Not every doctor knows how to deliver a Parkinson’s disease diagnosis, but a new framework is trying to ensure they do.
Access to specialists can be limited, which is why a team led by a neurologist at the University of California, Los Angeles (UCLA) published a guide for neurologists, primary care physicians and other healthcare providers with limited training in Parkinson’s disease.
“I think there is a lot of mythology around the disease … In fact, I think it’s a very treatable disorder,” Indu Subramanian, MD, a UCLA Health movement disorders neurologist and lead author of the report published this month in Parkinsonism & Related Disorders, said in a statement. “Giving hope, giving the patient agency is a critical part of the message.”
Instead of simply announcing a diagnosis, “the doctor should say, ‘You have Parkinson’s and these are the things that you can do to live better and here are some people who can support you and I’m part of your team.’” Subramanian wrote.
How the diagnosis is delivered, and the words used to deliver it, can have a lasting impact on people with the disease. This is vital because they may feel hopeless upon hearing about the diagnosis, which could lead to risky behaviors, Subramanian said. Proper terminology and telling the individual in person that they have the disease are key, he added.
In addition, educating patients about self-care, the latest therapeutic options, coping strategies and necessary lifestyle changes can also make the diagnosis less overwhelming and more empowering. Doctors should be aware of cultural context, stigmas and false beliefs that surround Parkinson’s disease. Additionally, they should see if they can deliver the diagnosis over two visits, with the second appointment including a patient’s relative or friend.
“A lot of patients have especially hung their hat on that ‘Diagnosis Day’ — some refer to it as ‘D Day’ — they remember it very clearly,” Subramanian said. “Meanwhile, I think there is a growing body of people — women, young people with Parkinson’s, minoritized populations — who talk about how sometimes their diagnosis was missed and they didn’t get the care that an older white man would get.”
While clinical guidelines underscore the importance of movement disorders specialists in diagnosing and informing patients of Parkinson’s, access to such specialists is not always possible. Initial diagnoses can be made by a community neurologist or primary care physician, who may lack formal Parkinson’s training.
“Some patients may not even know what to ask at this early stage, so it is imperative for the clinician to guide them through this process and provide information that can help them better understand the disease and the steps that lie ahead,” the authors wrote.
“I think that is pretty exciting to have a team of physicians from around the world explore together how we can do better and are humble enough to learn from and include the people we’re serving,” Subramanian said. “I hope this paper starts to create a dialogue and some much-needed change.”
