Objective: To understand the experience and management of Parkinson’s disease psychosis (PDP).

Background: PDP is a troubling non-motor symptom of Parkinson’s disease. Clinical approaches to PDP are well established but the patient (PT) experience is not well understood.

Methods: A survey was sent to PT and caregivers (CG) indicating interest in PDP through (a) calls the Parkinson’s Foundation (PF) helpline or (b) registering for a webinar on PDP. The survey queried about PDP and the diagnostic and treatment experience.

Results: Of 1,230 callers to the helpline, 517 provided e-mail addresses, and with 1,662 webinar registrants 2,179 e-mail addresses were obtained. A single e-mail was sent to each of these individuals and 418 (19.2%) completed the survey. Of the respondents, 199 (47.6%) identified as PT and the remainder as CG. Of these, 266 (64%; 95 PT, 171 CG) reported PT having experienced symptoms of PDP, with 234 (56%; 80 PT, 154 CG) reporting hallucinations, 146 (35%; 49 PT, 97 CG) illusions, and 125 (30%; 21 PT, 104 CG) delusions. CG were significantly more likely to report delusions than PT (47% vs 11%, respectively, p < 0.0001). Differences in reporting rates were not significant for hallucinations or illusions. Of 244 who reported on contact with a healthcare professional (HCP), 198 (81%) had discussed their PDP symptoms with an HCP, however 29 (12%) waited several visits before discussing it. Of those engaging an HCP, 191 (96%) had attempted one or more strategies to manage their PDP. These included: 84 (44%) coping strategies, with 23 (12%) reporting improvement; 133 (70%) adjusted their PD medications, with 79 (41%) reporting improvement; and 115 (60%) started an antipsychotic (AP), with 58 (30%) reporting improvement. Two or more strategies were tried in 114 (60%) of individuals, and 93 (49%) both adjusted existing medications and added an AP. Of those adjusting medications and starting an AP, 64 (69%) reported improvement. Overall, 118 (62%) indicated that at least one of the three strategies resulted in improvement, whereas zero of the 46 respondents who experienced PDP symptoms but did not report them to an HCP said that their symptoms improved.

Conclusions: In the real-world setting, management of PDP apparently entails multiple treatment strategies to address complex and progressive symptoms, and improvement is dependent on reporting of symptoms to the neurologist by both patient and caregiver and appropriate treatment, both of which appear to be unnecessarily delayed.

« Back to 2018 International Congress

MDS Abstracts - https://www.mdsabstracts.org/abstract/patient-experience-of-parkinsons-disease-psychosis-management/