Empower Patients With Education Resources About Pelvic Floor Disorders
April 30, 2022 4 minutes read
By Chiara Ghetti, MD
Associate Professor, Obstetrics and Gynecology, Division of Female Pelvic Medicine and Reconstructive Surgery, Washington University School of Medicine, St. Louis
SYNOPSIS: Online patient resources for pelvic floor disorders on the American Urogynecologic Society patient portal are underused by women with pelvic floor disorders.
SOURCE: Bennett AT, Gregory WT, Boniface ER, Cichowski SB. Out of “site”: Low utilization of the American Urogynecologic Society’s online patient resources in an observational study using website analytics. Female Pelvic Med Reconstr Surg 2021;27:569-574.
The main objective of this study was to estimate the use of patient-centered pelvic floor disorder (PFD) educational online resources at VoicesforPFD.org among women with PFDs in the United States. Using Google Analytics, the authors determined a total number of internet users on the website from January 2013 to December 2019. Limitations of the Google Analytics data include the fact Google Analytics cannot distinguish between users, and some users might be overcounted. User gender and age are unavailable.
The authors calculated a use rate defined as the number of users per 1,000 U.S. women with symptomatic PFDs. The number of women with PFDs was calculated by multiplying the estimated national prevalence by census data. Calculations were repeated by individual states. The authors analyzed website access during this time through a variety of avenues, including paid search, organic search, referral, social media, or direct.
Between 2013 and 2019, the number of early users of VoicesforPFD.org increased, with variability seen both within and between years. Most website traffic was from the United States (75%). In 2018, users were distributed in all 50 states. The calculated national use rate was 5.3 users for every 1,000 U.S. women with PFDs. Users accessed the site differently over the time period analyzed. Most traffic (75%) in 2019 occurred through organic search or search engine results and less than 0.5% of the site use came from social media. Among the different content sections of VoicesforPFD.org, pelvic organ prolapse was the most highly viewed section. Users viewed one to two pages, and the average session duration was between one and two minutes.
COMMENTARY
One in four people live with symptoms of at least one PFD. In older women, one in three live with symptoms of PFDs.1 Pelvic floor disorders include pelvic organ prolapse, urinary incontinence, and bowel incontinence, but also include other symptoms involving the lower urinary tract and gastrointestinal system. They have been shown to significantly affect the patient’s quality of life. Studies also have shown people know little about PFDs, there are significant disparities in pelvic floor knowledge, and lack of knowledge is associated with lower care-seeking for PFDs.2-4
Although the use of VoicesforPFD.org is rising, Bennett et al estimated less than 1% of U.S. women with PFDs are using this resource. The site content is generated by the American Urogynecologic Society’s Education Committee of physician member volunteers. In addition to webpages dedicated to pelvic organ prolapse, bladder control, bowel control, interstitial cystitis, and mesh, the site also provides information for new mothers. The site contains more than 20 downloadable English language patient fact sheets in regular and large print spanning topics related to pelvic organ prolapse, pessaries, and surgery to urinary incontinence, constipation, vaginal estrogen, and recurrent urinary tract infections, as well as third- and fourth-degree lacerations.5
Although certain assumptions were required in the analysis of the data in this study, unique user counts may be overestimated, and search algorithms change over time, affecting the validity of the results, the findings by Bennett et al demonstrate an underuse of the VoicesforPFD.org educational material by women with PFDs. While we know many patients seek medical information online, this study suggests women are not accessing information about PFDs through VoicesforPFD.org. In addition, although social media plays such a large role in information-sharing today, social media also appears underused as a tool for women’s health education.
As providers who take care of people with PFDs, we all are critical links in helping break the silence about PFDs and empowering women to understand and seek care for this and other conditions. Online patient educational resources can be shared with both reproductive age and older patients, regardless of the reason of their visit, and links to such resources can be added easily to practice websites and included in social media posts. High-quality patient information is available at VoicesforPFD.org and through the International Urogynecologic Association, with leaflets available in many other languages.
REFERENCES
- Nygaard I, Barber MD, Burgio KL, et al. Prevalence of symptomatic pelvic floor disorders in US women. JAMA 2008;300:1311-1316.
- Mckay ER, Lundsberg LS, Miller DT, et al. Knowledge of pelvic floor disorders in obstetrics. Female Pelvic Med Reconstr Surg 2019;25:419-425.
- Mandimika CL, Murk W, Mcpencow AM, et al. Racial disparities in knowledge of pelvic floor disorders among community-dwelling women. Female Pelvic Med Reconstr Surg 2015;21:287-292.
- Holst K, Wilson PD. The prevalence of female urinary incontinence and reasons for not seeking treatment. N Z Med J 1988;101:756-758.
- Voices for PFD. Fact sheets, patient summaries, and downloads. American Urogynecologic Society.
Online patient resources for pelvic floor disorders on the American Urogynecologic Society patient portal are underused by women with pelvic floor disorders.
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