Objective: To determine the relationship between the patient and caregiver experience of the psychotic features of Parkinson’s disease psychosis (PDP) reported to call center healthcare professionals (HCPs).

Background: While it is well known that mild psychotic symptoms in Parkinson’s disease (PD) are frequently underreported, the relationship between the patient experience and what they ultimately report, versus what the caregiver experiences and then reports has not been previously reported.

Methods: Between 1 Jan 2013 and 11 Nov 2017, the Parkinson’s Foundation (PF) helpline received 1,068 calls from patients with PD and caregivers in which aspects of PDP were discussed. The PF helpline is a free, national patient support call center staffed by experienced HCPs including nurses and social workers with support from PF Center of Excellence neurologists. An analysis was conducted based on their detailed notes. A structured survey on their experiences and attitudes about PDP was sent by email to 517 callers and 1,662 individuals who participated in a webinar.

Results: 1,068 helpline callers and survey results were analyzed. Of the callers, 616 (58%) mentioned hallucinations while only 73 (6.8%) mentioned delusions (ratio: 8.4). Of the 418 (19.2%) of survey respondents, 199 (48%) were patients and 219 (52%) were caregivers. In the survey, helpline callers were more likely to have experienced PDP than webinar participants (71% vs 63%). Among those reporting psychosis, 88% reported hallucinations and 47% reported delusions. There was no significant difference between patient and caregiver rates of reporting hallucinations but caregivers were significantly more likely to report delusions than patients (reporting rates of 61% versus 22%, respectively; p<0.001). The ratio of reports of hallucinations to delusions were 1.88 overall, and for patients and caregivers, 3.76 and 1.50, respectively. Caregivers who reported delusions were more likely to identify themselves as “worried” or “very worried” about PDP than those who only reported hallucinations (79% versus 48%, respectively; p=0.0001).

Conclusions: PDP is a troubling feature of advanced PD and unstructured discussion or querying only patients, often fails to uncover delusions, the most worrisome feature for patients and families. This survey provides new optics on patient and caregiver journey as it pertains to diagnosis and treatment strategy.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/evaluation-of-parkinsons-disease-psychosis-requires-structured-questioning-of-patients-and-caregivers/