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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.
We aimed to characterize conversations about hysterectomy recovery as experienced by users of the HysterSisters online community.
A retrospective keyword frequency analysis of the HysterSisters Hysterectomy Recovery forum was performed.
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 two 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. 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 abdominal hysterectomy. Peaks in conversation volume surrounding particular symptom categories were also identified at 1, 3, and 6 weeks postoperatively.
The 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.
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 [
The growth of online communities in which patients themselves participate provides an alternate venue to study PROMs. The authors leveraged this participation to study PROMs in online discussions about postoperative recovery initiated by people who reported undergoing hysterectomy. Hysterectomy is a surgery to remove the uterus and is done for a variety of reasons including leiomyoma (benign smooth muscle tumor), abnormal uterine bleeding, or gynecologic malignancies and can be performed through a variety of surgical approaches [
The site of the discussions was HysterSisters, an online community dedicated to “issues surrounding the hysterectomy experience […] from diagnosis, to treatment, to recovery” [
Previous work on HysterSisters administered a Likert-based satisfaction survey to a self-selected population of forum participants [
There are numerous techniques with which to approach the content analysis of online forum posts [
This study attempted to characterize more completely the recovery experience of individuals in the HysterSisters community by studying the subject headings of users’ own publicly available posts to
In accordance with the Code of Federal Regulations 45 CFR 46, the Mayo Clinic Institutional Review Board (IRB) deemed this study does not require IRB review on the basis that publicly accessible contributions to the HysterSisters forums do not constitute private behavior. No registration or login was required to read posts.
We performed a retrospective mixed methods analysis of forum posts that leveraged both structured and free-text user inputs. Qualitative assessments included development of a
The HysterSisters website provided users with the option to enter structured data including type of hysterectomy, ovarian status, and exact date of procedure [
Total abdominal (TAH)
Supracervical abdominal (SAH)
Either, not specified (TAH/SAH)
Total vaginal (TVH)
Laparoscopic-assisted vaginal (LAVH)
Total laparoscopic (TLH)
Laparoscopic supracervical (LSH)
da Vinci robotic laparoscopic (DVH)
Single-incision laparoscopic (SILS or laparoendoscopic single-site surgery [LESS])
As seen in these previous studies, LAVH is difficult to categorize as the procedure contains elements of both total vaginal hysterectomy and total laparoscopic hysterectomy procedures. In this instance, we opted to include with the vaginal group as traditionally, most critical portions of the procedure are performed through the vagina. Single-incision laparoscopic surgery (SILS), also known as laparoendoscopic single-site surgery (LESS) represented fewer than 100 individuals and was excluded from the analysis.
The
Term frequency analysis is an analytical technique that characterizes the differences between 2 text corpora by comparing the relative frequencies at which n-grams appear in each corpus [
To translate agnostic forum text into clinically meaningful information, a symptom keyword taxonomy was developed using a subjective, iterative, collaborative process between the medical and computational researchers. The initial keywords were identified using an n-gram (n=1, 2, and 3) frequency analysis of all posts in the
The final keyword symptom groups emerged as
The symptom mention frequency analysis compared the number of users who mentioned each symptom broken out by treatment group. The subject headers were tagged for symptom mentions by searching tokenized post subjects for the corresponding symptom keywords from the taxonomy. Responses were aggregated by user to compile the list of symptoms each user mentioned during the 12-week postoperative recovery period. A chi-square test for homogeneity was used to compare the mention frequencies of each symptom among individuals in each hysterectomy group with the abdominal group.
To compare whether individuals undergoing minimally invasive treatments stopped discussion of symptoms on the forum earlier than their counterparts undergoing AH, the same set of tagged subject headers was grouped by user and sorted chronologically to determine each user’s latest mention of each symptom. Those who did not mention a symptom were excluded from the survival analysis of that symptom only; in the event that more than 1 symptom category was mentioned by a user, each symptom category was considered separately. A log-rank test was used to compare the final mentions of a symptom among each treatment group. All comparisons used equality to the abdominal treatment group’s corresponding symptom survival curve as the null hypothesis. Mean interquartile difference between survival curve pairs were calculated to quantify which group ceased to mention symptom keywords earlier.
All data processing and analysis were done using free, open-source libraries written in Python (Python Software Foundation). Data processing and aggregation were performed using the
There were 33,311 unique users in the Hysterectomy Recovery forum, making at least one mention of a symptom in the taxonomy. Among these contributors, the procedure distribution is as follows: abdominal=13,306/33,311 (39.94%), vaginal=10,589/33,311 (31.79%), and laparoscopic=9416/33,311 (28.27%). Among users who provided ovary status data, there were more who kept at least one ovary (18,645/33,311, 55.97% of all users) than who had both removed (12,313/33,311, 36.96%); some did not specify their ovary status (2,353/33,311, 7.06%). Ovary status by treatment group is shown in
Site users with completed profiles created a total of 80,704 top-level posts during the first 12 weeks of their respective recoveries. The subjects of 42.43% (34,242/80,704) of these posts mentioned at least one symptom as defined by the symptom taxonomy; the remaining 57.57% (46,462/80,704) mentioned none.
