Background
Internet resources are becoming increasingly important for patients seeking medical knowledge. It is imperative to understand patient use and preferences for using the Internet and social networking websites to optimize patient education.
Objectives
The purpose of this study was to evaluate social networking and Internet use among women with pelvic floor complaints to seek information for their conditions as well as describe the likelihood, preferences, and predictors of website usage.
Study Design
This was a cross-sectional, multicenter study of women presenting to clinical practices of 10 female pelvic medicine and reconstructive surgery fellowship programs across the United States, affiliated with the Fellows’ Pelvic Research Network. New female patients presenting with pelvic floor complaints, including urinary incontinence, pelvic organ prolapse, and fecal incontinence were eligible. Participants completed a 24 item questionnaire designed by the authors to assess demographic information, general Internet use, preferences regarding social networking websites, referral patterns, and resources utilized to learn about their pelvic floor complaints. Internet use was quantified as high (≥4 times/wk), moderate (2–3 times/wk), or minimal (≤1 time/wk). Means were used for normally distributed data and medians for data not meeting this assumption. Fisher’s exact and χ 2 tests were used to evaluate the associations between variables and Internet use.
Results
A total of 282 surveys were analyzed. The majority of participants, 83.3%, were white. The mean age was 55.8 years old. Referrals to urogynecology practices were most frequently from obstetrician/gynecologists (39.9%) and primary care providers (27.8%). Subjects were well distributed geographically, with the largest representation from the South (38.0%). Almost one third (29.9%) were most bothered by prolapse complaints, 22.0% by urgency urinary incontinence, 20.9% by stress urinary incontinence, 14.9% by urgency/frequency symptoms, and 4.1% by fecal incontinence. The majority, 75.0%, described high Internet use, whereas 8.5% moderately and 4.8% minimally used the Internet. Women most often used the Internet for personal motivations including medical research (76.4%), and 42.6% reported Google to be their primary search engine. Despite this, only 4.9% primarily used the Internet to learn about their pelvic floor condition, more commonly consulting an obstetrician-gynecologist for this information (39.4%). The majority (74.1%) held a social networking account, and 45.9% visited these daily. Nearly half, 41.7%, expressed the desire to use social networking websites to learn about their condition. Women <65 years old were significantly more likely to have high Internet use (83.4% vs 68.8%, P = .018) and to desire using social networking websites to learn about their pelvic floor complaint ( P = .008). The presenting complaint was not associated with Internet use ( P = .905) or the desire to use social networking websites to learn about pelvic floor disorders ( P = .201).
Conclusion
Women presenting to urogynecology practices have high Internet use and a desire to learn about their conditions via social networking websites. Despite this, obstetrician-gynecologists remain a common resource for information. Nonetheless, urogynecology practices and national organizations would likely benefit from increasing their Internet resources for patient education in pelvic floor disorders, though patients should be made aware of available resources.
Internet resources have become essential to communication. In 2007, 69% of adults in the United States reported having access to the Internet, with 23% of those using social networking websites (SNW). By 2015, 35% of adults >65 years old reported the use of social networking websites.
While it is no surprise that adolescents are familiar with Internet resources and prefer technology-based health interventions, approximately half of individuals using the Internet on a regular basis were born before 1964. Seventy-six percent of Internet users report accessing websites to look for health information, and the rate of adults 55–64 years of age using the Internet for health information is similar to that of younger individuals. Thus, using the Internet for outreach and education in these populations may be beneficial.
Social networking websites are emerging as a resource for health-related information. Social networking websites have been shown to help with research recruitment, sexual practice education, and providing support for individuals with certain diseases or disorders. In a survey by Thakeray et al, 31% of adults were using social networking websites for health-related activities. Researchers have found Facebook to be a beneficial tool both for physicians and patients in cardiovascular care.
This poses a unique opportunity for the emerging field of female pelvic medicine and reconstructive surgery. Women with pelvic floor disorders are often dissatisfied with their care because of a poor understanding of their conditions. Senekjian et al reported that a significant proportion of women are unfamiliar with urogynecological terminology. Only 25% of women surveyed understood the meanings of urinary incontinence, pelvic organ prolapse, and pelvic floor disorder, and 18% were unfamiliar with the meaning of all 3 conditions. Of those with stress incontinence, 88% knew the definition of stress urinary incontinence. While there has been a gradual increase in useful medical information posted by health professionals, most websites related to urogynecological conditions have not been validated according to the most recent reports.
