1444. Utilizing Social Media to Characterize the Symptomology of Treated Adult Hydrocephalus Patients

Authors: Nitin Agarwal, MD; William Lariviere, PhD; Luke Henry, PhD; Andrew Faramand, MD; Jenna Koschnitzky, PhD; Robert Friedlander, MD (Pittsburgh, PA)

Introduction: Treated adult hydrocephalus patients report a wide range of signs and symptoms that may negatively impact quality of life, but have unknown prevalence, intensity, and persistence. We used patient engagement to prioritize the signs and symptoms for subsequent research efforts aimed at identifying patients in need of additional treatment or symptom management and at identifying sensitive measures for use in comparative effectiveness research and mechanistic studies of hydrocephalus. Methods: Adult hydrocephalus patients were engaged by scoring online responses to an inquiry that was posted on the Hydrocephalus Association’s Facebook webpages regarding signs and symptoms experienced and effects on daily life. Results: A total of 381 complaints of signs and symptoms were identified in the online postings of 82 respondents. Patients reported the full range of symptom outcomes after treatment, from worsening (5%) or no improvement (7%) of symptoms to no symptoms experienced (6%). Headache was the most common complaint made by 63% of respondents. Mobility issues related to balance, gait, or dizziness problems combined were reported by 40% of respondents. Cognition and memory problems combined were reported by 45% of respondents. Ninety-three percent of the 82 respondents, and 99% of respondents reporting any sign or symptom, reported symptoms from at least one of the three most commonly reported categories. Conclusion: The high prevalence of headache in respondents suggests an unresolved problem for the symptomatic treated adult hydrocephalus patient population and a clear area for improved care. Notably, treated patients continue to endure mobility and cognition problems, even in these young and middle-aged adult patients that use online social media. Overall, patient engagement via social media can provide quick, meaningful answers especially useful in the developmental stages of a research program including for the prioritization of outcomes for use in hydrocephalus research and patient care.