David Droullard, MD, Mariam Hantouli, MD, Alex Lois, MD, David Flum, MD, MPH, Lisa Strate, MD, MPH; University of Washington, Seattle, WA
Introduction: Many patients with diverticular disease (DD) have chronic symptoms impairing quality of life, however therapeutic options remain limited. Patients with chronic diseases are increasingly using social media, such as private Facebook groups, to provide support and share self-management strategies. Among users of DD support groups on Facebook, we aim to characterize burden of disease, preferred sources of information, and self-management strategies. Methods: An anonymous 37-question survey (Qualtrics™) assessing DD history and impact (using the Diverticulitis Quality of Life Index (DV-QOL), 4 domains scored 0-10 with higher scores representing worse QOL), self-management strategies, and information sources was conducted in the 4 largest Facebook groups for DD (between 6,497 and 21,616 members) from 2/8/20 to 4/9/20. For all completed questions, we described mean and standard deviation for continuous variables and proportions for categorical variables. Results: 1,062 responded (63% completion rate), 90% female and 55% greater than 50 years old. Mean (SD) composite DV-QOL was 4.5 (2.0), Physical Symptoms 4.0 (2.3), Concerns 5.7 (2.9), Emotions 5.5 (2.6), and Behavior 3.5 (2.2). 99% were diagnosed by a clinician, 73% reported chronic disease ( >1 year since diagnosis), 65% reported at least two episodes of acute diverticulitis, 19% had undergone colon resection, and 30% reported concurrent diagnosis of irritable bowel syndrome. 7.9% of respondents reported trying medication therapy (rifaximin and/or mesalamine), while 96% had made dietary changes, 89% had taken supplements or over-the-counter medications, and 75% had made lifestyle changes (Table 1). 65% accessed the groups at least once daily. 97% of respondents sought information on managing their disease from Facebook groups, compared to 82% from healthcare providers (56% gastroenterology, 54% primary care, 33% surgery), 75% from search engines, and 67% from health websites. Discussion: Facebook support groups for DD are more frequently used by women and patients with chronic symptoms with a high degree of QOL impairment that is not always clinically recognized. Engagement with patient social media groups allows the researcher to identify the interests and unmet needs of this patient community that are crucial for designing patient-centered research.
Table 1: Most common self-management strategies, by percent of respondents to each question (Diet n = 920, Supplements n = 931, Lifestyle n = 893).
Disclosures: David Droullard indicated no relevant financial relationships. Mariam Hantouli indicated no relevant financial relationships. Alex Lois indicated no relevant financial relationships. David Flum indicated no relevant financial relationships. Lisa Strate indicated no relevant financial relationships.