Although data are increasing regarding Internet use, there is a paucity of information on patient use and preferences for seeking pelvic floor health information on the Internet. Female pelvic medicine and reconstructive surgery patients represent a unique demographic. Pelvic floor disorders are conditions that do not enjoy mainstream attention, perhaps because of their personal or embarrassing nature. Enhanced understanding of patient Internet use and preferences has the potential to improve patient education and subsequently patient satisfaction with care received from their pelvic floor specialist.
The primary aim of our study was to evaluate social networking websites and Internet use among women with pelvic floor complaints, with secondary aims to describe the likelihood, preferences, and predictors of websites use to seek information for their conditions.
Materials and Methods
This was a multicenter, cross-sectional survey study of women presenting to clinical practices associated with 10 female pelvic medicine and reconstructive surgery fellowship programs across the United States. The study was conducted within the Fellows’ Pelvic Research Network, a multicenter research consortium of female pelvic medicine and reconstructive surgery fellows, overseen by the Society of Gynecologic Surgeons and the American Urogynecologic Society. Institutional review board approval was obtained at each of the 10 participating sites. Each site was asked to record their respective response rates. Because of the descriptive nature, 300 surveys were deemed to be an appropriate sample size, and each site was asked to recruit at least 30 participants.
New female patients >18 years of age presenting with specified pelvic floor complaints were eligible. These complaints were limited to stress urinary incontinence, urgency urinary incontinence, urinary urgency/frequency (overactive bladder), fecal urgency/incontinence, and pelvic organ prolapse. Patients who were unable to comprehend English or had a diagnosis of dementia were excluded.
Subjects were approached at their first visit to the female pelvic medicine and reconstructive surgery practice, and written informed consent was obtained after the study was explained to them by study personnel. A cover letter accompanied the survey describing the purposes of the study and assuring confidentiality. Subjects completed the questionnaire in private and were not allowed to ask members of the research team questions regarding the survey.
Participants were administered an anonymous 24 item written questionnaire (7 screening items not shown) including primarily multiple-choice questions with options for write-in responses ( Table 1 ). The questionnaire was designed by the authors to assess demographic information, general Internet use, preferences regarding social networking websites, referral patterns, and resources utilized to learn about their pelvic floor complaints. The survey was pretested among a sample of residents, female pelvic medicine and reconstructive surgery fellows, nurses, and female pelvic medicine and reconstructive surgery attending physicians, and suggested edits were incorporated into the final version.
| Questions a |
|---|
| Question 1 |
Of your complaints (that you previously marked on question 7), which is the most bothersome? Choose only 1 answer.
|
| Question 2 |
How often did you use the Internet in the past 4 weeks?
|
| Question 3 |
For what reasons do you most often use the Internet? Choose only one.
|
| Question 4 |
When your symptoms that brought you to the doctor today first started, had you heard about your condition?
|
| Question 5 |
When your symptoms that brought you to the doctor today first started, did you know what your condition was called?
|
| Question 6 |
| How long were you having symptoms before coming to the doctor today? (Please indicate a number and whether this time frame is in days, months, years, etc.) ___________________________ |
| Question 7 |
How did you learn about your condition for which you are seeking treatment today?
|
| Question 8 |
How were you referred to your urogynecologist/gynecologist/urologist today?
|
| Question 9 |
Have you used the Internet or any social media sites to learn more about your condition or pelvic problem?
|
| Question 10. |
If you used the Internet to research or learn more about your condition, what site did you use? Circle all that apply.
|
| Question 11 |
To which type of social networking site do you have an account? Circle all that apply.
|
| Question 12 |
If you have a social networking account, how often to do you access it?
|
| Question 13 |
If you have a Facebook account, how often do you access it?
|
| Question 14 |
If you were to use the Internet to learn about your condition, which type of site would you use? Circle all that apply.
|
| Question 15 |
If your physician had a Facebook page, would you visit it?
|
| Question 16 |
How would you use the Facebook page?
|
| Question 17 |
In general, would you like to use social networking sites to learn more about your condition or complaint?
|
a Seven demographic and screening questions preceded the survey items.
The survey initiated with demographic items regarding age, race, education, geographic habitation, income, and presenting complaints. Participants were given an option to select “other” for presentation complaints to identify ineligible surveys. They were allowed to select multiple answers for the presenting complaint but were also asked to identify the most bothersome or chief complaint necessitating the presentation to the practice. Items regarding knowledge/understanding of their disorder, symptom onset, and referral patterns were also included.
Participants were then queried on Internet use. Referencing other studies, we quantified use as high (≥4 times/wk), moderate (2–3 times/wk), minimal (≤1 time/wk), or no use. Subjects were asked to identify whether they used the Internet for mostly professional or personal reasons. Social networking websites use as well as preferences regarding Internet and social networking websites use for medical information was also assessed.