Posting behavior was heavily skewed, with most posts (42,910/80,704, 53.17%) happening within the first 3 weeks of the 12-week recovery period being studied.
The 34,242 subject headers, which mention at least one symptom contain 40,127 total symptom mentions. The symptoms mentioned the most were pain (12,474/34,244, 36.43% of subject headers that mention at least 1 symptom) and bleeding (7,491/34,242, 21.88%); together, these symptoms account for half of all symptom mentions. Relevant posting behavior follows overall posting volume very closely. Proportional symptom mentions per unit time remain generally flat throughout the first 12-weeks of recovery with few important exceptions (
Ovary status by surgical approach. Total number of procedures reported by HysterSisters patients mentioning at least one symptom included in the taxonomy, stratified by surgical approach. Each procedure is broken down by ovary status. Unknown indicates patients did not provide ovary status data.
Post volume by days postoperative. Bars indicate total number of posts created by HysterSisters patients, grouped by the number of whole days postoperation the post was created. Bars are broken down by number of symptoms each post subject mentions according to the symptom taxonomy.
Symptom mention distribution over time, by week. Distribution of all symptom mentions, grouped by number of whole weeks postoperation.
There is a significant difference between the number of users who mention a symptom at any point during recovery for a given treatment group versus the abdominal group for some symptoms. For example, users attesting to VH mentioned urinary and intimacy keywords proportionally more. Users having had an LH mentioned bleeding proportionally more. Both mentioned swelling and sleep and fatigue-related keywords less. There were no differences in the frequency of mentions of pain and hormone and emotion keywords.
Absolute percentage difference for mentions of a given symptom by procedure compared with the abdominal group.
Symptom keyword | Laparoscopic (%) | Vaginal (%) |
Family | −0.05a | 0.38b |
Drugs | −0.81a | −0.60a |
Urinary | −0.50a | 2.29b,c |
Hormones and emotions | −0.49a | 0.28b |
Intimacy | −0.25a | 2.38b,c |
Sleep and Fatigue | −2.22a,d | −1.69a,e |
Swelling | −2.94a,d | −3.04a,c |
Pain | 0.21b | 0.98b |
Fever and infection | −0.42a | 0.39b |
Digestion | 1.55b | 0.41b |
Odd sensations | −0.43a | −0.96a |
Bleeding | 3.03a,d | −1.46b |
aValues indicate the abdominal cohort mentions the symptom more.
bValues indicate the abdominal cohort mentions the symptoms less.
c
d
e
Users in the minimally invasive treatment groups ceased to mention nearly all of the symptoms being studied significantly earlier versus the abdominal group, even in cases where proportionally more users mentioned the symptom. For example, users in the LH group ceased to mention bleeding at a mean interquartile difference of 1.66 days sooner (
User symptom keyword survival mean interquartile differences versus abdominal group, in days.
Symptom keyword | Laparoscopic | Vaginal |
Family | −9.3a,b | −5.0a,c |
Drugs | −3.6a,c | −1.3a |
Urinary | −7.6a,b | −4.6a,b |
Hormones and emotions | −5.6a,b | −5.6a,b |
Intimacy | −0.3a | 1d |
Sleep and fatigue | −6.3a,b | −3.6a,c |
Swelling | −7.0a,b | −4.0a,c |
Pain | −7.0a,b | −4.0a,b |
Fever and infection | −7.3a,b | −6.0a,b |
Digestion | −4.0a,b | −2.3a,b |
Odd sensations | −4.3a,b | −2.6a,c |
Bleeding | −1.6a,c | −2.0a,b |
aValues indicate an earlier cessation of mentions.
b
c
dValues indicate later cessation of mentions.
The HysterSisters forum dataset provides an opportunity not only to broadly sample patient online conversations regarding hysterectomy recovery, benchmarked by date, and type of procedure but also, more broadly, a method by which online conversations can be used to inform perioperative care for similar communities surrounding different clinical experiences.
