Objective: Describe the relative frequency of bothersome cognitive symptoms reported verbatim by people with PD in the Fox Insight online study.

Background: Cognitive decline is experienced by most people with PD [1]; yet, the reported experience and functional impact of cognitive symptoms as expressed directly through patients’ words is underexplored [2].

Method: Surveying >25,000 PD participants in Fox Insight, we collected Parkinson Disease Patient Report of Problems (PD-PROP) consisting of open-ended questions that ask PD patients to report by keyboard entry the problems that bother them and how these problems affect their functioning. Human curation, natural language processing and machine learning categorized responses into 8 distinct cognitive symptoms: memory, attention, language/word finding, visuospatial abilities, cognitive slowing, mental alertness and executive ability and cognitive impairment not otherwise specified [3]. Multivariate logistic regression examined associations between cognitive symptoms and age, sex, years since diagnosis (YSD), education and MDS-UPDRS II. Conceptual constructs of fronto-striatal cortical deficits (executive abilities and concentration) and posterior cortical deficits (visuospatial, memory and language) were explored [4, 5].

Results: Among 25,192 participants, 8001 (32%) reported a cognitive symptom at baseline; median age at first report was 67, men 55% and median YSD was 3. The three most frequent symptoms were memory (13%), language/word finding (12%) and concentration/attention (9%). Odds ratios of reporting any bothersome cognitive symptom was higher with increasing MDS-UPDRS II score (OR 1.4/10 point increment), higher education (OR 1.2), and YSD of 1 vs 0 (OR 1.2). Of the 7172 PD patients in our dataset who reported at least one cognitive deficit, posterior cortical related symptoms comprised 60.3% (n=4325), frontostriatal related symptoms comprised 25.5% (n=1827) and 14.2% (n=1020) reported both. Odds of posterior cortical deficits increased with age and MDS-UPDRS part II score.

Conclusion: Nearly one-third of research participants, even early in their PD, report cognitive symptoms as functionally bothersome. Online verbatim reporting analyzed by human curation, natural language processing and machine learning to classify symptoms is feasible at scale and informative in recognizing cognitive symptoms applicable to PD clinical care and RCTs.

References: 1. Armstrong MJ, Okun MS. Diagnosis and Treatment of Parkinson Disease: A Review. JAMA. 2020 Feb 11;323(6):548-560. doi: 10.1001/jama.2019.22360. PMID: 32044947.

2. Boersma I, Jones J, Carter J, Bekelman D, Miyasaki J, Kutner J, Kluger B. Parkinson disease patients’ perspectives on palliative care needs: What are they telling us? Neurol Clin Pract. 2016 Jun;6(3):209-219. doi: 10.1212/CPJ.0000000000000233. PMID: 27347438; PMCID: PMC4909525.

3. Marras et al., What Patients Say: Curation of Parkinson’s Disease Patient Report of Problems. JPD in submission.

4. Litvan I, Goldman JG, Tröster AI, Schmand BA, Weintraub D, Petersen RC, Mollenhauer B, Adler CH, Marder K, Williams-Gray CH, Aarsland D, Kulisevsky J, Rodriguez-Oroz MC, Burn DJ, Barker RA, Emre M. Diagnostic criteria for mild cognitive impairment in Parkinson’s disease: Movement Disorder Society Task Force guidelines. Mov Disord. 2012 Mar;27(3):349-56. doi: 10.1002/mds.24893. Epub 2012 Jan 24. PMID: 22275317; PMCID: PMC3641655.

5. Martínez-Horta S, Kulisevsky J. Is all cognitive impairment in Parkinson’s disease “mild cognitive impairment”? J Neural Transm (Vienna). 2011 Aug;118(8):1185-90. doi: 10.1007/s00702-011-0675-9. Epub 2011 Jun 22. PMID: 21695418.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/pd-prop-reporting-in-participants-own-words-shows-high-burden-of-cognitive-symptoms-in-early-parkinson-disease-pd/