Age was further subdivided into women <65 years of age and women ≥65 years old and education subdivided into those with and without a college degree to allow for comparisons. The age categories were selected in reference to divisions used in other reports.
The data were analyzed using IBM SPSS Statistics software (version 22.0; Armonk, NY). Descriptives were reported using means and standard deviation for normally distributed data and median and interquartile range for data not meeting this assumption. Fisher’s exact, χ 2 and analysis of variance were used to evaluate associations between variables and Internet use.
Results
A total of 397 women were approached to participate, and 314 completed surveys, for a response rate of 79%. After exclusion of ineligible surveys because the participant was lacking at least 1 required presenting symptom, 282 were analyzed. Demographic information is listed in Table 2 . The majority of participants were non-Hispanic (90.9%), white (83.3%), completed high school or beyond (93.9%), and had an annual household income >$60,000 (51.3%). The mean age was 55.8 years (SD 14.5), with a range of 21–90 years of age. The respondents were relatively evenly distributed with regard to region of habitation; however, the largest proportion lived in the southern United States (38.0%) ( Table 2 ).
| Variables | n | Percentage |
|---|---|---|
| Age, y | ||
| 18–35 | 24 | 8.6 |
| 36–44 | 37 | 13.2 |
| 45–54 | 71 | 25.4 |
| 55–64 | 61 | 21.8 |
| 65–74 | 60 | 21.4 |
| >75 | 27 | 9.6 |
| Ethnicity | ||
| Non-Hispanic | 251 | 90.9 |
| Hispanic | 25 | 9.1 |
| Race | ||
| Asian | 7 | 2.5 |
| Biracial | 4 | 1.5 |
| Black | 27 | 9.8 |
| Other | 8 | 2.9 |
| White | 229 | 83.3 |
| Education | ||
| Some high school | 17 | 6.0 |
| High school graduate | 48 | 17.1 |
| Some college | 79 | 28.1 |
| College graduate | 83 | 29.5 |
| Postgraduate degree | 54 | 19.2 |
| Geographic location | ||
| Northeast | 50 | 18.8 |
| South | 101 | 38.0 |
| Midwest | 53 | 19.9 |
| West | 62 | 23.3 |
| Annual household income | ||
| <$10,000 | 22 | 8.4 |
| $10,000–$24,999 | 27 | 10.3 |
| $25,000–$44,999 | 43 | 16.3 |
| $45,000–$59,999 | 36 | 13.7 |
| $60,000–$74,999 | 23 | 8.7 |
| $75,000–$99,999 | 26 | 9.9 |
| $100,000–$149,999 | 40 | 15.2 |
| >$150,000 | 46 | 17.5 |
Nearly half of the respondents complained of stress urinary incontinence (48.2%, n = 136), urgency urinary incontinence (48.9%, n = 138), or overactive bladder (48.2%, n = 136). When asked to indicate their most bothersome symptom, the largest proportion of participants were most bothered by pelvic organ prolapse (29.9%) ( Table 3 ). Subjects stated that they had heard about their conditions prior to presentation to the office (67.9%, n = 180), but half (50.7%, n = 137) did not know the medical terminology for their symptoms.
| Complaint | n | % |
|---|---|---|
| Stress urinary incontinence | 56 | 20.9 |
| Urge incontinence | 59 | 22.0 |
| Pelvic organ prolapse | 80 | 29.9 |
| Fecal incontinence | 11 | 4.1 |
| Frequency/urgency | 40 | 14.9 |
| Other | 22 | 8.2 |
The median length of time between onset of symptoms and presentation to a specialist was 24 months (interquartile range, 60 months; range, 7 days to 45 years). The time to presentation was evaluated based on the most bothersome presenting symptom, and these are reported in Table 4 . The patients were frequently referred to the practice by an obstetrician-gynecologist (39.9%, n = 105) or a primary care provider (27.8%, n = 73). Thirty-five women (12.4%) were self-referred to the female pelvic medicine and reconstructive surgery practice.
| Most bothersome complaint | n | Median | Interquartile range |
|---|---|---|---|
| Stress urinary Incontinence | 55 | 4.5 a | 7.0 |
| Urge incontinence | 57 | 2.0 | 5.0 |
| Pelvic organ prolapse | 74 | 2.0 a | 3.7 |
| Fecal incontinence | 11 | 5.0 | 5.0 |
| Frequency/urgency | 38 | 2.0 | 3.5 |
| Other | 18 | 2.0 | 5.7 |
a Post hoc pairwise comparison showed a significant difference between stress urinary incontinence and pelvic organ prolapse ( P = .002).
