Hypothesis / aims of study
Pinterest is a social media platform designed as a “visual discovery engine” to help users discover websites and information on topics of interest. There are 322 million monthly active users, 70% female, and a growing international presence since its advent in 2010 [1]. A 2018 study showed that 36% of all adults 18 and older in the UK are using Pinterest; 49% of adults aged 35-44, 32% aged 45-54, and 21% of 55-64 year-olds [2]. In the U.S., it is the fourth most commonly used social media site among American women age 45-64, and the fifth most commonly used among those 65 and older.
Pelvic organ prolapse (POP) is a common problem with significant functional and quality of life implications. Risk factors include parity, vaginal delivery, age, connective tissue disorders, menopausal status, and disorders causing increased intra-abdominal or pelvic pressure. There are multiple modalities of treatment, including conservative management, pelvic floor muscle training (PFMT), pessary, and numerous surgical options.
Given that Pinterest content is entirely user-driven, and much of the demographic affected by POP uses Pinterest, we became interested in evaluating content available on this subject. We hypothesized that available information may not align with medical guidelines and best practices. We therefore aimed to assess the type, quality, understandability, and actionability of available POP-related content.
Study design, materials and methods
Results were analyzed by searching the term “pelvic organ prolapse,” looking closely at the first 100 pin results, which reached over five million followers. We examined the publisher of each pin and the content linked (Table 1). Using validated tools including the DISCERN criteria for quality of consumer health information and the Patient Education Materials Assessment Tool (PEMAT), we reviewed understandability and actionability of content. DISCERN criteria includes 16 questions regarding publication quality, each scored 1-5 (1=no, 3=partially, 5=yes). PEMAT contains 26 questions of which we used the 17 most relevant (13 on understandability and 4 on actionability), selecting “agree” or “disagree.” Scores for actionability and understandability were obtained by assigning one point to each “agree”, dividing by the total number of applicable questions, and multiplying by 100 (in the respective category). We further compared content to textbook standards of care and professional guidelines for discussing and treating POP. The presence of misinformation was evaluated using a Likert scale. We also evaluated for commercial bias and subjectively analyzed the overall quality of pins.
Results
Five million followers were reached with 100 pins. Surgical options for prolapse treatment was discussed in 43/100 pins (Table 1). Of posts that discuss surgery, 27.9% specifically discussed placement of either transvaginal or abdominal surgical mesh, 14.0% discussed use of native tissue, and 9.3% discussed use of biologic materials. Only 23.3% of posts that mention surgery went on to discuss the postoperative course (Table 2). Pessary was discussed in 29/100 pins as a treatment option.
Pinterest posts on PFMT as a treatment option were extremely common, discussed in 79/100 pins (Table 1). Furthermore, pins discussing PFMT often provided incomplete information – 34.2% of pins relating to PFMT failed to discuss POP symptoms, and 43% failed to discuss causes and risk factors for the condition. Complete discussion of the anatomy of prolapse was present in only 10.1% of PFMT pins. Quality was also an issue: 13.9% received a PEMAT understandability score <75%, and 26.6% had a PEMAT actionability score <75% (Table 2). Commercial bias was seen commonly, in 36/100 total pins, 31 of which were related to PFMT. 39.2% of all PFMT pins were commercially biased.
It was found that only 38/100 reviewed pins emphasized shared decision making with a physician, scoring >3 on this DISCERN criteria. Quality of life was emphasized more commonly, with 54/100 pins scoring >3 for this category. Also, 27/100 pins provided some level of misinformation.
In a subjective rating of source quality, only 36.7% of PFMT pins were rated >3, implying moderate to low quality of information in most pins.
Interpretation of results
Despite frequent use of surgical treatment for POP, the high rates of POP surgeries and various modalities were not reflected in Pinterest results. When surgery was discussed in pinned content, it was often an incomplete discussion that did not provide significant conversation about options for surgery or risks and benefits of various surgical and non-surgical options.
PFMT, on the other hand, was discussed in pinned content far more commonly. While this modality has been proven to be effective in treating mild to moderate prolapse [3], this caveat was not always reflected in the content we observed. Discussions of PFMT frequently failed to provide complete information about the problem of prolapse. PFMT was also commonly promoted with commercial bias with content being posted by trainers or therapists selling their own PFMT routines and programs.
While guidelines indicate that pessary is an appropriate first-line treatment, it was mentioned in only 29 pins. The underrepresentation of a valid and common treatment of POP is further evidence of the disproportionate representation of treatment options available on Pinterest.
The multiple treatment modalities available necessitate shared medical decision making between physician and patient, balancing quality of life with risk and benefit of each treatment. However, an overwhelming minority of pins – 38/100 – emphasized the importance of shared medical decision making with a physician, as evidenced by a DISCERN score of 4 or 5 in this category. Also, of concern is the level of misinformation available, as 27/100 pins provided information inconsistent with known guidelines and treatment standards.
Overall, subjective quality ratings were fairly low, with 63.3% rated low to moderate. Ratings were based on whether the pin provided complete and balanced information, utilized scientific evidence/data, provided sources, and gave a clear description of the treatment and alternatives. For instance, one low quality pin (score = 2) was from a strength coach discussing benefits of kettlebell training as a mode of PFMT. In addition to lack of evidence for this approach, there was no mention of options such as pessary or surgery. The alternative of traditional PFMT was misrepresented, described as consisting merely of kegels.