Developing Patient Perspectives that meet clinician needs
Dr. Chou took responsibility for finding the patient contributor by reaching out to the Parkinson’s Foundation, a national advocacy organization with which he’s worked on a number of community programs. One of his contacts at the organization identified a patient who was willing to share their experience. Dr. Chou did not have direct interactions with the patient.
Dr. Chou has been drafting and editing UpToDate topics for the neurology specialty since 2008, including topics on clinical manifestations in Parkinson’s disease and differential diagnosis of Parkinson’s disease. He was very familiar with the editorial process and the rigorous professional review content underwent before it could be published in UpToDate.
When he was given the task of editing a Patient Perspective article written by a non-clinician author, he initially approached it as he would editing any other piece of professional content. But he soon realized it would require a slightly different perspective on his part as well.
“I think many aspects are the same because you’re just trying to present a narrative that is easily understandable, that flows well. But there is some difference in that this is someone who’s a layperson writing, and so you have to take back the tendency to use more medical jargon,” he says. “I’m not the one experiencing it. This is a patient telling us what they’re feeling, and the way they’re expressing it, I think, is very important. So, I had to resist my impulse to change it into a more of a clinical narrative as opposed to personal narrative.”
As the editor, Dr. Chou looked to maintain the patient’s personal narrative while pinpointing the elements a clinician would require to be “aware that Parkinson’s disease was in the differential” and emphasize them.
“There were a lot of things that we brought forward to help support [concepts] which are not what the patient necessarily feels are the most important,” Dr. Chou explains. “So, it was more about organizing it so that we could say, ‘OK, these are [the patient’s] important things, and you should definitely talk about that, but you should add all of these other things that are necessary to the clinician that, if they’re thinking about Parkinson’s disease, they’re going to ask about, even though [patients] probably weren’t thinking about them at that time.’”
The primary advice he offered as an editor had to do with the timing of the descriptions of symptoms. While the patient had included many of his Parkinson’s symptoms and how they had affected his quality of life, the chronology of when those symptoms occurred was missing. This was information that a clinician needed to know, but that a patient might not realize was relevant.
“The way clinicians think, they want to know what comes first, what comes after,” Dr. Chou explains. “Such a timeline helps to put the narrative into a format that clinicians can process more easily. But at the same time, we kept the emphasis on how [the patient] was experiencing and responding to those particular symptoms in real time.”
Putting Patient Perspectives into practice
The Patient Perspectives project intrigued Dr. Chou as both a practicing clinician and an educator.
“I really thought it was a very different and interesting way to present some of the information that would be useful to clinicians,” he says. “Since it was a patient who was writing it, it was his perspective – in my case, [the patient] was a him – on getting the diagnosis and of navigating the whole healthcare system and then what the diagnosis meant to him, how the interactions with the healthcare system impacted him. I think it’s important for neurologists to see that.”
Empathy for patients
Specialists engaged in chronic, long-term care of patients often develop lasting relationships, Dr. Chou says. In those cases, particularly, taking time to understand the patient’s point of view is essential. “If you don’t approach it from that perspective, they’re going to look for someone else, or they may not want to get treated by you,” he notes.
Medical trainees, he believes, can use patient stories as an important touchstone during their often-hectic years of internships and residency. “When we go into training, you’re taught to look at a problem from pretty much only one way: The diagnostic point of view, the treatment point of view. And I think sometimes that human element is lost,” Dr. Chou says. “Patients become more of a disease or a disorder than a person. Emphasizing that there’s someone living with this, that there’s someone experiencing this, I think can only make us better clinicians and better doctors.”
‘Translating’ symptoms into diagnosis
Dr. Chou also sees potential for Patient Perspectives articles to help clinicians get “a better feel for the symptoms” patients are experiencing and how those relate to a differential diagnosis.
“When I teach medical students and residents, and I say, ‘What is Parkinson’s disease?’ They say, ‘It’s tremor, bradykinesia, rigidity’ and all of these technical terms that we use for it,” he explains. However, he notes that patients are not going to use any of those same terms. Understanding how they will perceive the manifestation of the disease is a valuable skill to develop.
In the UpToDate Parkinson’s Patient Perspective narrative, for example, the patient describes a symptom onset by recalling playing basketball and being unable to complete shots because it was too difficult to fully extend his arms and shoot the ball.
“That is actually probably a result of bradykinesia (slowness) and rigidity (stiffness) in his limbs from Parkinson’s,” Dr. Chou explains. “But they are not always going to come in and say, ‘I have slowness. I have stiffness.’ They’re going to tell you these stories about the kinds of problems they have. And you have to take that and translate it into your medical term. Is that [basketball problem] really slowness, which is bradykinesia?”
A patient’s firsthand account demonstrating that Parkinson’s disease doesn’t always “present with these textbook terms; they present with all sorts of different types of activities that they can no longer do,” can be a useful tool for trainees, Dr. Chou explains. “Over time you learn what they really mean.”
A patient-centric approach
One lesson that resonated with Dr. Chou from his work on the article was that the patient author recounted receiving his Parkinson’s diagnosis in one blunt sentence followed by terse medication instructions. “No explanation, no kind of support afterwards, nothing,” he says. “How you give a patient a diagnosis, how you say it to them, really makes a difference.”
The patient author discusses being in denial about his diagnosis for a short period of time after initially receiving it and questioning the expertise of this doctor. That lack of confidence and trust made an impression on Dr. Chou. “I think when you’re giving a diagnosis that could be a lifelong chronic disease, we can learn from these experiences and be a little more sensitive. Just don’t give the diagnosis and leave it at that. At least ask some follow-up questions: What are you feeling right now? What are you thinking? How can I help answer any questions that you may have?”
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