Report aims to help doctors in announcing a Parkinson’s diagnosis
Hurtful news often first delivered by those without formal disease training
A growing need for local doctors able to compassionately, as well as accurately, diagnose Parkinson’s disease exists, as the number of people being given a Parkinson’s diagnosis is rising in the U.S. while access to movement disorder specialists — trained in knowing how best to deliver such news — is limited, according to a report led by a neurologist at the University of California, Los Angeles (UCLA).
The paper, “Delivering the Diagnosis of Parkinson’s Disease — Setting the Stage with Hope and Compassion,” was published as a discussion article in the journal Parkinsonism & Related Disorders.
Partly based on patient views and experiences regarding their diagnosis — and also authored by Parkinson’s specialists in the Netherlands, the U.K., and two patients — it is meant to serve as a guide for community neurologists, primary care physicians, and other healthcare providers with limited training in Parkinson’s disease.
‘Giving hope is a critical part of the message’
An estimated 90,000 people each year in the U.S. now are diagnosed with the progressive neurodegenerative disorder — some two times the 2012 estimate of 40,000 to 60,000 annual diagnoses, according to a 2022 study supported by the Parkinson’s Foundation. About 1 million residents have Parkinson’s, a number expected to reach 1.2 million by 2030.
“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 Parkinson’s report, said in a UCLA Health news article. “Giving hope, giving the patient agency is a critical part of the message.”
Instead of simply announcing a diagnosis, Subramanian added, “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.'”
The manner in which diagnoses are delivered, and the words that are used, can have an enduring effect on patients, demoralizing and adding to feelings of hopelessness that can lead to risky behaviors, Subramanian said.
“10 years on, I can still recall how the clouds looked that fatal day. I can describe the sounds of the traffic. The smell in the air … I remember the chilling silence of the waiting room too. Then I remember the look in her [my doctor’s] eyes,” one patient said.
While considerable work has gone into best ways of informing patients of cancer or dementia, guidelines for Parkinson’s are not as well established, Subramanian said.
Some refer to hearing of a Parkinson’s diagnosis as their personal D-Day
“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.”
Report recommendations include delivering diagnoses in person and using proper terminology, avoiding such euphemisms as “honeymoon phase,” for example, when describing early disease stages.
Other recommendations include guiding and educating patients about self-care, the latest therapeutic options, coping strategies, and necessary lifestyle changes. Physicians also should consider delivering the diagnosis over two visits, with the second appointment including a patient’s relative or friend.
“Delivering a diagnosis of Parkinson’s disease (PD) with care and compassions requires both solid medical expertise and emotional sensitivity as it is devastating for many to receive this news,” the report states.
While clinical guidelines underscore the importance of movement disorders specialists in diagnosing and informing patients of Parkinson’s, assess 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.
“I remember the look in her [my doctor’s] eyes … and most of all I remember the exact words she used — ‘You’re exhibiting symptoms of Parkinsonism,'” said the patient sharing strong diagnostic day memories. “So scripted. So rehearsed … Like it had been taught from a handbook in year 1 of [medical] school.”
Sensitivity in informing a person of a Parkinson’s diagnoses, including awareness of cultural context, is key to easing patient anxiety at the news, stigmas and false beliefs about the disorder they may hold, and possible challenges in accepting the diagnosis, according to the report.
“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 report states.
“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.”