Social Listening – Revealing Parkinson’s Disease over Day and Night

Abstract Background: Nocturnal symptoms in Parkinson’s disease and their related burdens on patients are often treated after management of daytime manifestations. In order to better understand the unmet needs of nocturnal symptoms management, we sought to analyze the characteristics of nocturnal symptoms and their associated burden from patients’ perspectives in 2016 to 2018 and explore whether there were any changes in participants' needs over time across 3 years. Overall symptoms (occurring at day or night) were collected to contrast and compare whether the unmet healthcare needs related to nocturnal symptoms and to overall symptoms are different.Methods: We used a contemporary Social Listening big-data technique to analyze large amounts of Parkinson’s disease symptoms in patient-doctor and patient-patient dialogues available from social media platforms in 2016 to 2018 in China. These symptoms were classified as either overall symptoms or nocturnal symptoms. We used share of voice (SOV) of symptoms as a proportion of total dialogues per year to reflect the characteristics of symptoms from patients’ perspectives. Negative sentiment score of symptoms was analyzed to find out their related burden on patients. Results: We found that SOV for overall motor symptoms was 79% and had not increased between 2016 and 2018 (79%, p = 0.5), but SOV for non-motor symptoms (69% in 2018) had grown by 7% in 2018 (p < 0.01). SOV for motor complications was 9%, and had increased by 6% (p < 0.01) by 2018. The SOV of motor symptoms was significantly larger than non-motor symptoms and motor complications (p < 0.01) in each year. The SOV of non-motor symptoms was larger than that of motor complication (p < 0.01). For nocturnal symptoms, 45% of the analyzed PD population reported nocturnal symptoms in 2018, growing by 6% from 2016 (p < 0.01). SOV for nocturnal-occurring motor symptoms was higher than most non-motor symptoms (except insomnia). However, non-motor symptoms had the higher increases in SOV. Non-motor symptoms evoked higher negative sentiment regardless of whether they occurred during the day or night. For symptoms that can occur at either day or night, each nocturnal symptom was rated with a higher negative sentiment score than the same symptom during the day, regardless of the type of symptom.Conclusions: The growing share of voice and the greater negative sentiment of nocturnal symptoms from patients’ perspectives suggest that management of nocturnal symptoms is an unmet need of patients with Parkinson’s disease. A greater emphasis on detecting nocturnal symptoms and treating them with 24-hour care is encouraged.