What can patients teach clinicians about the diagnostic journey and treatment plans?


While all medical students receive training in patient interactions or “how to care for the patient,” the burdensome demands of residency often shift priorities toward diagnostics, sometimes at the expense of empathic connections with the patient. patient’s point of view. Including patient stories in clinical training and knowledge resources can help strengthen these connections and broaden clinicians’ perspectives.

For many clinicians in daily practice, “we focus on symptoms when getting a history and how they accumulate over time because we can use them to make a diagnosis,” explains Dr. Kelvin Chou, co-chief of the Division of Parkinson’s Disease and Related Movement Disorders at Michigan Medicine and professor of neurology at the University of Michigan. “But I don’t think we often think about how our diagnosis actually affects our patients, how the symptoms themselves affect their quality of life. Concentrating on that is not an important part of our training. But having that kind of patient perspective, I think, can ultimately make us better doctors. If you really understand what the patient is going through, it might change the way you talk to patients, and then you might be able to tailor your recommendations to what they’re going through.

Dr. Chou worked with the editorial team at evidence-based clinical decision support solution UpToDate® to help create his collection of “Patient Insights,” short stories (approximately 2,000 words) that describe the a patient’s experience with a medical condition in their own words.

“I really like the result,” says Dr. Chou of working with a Parkinson’s disease patient to write a story about the disease for clinicians and continuing medical education, now available on UpToDate. “I think it can be useful if everyone knows more.”

Develop patient insights that meet clinician needs

Dr. Chou took responsibility for finding the contributing patient by approaching the Parkinson’s Foundation, a national advocacy organization with which he has worked on a number of community programs. One of his contacts within the organization identified a patient who was willing to share his experience. Dr. Chou had no direct interactions with the patient.

Dr. Chou has been writing and editing UpToDate topics for the specialty of Neurology since 2008, including topics on Clinical Manifestations of Parkinson’s Disease and Differential Diagnosis of Parkinson’s Disease. He was very familiar with the editorial process and rigorous professional review of content before it could be published in UpToDate.

When given the task of editing an article on the patient’s perspective written by a non-clinical writer, he initially approached it as if he were editing any other professional content. But he soon realized that it would also require a slightly different perspective from him.

“I think a lot of aspects are the same because you’re just trying to present an easily understandable, flowing narrative. But there is a difference in the fact that it is a layman writing, and so the tendency to use more medical jargon needs to be countered,” he says. “It’s not me who saw it. He is a patient who tells us what he feels, and the way he expresses it, I think, is very important. So I had to resist my impulse to turn it into a more clinical narrative, as opposed to a personal narrative.

As editor, Dr. Chou sought to maintain the patient’s personal narrative while identifying and highlighting the elements a clinician would need to be “aware that Parkinson’s was in the differential”.

“There were a lot of things that we put forward to help support [concepts] which are not necessarily the most important for the patient,” says Dr. Chou. “So it was more about organizing it to be able to say ‘OK, these are [the patient’s] important things, and you should definitely talk about that, but you should add all these other things that are necessary for the clinician that if he thinks about Parkinson’s disease he’s going to ask questions about, even if [patients] probably weren’t thinking of them at the time.

The main piece of advice he offered as an editor was around the timing of symptom descriptions. Although the patient included many of his symptoms of Parkinson’s disease and how they affected his quality of life, the timeline of the onset of these symptoms was missing. This was information that a clinician needed to know, but a patient might not realize was relevant.

“The way clinicians think, they want to know what comes first, what comes after,” says Dr. Chou. “Such a timeline helps put the narrative into a format that clinicians can more easily process. But at the same time, we continued to focus 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 a clinician practitioner and 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 writing it, it was his point of view – in my case, [the patient] was a him – about getting the diagnosis and navigating the whole healthcare system, then about what the diagnosis meant to him, about the impact of interactions with the healthcare system. I think it’s important for neurologists to see this.

Empathy for patients

Specialists engaged in the long-term chronic care of patients often develop lasting relationships, says Dr. Chou. In these cases in particular, it is essential to take the time to understand the patient’s point of view. “If you don’t approach it from that perspective, they’ll look for someone else, or they may not want to be treated by you,” he notes.

He says medical trainees can use patient stories as an important touchstone during their often turbulent years of internship and residency. “When we go into training, you are taught to look at a problem in pretty much one way: from a diagnostic point of view, from a treatment point of view. And sometimes I think that human element is lost,” says Dr. Chou. “Patients become more of a disease or disorder than a person. Pointing out that there is someone living with it, there is someone living with it, I think that can only make us better clinicians and better doctors.

“Translating” symptoms into diagnosis

Dr. Chou also sees the potential for Patient Perspectives articles to help clinicians “better understand the symptoms” patients are experiencing and how these relate to differential diagnosis.

“When I teach medical students and residents and say, ‘What is Parkinson’s disease?’ They say, ‘It’s tremor, bradykinesia, rigidity’ and all these technical terms that we use for that,” he explains. However, he notes that patients will not use any of these same terms. Understanding how they will perceive the manifestation of disease is a valuable skill to develop.

In the UpToDate Parkinson’s Patient Perspective story, for example, the patient describes the onset of a symptom remembering playing basketball and being unable to complete shots because it was too difficult to fully extend. his arms and shoot the ball.

“It’s actually probably the result of the bradykinesia (sluggishness) and rigidity (stiffness) of his limbs due to Parkinson’s disease,” says Dr. Chou. “But they’re not always going to come in and say, ‘I’m slow. 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 it [basketball problem] really slow, which is bradykinesia?

A patient’s first-hand account demonstrating that Parkinson’s isn’t always “present with those textbook terms; they present all sorts of different activities that they can no longer do,” can be a useful tool for trainees, says Dr. Chou. “Over time you learn what they really mean.”

A patient-centered approach

One lesson that resonated with Dr. Chou from his work on the article was that the patient author recounted being diagnosed with Parkinson’s in one straightforward sentence followed by concise medication instructions. “No explanation, no kind of support afterwards, nothing,” he says. “How you give a patient a diagnosis, how you tell them, really makes a difference.”

The patient author recounts denying his diagnosis for a short period of time after initially receiving it and questioning this doctor’s expertise. This lack of trust and confidence made an impression on Dr. Chou. “I think when you make a diagnosis that could be a lifelong chronic condition, we can learn from those experiences and be a little more sensitive. Just don’t give the diagnosis and leave it at that. Ask at least a few follow-up questions: How are you feeling right now? What are you thinking about? How can I help answer any questions you may have? »

Learn about UpToDate’s editorial process that provides clinicians with the latest evidence-based medicine to support patients and their health journey.


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