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Semin Neurol 2023; 43(01): 178-184
DOI: 10.1055/s-0043-1763509
Review Article

Delivering a Diagnosis of Parkinson's Disease and Parkinsonism with Wisdom and Sensitivity

Marie-Hélène Saint-Hilaire
1   Department of Neurology, Boston University Chobanian and Avedisian School of Medicine, Boston, Massachusetts
,
Cathi-Ann Thomas
1   Department of Neurology, Boston University Chobanian and Avedisian School of Medicine, Boston, Massachusetts
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Abstract

Parkinson's disease (PD) is a chronic, progressive, complex movement disorder. In addition to the motor manifestations, changes in mood and cognition frequently occur. It is understandable that receiving this diagnosis can be difficult for patients and their significant others. For the clinician, delivering a PD diagnosis can be challenging and requires a comprehensive patient assessment followed by a thoughtful treatment plan. How this diagnosis is conveyed can have a long-term impact on patient outcomes such as treatment adherence, participation in decision making, understanding of PD, and satisfaction with care. Because a PD diagnosis is often complicated by uncertainty about the diagnosis itself as well as future prognosis, a sensitive patient-centered approach to care, balanced with realistic expectations, is recommended. Full disclosure, honesty, and empathy on the part of the entire healthcare team are required. This includes relevant information tailored to the patient's unique needs at the time of diagnosis as well as referrals to appropriate rehabilitation and support services. Consistent, timely follow-up of all interventions is essential. It is essential that a diagnosis of PD is properly delivered to optimize understanding of PD, treatment adherence, participation in decision making, and satisfaction with care. In this article, we provide guidance on delivery of this diagnosis based on a growing body of evidence and our >35-year collective clinical experience and work developing and utilizing pertinent, creative educational tools and comprehensive, sensitive support programs for newly diagnosed patients and their significant others. Although most of the evidence we present pertains to PD, our experience suggests it could also apply to other forms of Parkinsonism and other chronic or progressive movement disorders.

Keywords

Parkinsonism - conveying diagnosis - health literacy - patient education


Publication History

Article published online:
28 February 2023

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