Objective: Evaluate disease knowledge in patients with Parkinson’s disease in an Advance Care Planning (ACP) clinic.

Background: Poor disease knowledge has been associated with misconceptions in PD and identified as an important gap in patient-centered care.

Method: This is a cross-sectional study of PD patients who attended the ACP clinic in the past year.
Disease knowledge was divided into 7 topics (diagnosis, prognosis, treatment, clinical services, advanced therapies, advanced directives and support groups).
Each item was assessed using a patient-rated, 5-item Likert scale (0-no knowledge; 1-very little knowledge; 2-average knowledge; 3-good knowledge;4-very good knowledge) about their knowledge.
Demographic characteristics were recorded and questionnaires were completed for disease stage (HY), progression (UPDRS), symptom burden (ESAS), quality of life (PDQ-39), cognitive changes (MOCA), and depression (GDS).

Results: A total of 53 patients were seen at the ACP clinic. The mean age was 74.4 ± 9.2 years, 34% females, and a mean H&Y of 2.3 ± 0.6, with disease duration 6.3 ± 5.5 years.
IPD was the most frequent diagnosis in 48/53 (90.6%) of patients. Depression based on GDS (>4) was seen on 58.8% of these patients while cognitive changes were detected by MOCA (<26) in 16/28 (57.1%) patients.
Patients reported their knowledge below average for diagnosis (20.8%), prognosis (28.3%), treatment (34%), clinical services (67.9%), advanced therapies (75.5%), advanced directives (69.8%), and support groups (64.2%).

Conclusion: Our study described the disease knowledge of PD patients evaluated in an advance care planning (ACP) clinic. While our patients had an average or above knowledge of their diagnosis, prognosis, and treatment, the knowledge regarding clinical services, advanced therapies, advanced directives, and support group were very low.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/advance-care-planning-and-parkinsons-disease-patient-knowledge-assessment/