This analysis provides rich insight into the hysterectomy recovery experience. First, the temporal dynamics of individual engagement on the forum are quite varied. Individuals seek engagement most heavily in the first 3 weeks after hysterectomy. However, there are also specific windows during the recovery in which engagement is desired. For hysterectomy, these peaks in conversation volume occur at 1, 3, and 6 weeks postoperative. In addition, the topic of interest changes as well. During the first week, digestion issues are of considerable concern, but at 1 week and beyond, a relative increase in the percentage of
Second, procedural variations should be accounted for as they may impact the clinical applications of the research. In our case, the type of hysterectomy was captured as structured data. Individuals undergoing VH make proportionally more mentions of urinary symptoms. This difference in mentions may be because of more women in this cohort undergoing concomitant prolapse or incontinence surgeries, which this analysis does not explore. Clearly, however, patients seek engagement here, and addressing urinary function can help maximize patient satisfaction with their recovery experience. We also noted topics about bleeding occurred more frequently from individuals undergoing the various laparoscopic hysterectomies. This difference in conversation frequency between approaches was in contrast to clinical data presented in the Cochrane review on surgical approach to hysterectomy where no evidence of a difference in the number of individuals with substantial bleeding between laparoscopic and AH groups was seen [
Notably, although there are no significant differences in the frequency of mentions of pain-related symptoms, the survival analysis shows the last mention of pain occurring about 7 days earlier for the laparoscopic cohort with about half of these users ceasing to mention pain by postoperative day 20. It is tempting to interpret this finding as half of the users stop experiencing pain at 3 weeks, but this may not be the case. More appropriately, as users’ experience begins to match their expectations for pain or any particular symptom, the need to engage socially may diminish. As noted above, reengagement can occur when expectation-experience mismatching occurs.
Nevertheless, with the exception of intimacy-related keywords, cessation of symptom mentions occurs earlier in the vaginal and laparoscopic cohorts across all symptom groups. Therefore, although our analysis is not intended to deliver concrete recommendations as to the route of hysterectomy, the findings do parallel those in clinical gynecology literature where return to normal activities was found to occur earlier after vaginal and laparoscopic hysterectomies versus the abdominal approach [
Taken together, these findings can help guide clinical postoperative care. For example, the interquartile difference in days for cessation of bleeding mentions is only 2.0 days for the vaginal compared with AH groups; therefore, practically, bleeding should be discussed regardless of hysterectomy type and remains a concern throughout the recovery process. In addition, gastrointestinal and genitourinary symptoms should receive focus early (at discharge), whereas providers should be sure to address intimacy issues at the final postoperative visit and reassure patients of their ongoing availability for care as the patients’ needs may continue past the typical 6-week clinical recovery period. We present a simple reminder chart to alert providers to review these critical topics (
Although internet search and online forum usage are rising among patients, patients still overwhelmingly turn to their doctor for medical expertise. In 1 study, 91% of patients sought their doctor for medical diagnosis. However, when asked about
This analysis has important
Second, this analysis should not be seen as equating mentions of symptoms with patient complaint. Deeper analysis could begin to explore subject headers, post content, and conversational patterns related to motivation.
Finally, almost 60% of posts in the Hysterectomy Recovery board did not fall into our taxonomy. Excluded subject headers include a variety of content, including nonsymptom issues (eg, return to activity, comorbid condition issues, or nonmedical topics such as
This study presents a first look into text analytics to explore the patient experience in gynecologic care and how such research might be conducted in other fields. Focus is limited, however, to the subject headers of posts by site users. Future research analyzing the post body itself and other conversational elements and patterns, we can begin to ascertain the underlying motivation for posting.
Discuss: gastrointestinal and genitourinary function; typical delay in return of normal bowel function; symptoms of urinary retention versus return of normal voiding; proper pain medication use; bleeding expectations
Discuss: reassure that intermittent light bleeding is normal if present; ensure adequate return of bowel and bladder function; readdress pain control
Discuss: general check-in with patient; identify individual issues; address hormones, emotional changes, and coping strategies
Discuss: return to normal activity; return to sexual activity; address hormonal changes if persistent or indicated; review possibility of light bleeding 10 weeks postoperative
Our results demonstrate a timeline of posts with shifting conversational volume in specific areas, with the majority of posts occurring in the first 2 weeks. Future research can integrate this information into existing personalized electronic health programs for recovery from gynecologic surgery to deliver
We hope that our results provide insight to both the gynecologic surgeon as to what their patients are discussing after hysterectomy and the data scientist using this information to better analyze similar text-based data sets in other fields.
Symptom keyword taxonomy, alphabetical.
Symptom keyword taxonomy, by mentions.
Patients who mention a symptom during the recovery period. Each patient is counted at most once per symptom, even if the symptom was mentioned multiple times.
abdominal hysterectomy
Institutional Review Board
laparoscopic hysterectomy
patient-reported outcome measure
vaginal hysterectomy
No financial support was solicited or used for the conduct of this research. Coauthors from W2O Group provided computational resources and statistical analysis services at no cost to the authors and participated in the preparation of the Methods and Results sections.
Authors AB, JB, and HB are employees of W2O Group. YG was an employee of W2O Group at the time of data collection and initial submission. W2O Group lists Intuitive Surgical (Sunnyvale, CA) as a client. No funding from Intuitive Surgical was obtained for this study. W2O Group subsidiaries offer commercial data analytics and marketing services in numerous economic sectors, including health care.
AD was a surgical fellow at Mayo Clinic at the time of data collection and initial submission.