Listening to the HysterSisters: Online Conversations about Hysterectomy Recovery (Preprint)

Background: In the postoperative period, individual patient experiences vary widely and are based on a diverse set of input variables influenced by all stakeholders in and throughout the surgical process. Although clinical research has primarily focused on clinical and administrative datasets to characterize the postoperative recovery experience, there is increasing interest in patient-reported outcome measures (PROMs). The growth of online communities in which patients themselves participate provides a venue to study PROMs directly. One such forum-based community is HysterSisters, dedicated to helping individuals through the experience of hysterectomy, a major surgery which removes the uterus. The surgery can be performed by a variety of methods such as minimally invasive approaches or the traditional abdominal approach using a larger incision. The community offers support for “medical and emotional issues [...] from diagnosis, to treatment, to recovery.” Users can specify when and what type of hysterectomy they underwent. They can discuss their shared experience of hysterectomy and provide, among other interactions, feedback, reassurance, sympathy, or advice, thus providing a unique view into conversations surrounding the hysterectomy experience. Objective: We aimed to characterize conversations about hysterectomy recovery as experienced by users of the HysterSisters online community. Methods: A retrospective keyword frequency analysis of the HysterSisters Hysterectomy Recovery forum was performed. Results: Within the Hysterectomy Recovery forum, 33,311 unique users declared their hysterectomy date and type and posted during the first 12 weeks postsurgery. A taxonomy of 8 primary symptom groups was created using a seed list of keywords generated from a term frequency analysis of these threads. Pain and bleeding were the 2 most mentioned symptom groups and account for almost half of all symptom mentions (19,965/40,127). For symptoms categories such as pain and hormones and emotions, there was no difference in the proportion of users mentioning related keywords, regardless of the type of hysterectomy, whereas bleeding-related or intimacy-related keywords were mentioned more frequently by users undergoing certain minimally invasive approaches when compared with those undergoing abdominal hysterectomy (AH). Temporal patterns in symptom mentions were noted as well. The majority of all posting activity occurred in the first 3 weeks. Across all keyword groups, individuals reporting minimally invasive procedures ceased forum use of these keywords significantly earlier than those reporting AH. Peaks in conversation volume surrounding particular symptom categories were also identified at 1, 3, and 6 weeks postoperatively. Conclusions: HysterSisters Hysterectomy Recovery forum and other such forums centered on users’ health care experience can provide novel actionable insights that can improve patient-centered care during the postoperative period. This study adds another dimension to the utility of social media analytics by demonstrating that measurement of post volumes and distribution of symptom mentions over time reveal key opportunities for beneficial symptom-specific patient engagement.