Objective: To analyze verbatim patient-reported problems compared with ordinal measures referable to Postural Instability (PI) symptoms in the Fox Insight (FI) observational study.

Background: FI is an online, longitudinal research study that includes the Parkinson’s disease Patient Report of Problems (PD-PROP) capturing keyboard-entered verbatim text of their (1) most bothersome problems related to PD (up to five prioritized problems) and (2) functional consequences of each problem.

Method: Verbatim PD-PROP keyboard entries were analyzed using natural language processing, n-gram extraction, expert clinical curation, and machine learning. Among participants within 10 years of PD diagnosis, baseline PD-PROP data (extracted 7/5/19) were mapped to corresponding FI categorical questions (“Have you experienced falling in the last month?”, MDS-UPDRS 2.12 “Over the past week, have you usually had problems with balance and walking?, and MDS-UPDRS 2.13 “Over the past week, on your usual day when walking, do you suddenly stop or freeze as if your feet are stuck to the floor?”).

Results: Of 17,950 PD research participants (0-10 [3.4 ± 2.9] years since diagnosis, 65.7 ± 9.8 years old, 9826 men [54.7%], and 8,124 women [45.3%], 97% White) who completed the baseline PD-PROP, Postural Instability (PI) symptoms were  reported by 10,118 (56.4%) subjects, including sub-symptoms referable to Gait n=7,049, Balance n=4,305, Falling n=2,855, Freezing n=823, Posture n=607). The verbatim priorities for PI showed high association with yes-no falling in the past month (OR 3.02, 95% CI 2.76, 3.31). Sub-symptoms were internally consistent and correlated significantly with the categorical answers (Spearman and 95% CI for the top two sub-symptoms): (1) Falling yes-no: Falling 0.18 (0.15, 0.22), Balance 0.13 (0.10, 0.16), and (2) MDS-UPDRS 2.12: Balance 0.23 (0.20, 0.26), Falling 0.21 (0.17, 0.24), and (3) MDS-UPDRS 2.13: Freezing 0.23 (0.17, 0.30), Gait 0.17 (0.15, 0.19).

Conclusion: Verbatim PROP reporting of PI symptoms and sub-symptoms paralleled categorical responses and provided richer and more granular detail about the problems that patients experience compared with ordinal data and can be expanded to include other symptom domains. The PD-PROP is a feasible and informative research tool that has broad applications to clinical trial enrichment and the development of fit-for-purpose clinical outcome assessment.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/comparison-of-categorical-and-verbatim-reported-postural-instability-symptoms-among-fox-insight-parkinson-research-participants/