The majority, 75.0% (n = 204), described high Internet use, whereas 8.5% (n = 23) attested to moderate and 4.8% (n = 13) to minimal use of the Internet. Thirty-two women (11.8%) denied using the Internet at all. Women most often used the Internet for personal reasons including medical inquiries (76.4%, n = 207), compared with use for professional or work-related activities (11.8%, n = 32). Nearly half (42.6%, n = 120), reported Google to be their primary search engine for seeking this information. Fifty-three percent (n = 139) used the Internet or social networking websites to some capacity to learn more about their pelvic floor condition. Only 4.9% (n = 13) reported the Internet as their sole means to learning about their condition, while the largest proportion most often consulted an obstetrician-gynecologist for this information (39.4%, n = 104). Of the 33 women who were self-referred, 81.3% (n = 26) reported high Internet use, and 62.5% (n = 20) reported using the Internet or social networking websites to learn more about their symptoms.
With regard to social networking websites, 74.1% reported having at least 1 account, but only 21.1% of this group was ≥65 years of age ( Table 5 ). However, 50.6% (n = 41) of all women ≥65 years old stated they had at least 1 social networking website account. Nearly all women (90.3%) with social networking websites accounts had a Facebook account, and 21.1% (n = 37) of this group was ≥65 years of age.
| Responses | n | % |
|---|---|---|
| To which type of SNW do you have an account? (n = 263) | ||
| At least 1 SNW account | 195 | 74.1 |
| <65 y old | 153 | 78.9 |
| ≥65 y old | 41 | 21.1 |
| Age not reported | 1 | |
| Type of SNW accounts (multiple answers allowed) | ||
| 176 | 90.3 | |
| ≤64 y old | 138 | 78.9 |
| ≥65 y old | 37 | 21.1 |
| Age not reported | 1 | |
| 53 | 27.1 | |
| 50 | 25.6 | |
| YouTube | 42 | 21.5 |
| 39 | 20.0 | |
| Google plus | 36 | 18.5 |
| Myspace | 4 | 2.1 |
| Other | 10 | 5.1 |
| No SNW account | 68 | 25.9 |
| <65 y old | 28 | 41.2 |
| ≥65 y old | 40 | 58.8 |
| If you have a social networking account, how often do you access it? (n = 255) | ||
| Daily | 117 | 45.9 |
| 4–6 times/wk | 19 | 7.5 |
| 2–3 times/wk | 18 | 7.1 |
| If you have a Facebook account, how often do you access it? (n = 249) | ||
| Daily | 111 | 44.6 |
| 4–6 times/wk | 17 | 6.8 |
| 2–3 times/wk | 21 | 8.4 |
| Would you like to use SNW to learn more about your condition? (n = 259) | ||
| Yes | 108 | 41.7 |
| No | 151 | 58.3 |
| If your physician had a Facebook page, would you visit it? (n = 264) | ||
| Yes | 100 | 37.9 |
| Not sure | 91 | 34.5 |
| No | 73 | 27.7 |
| How would you use the [physician’s] Facebook page? (n = 238) (multiple answers allowed) | ||
| Obtain information about the physicians | 79 | 32.8 |
| Gather information about the practice | 77 | 32.4 |
| Have discussion with other patients | 31 | 13.0 |
| Other | 15 | 6.3 |
| Would not use | 89 | 37.4 |
When asked whether they would like to use social networking websites to learn about their condition, 41.7% responded “yes” ( Table 5 ). Over a third, 37.9%, would visit a physician’s Facebook page if such a website existed, mostly to gather information about the physician or practice ( Table 5 ).
Compared to women ≥65 years of age, women <65 years old were significantly more likely to report high Internet use (82.3% vs 58.3%, P < .001) and to utilize online resources for medical information (59.2% vs 40.2%, P = .004) ( Figure ). Younger women (<65 years old) were also more likely to have used social networking websites to learn about their pelvic floor complaint ( r pb = -0.181, P = .003) and to desire using social networking websites to learn about their condition ( χ21df
χ 1 d f 2
= 6.930, P = .008). Women describing high Internet use were also more likely to express a desire to use social networking websites to learn about their pelvic floor complaint ( χ21df
χ 1 d f 2
= 4.101, P = .043).
There was an association between education level and high Internet use ( χ24df
χ 4 d f 2
= 14.084, P = .007) as well as a desire to use social networking websites to learn about pelvic floor complaints, though the latter finding neared but did not reach significance when women were dichotomized based on the presence or absence of a college degree ( χ21df
χ 1 d f 2
= 3.615, P = .057) ( Table 6 ).
