Objective: To validate the Rush Parkinson’s Disease Patient-Centered Outcomes Questionnaire (RUSH-PCO-Q).

Background: The RUSH-PCO-Q aims to address the lack of patient-centered outcomes in the field of interventional therapies (i.e. deep brain stimulation, carbidopa/levodopa enteral suspension) for Parkinson’s disease (PD). This survey consists of three parts including patient perception of PD symptoms (Part 1), knowledge of the intervention (Part 2), and expectations of and satisfaction with treatment effect (Part 3). Providers at our institution currently use the RUSH-PCO-Q clinically, but formal validation has not been completed, limiting more generalized use [1].

Method: The RUSH-PCO-Q was formulated by clinicians and presented to patients for cognitive pre-testing in order to determine patients’ understanding of and comfort and ease with completing the scale.  Primary English-speaking PD patients without significant cognitive impairment who in the past 3 months have undergone an intervention or will undergo one in the next 3 months were selected by chart review to participate. During cognitive pre-testing, participants were observed and prompted to reflect on the questions asked and the survey format. Comments were tabulated. A Delphi panel consisting of 4 experts in PD and interventional therapies was recruited to select questions that are appropriate, accurate, and interpretable and to modify items based on majority opinion.

Results: 10 participants (n=5 before and n=5 after intervention) were recruited and provided feedback. Overall, participants reported that the scale adequately assessed impact of symptoms, knowledge of the interventional therapy, and expectations. There were minor suggestions for improving instructions and wording in Parts 1 and 3. Part 2 received the most critique because of difficulties in understanding sentence structure and terminology. In April 2022, the Delphi Panel will convene, and the questionnaire will be further modified based on feedback and recommendations, after which a second round of cognitive pre-testing may be completed.

Conclusion: The outcomes of interventional therapies in movement disorders patients are frequently determined by a clinician’s assessment. In contrast, the RUSH-PCO-Q, once validated, may provide insight into patient perspectives on symptom burden, pre-operative expectations, and post-operative outcomes.

References: 1. Karl, J. A., Ouyang, B., Colletta, K., & Verhagen Metman, L. (2018). Long-Term Satisfaction and Patient-Centered Outcomes of Deep Brain Stimulation in Parkinson’s Disease. Brain Sciences, 8(4), 60. https://doi.org/10.3390/brainsci8040060

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MDS Abstracts - https://www.mdsabstracts.org/abstract/a-patient-centered-outcomes-survey-in-parkinsons-disease-results-of-cognitive-pre-testing/