JMIR Publications

ABSTRACT

Background:

Despite increased focus on patient-centered care, physicians remain pressured by time constraints. Physicians must optimize perioperative counseling during this limited time. Although patients experience major complications infrequently, minor complications are more common and can negatively impact quality of life. These complications may be inadequately addressed during clinical counseling prior to surgery. As a result, less time may be spent discussing common but non-life threatening symptoms. However, these still significantly impact patient quality of life. This creates an information gap that patients attempt to bridge, often through phone calls during the recovery period. Increasingly, patients are turning to social media such as online health communities to seek answers and reassurance. One such community is HysterSisters, which is “dedicated to medical and emotional issues surrounding the hysterectomy experience […], supporting women from diagnosis, to treatment, to recovery.” It offers a unique view into patients’ conversations surrounding hysterectomy and other gynecologic care.

Objective:

To characterize conversation about hysterectomy recovery as experienced by members of the HysterSisters online community.

Methods:

A retrospective keyword frequency and survival analysis of the HysterSisters Hysterectomy Recovery forum.

Results:

Over 1.78 million posts in total were captured from the HysterSisters forum. Among the users who created these posts were 69,950 patients who declared their hysterectomy type and date. Among these posts were also 80,704 threads from the Hysterectomy Recovery board that were posted since 2005 and during the author’s first 12 weeks post-op by 33,311 unique patients who declared hysterectomy type and date. A symptom taxonomy of 8 primary symptom groups was created using a seed list of symptoms generated from a three-gram keyword frequency analysis of these threads. Patient post volumes and distribution of symptom mentions over time reveal key times for potential beneficial symptom-specific patient engagement during recovery. Pain, bleeding and hormones/emotions were the three most mentioned symptom groups and account for over half of all symptom mentions. Minimally invasive hysterectomies were compared against abdominal hysterectomy. There is no significant difference in the proportion of patients who mention pain- and hormone/emotion-related keywords during their recovery across all procedures. As compared to the abdominal hysterectomy group, mentions of bleeding-related keyword mentions were more common in the laparoscopic group, while urinary and intimacy-related keywords were more common in the vaginal hysterectomy group. Nevertheless, the interquartile difference in days for the final mention of these keywords is significantly earlier across all keyword groups for the minimally invasive procedures.

Conclusions:

Analysis of the HysterSisters Hysterectomy Recovery forum reveals a rich source of information about patient experience and provides novel actionable insights that can improve patient-centered care during the postoperative period.