some of these challenges outside of education. What more can we do to help them with being part of this shared decision-making, help them understand what's happening, and how they process it? They need ways to channel some of this. When you look at breast cancer, there's a lot of awareness around that disease. I think as a community, we can do more to bring awareness about some of our MPNs and even get more support groups going. Patients oftentimes are pretty engaged and want to know more and learn more. Support groups made up of people with similar disease states and symptoms who can help each other navigate this whole journey can really help.

Lindsey Lyle

Absolutely. That’s a great point. It's such a rare disease that while the effort is certainly there, by sheer numbers, there are not as many resources. We have a lot of ground to cover and a lot of ways to improve.

Thanks for chatting with me through these barriers to care. I just found this fascinating, and I hope those eye-opening results will lead to us being able to provide better care to our patients to meet their true needs, not the needs we perceive they have, or at least marry the two.