As Parkinson’s disease diagnoses continue to rise in the U.S., a new report spearheaded by UCLA neurologist Dr. Indu Subramanian and her collaborators is changing how this life-altering news is delivered to patients.
Published in the journal Parkinsonism and Related Disorders, the report emphasizes the importance of a sensitive and informed approach, drawing on patient experiences to guide medical providers in delivering the diagnosis.
Dr. Subramanian highlights a critical issue in current Parkinson’s disease diagnosis practices: the delivery of the diagnosis often lacks the necessary expertise and sensitivity, especially when handled by primary care physicians or community neurologists.
The report aims to address this gap by providing a comprehensive guidebook for medical professionals, from rural community doctors to experienced specialists.
Approximately 90,000 people are diagnosed with Parkinson’s disease annually in the U.S., a number that has doubled since 2012.
Currently, about 1 million Americans live with Parkinson’s, with projections estimating a rise to 1.2 million by 2030. Despite its increasing prevalence, there is still no known cure for Parkinson’s disease.
The manner in which a diagnosis is communicated significantly impacts a patient’s psychological well-being.
Subramanian notes that many patients experience demoralization and hopelessness following their diagnosis, with a heightened risk of suicide within the first 180 days. This underscores the need for a more empathetic and empowering approach to delivering the news.
Dr. Subramanian advocates for replacing the traditional “I’m sorry, you have Parkinson’s” approach with a message of hope and agency, emphasizing the treatability of the disorder and the support available to patients.
The report suggests that doctors should inform patients about the steps they can take to live better, introduce them to supportive resources, and affirm their role as part of the patient’s care team.
The report also addresses issues of disparity in Parkinson’s disease diagnoses, noting that women, young people, and minority populations often experience delayed or missed diagnoses compared to older white men. This highlights the need for greater awareness and inclusivity in diagnostic practices.
Key recommendations from the report include delivering the diagnosis in person using clear and direct language, avoiding euphemisms, and providing comprehensive guidance on self-care, treatment options, coping strategies, and lifestyle choices from the outset.
The report also suggests spreading the news over two appointments and encourages patients to bring a family member or trusted friend for support.
This initiative represents a significant step towards improving the diagnosis experience for Parkinson’s patients, fostering a dialogue among healthcare professionals worldwide and advocating for change that centers on the needs and perspectives of those affected by the disease.
If you care about Parkinson’s disease, please read studies that Vitamin B may slow down cognitive decline, and Mediterranean diet could help lower the risk of Parkinson’s.
For more information about brain health, please see recent studies that blueberry supplements may prevent cognitive decline, and results showing Plant-based diets could protect cognitive health from air pollution.
The research findings can be found in Parkinsonism & Related Disorders.
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