Help-seeking Behavior for Pelvic Floor Dysfunction
December 1, 2018
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Associate Professor, Obstetrics and Gynecology, Division of Female Pelvic Medicine and Reconstructive Surgery, Washington University School of Medicine, St. Louis
Dr. Ghetti reports no financial relationships relevant to this field of study.
SYNOPSIS: Women are more likely to seek help for pelvic floor symptoms if they have increased bother and are less likely to seek help if they perceive their symptoms as normal.
SOURCE: Tinetti A, Weir N, Tangyotkajohn U, et al. Help-seeking behaviour for pelvic floor dysfunction in women over 55: Drivers and barriers. Int Urogynecol J 2018;29:1645-1653.
The objective of this study was to identify drivers and barriers to help-seeking behavior for pelvic floor disorders in older women. The study included women ≥ 55 years of age living independently in Australia. This was a cross-sectional survey of women at two retirement communities, at two family practice offices, and on Facebook using a combination of electronic and paper questionnaires.
The main outcomes were general pelvic floor symptoms, measured by Australian Pelvic Floor Questionnaire (APFQ) scores, and help-seeking behavior, measured using the Barriers to Incontinence Care Seeking Questionnaire with author modifications. The APFQ includes four subscales: bladder dysfunction, bowel dysfunction, sexual dysfunction, and prolapse. Subscale scores range from 0-10, where higher scores represent greater bother. The total score is a sum of the subscale scores. A total of 4,980 participants were invited (808 paper; 4,172 social media) to participate in the study. Of these, 427 (8.5%) agreed to participate; response rates were 27% from paper survey and 5% from Facebook. Responses were excluded for subjects who did not sign consent, who were out of the age range, and who submitted incomplete questionnaires. A total of 376 responses were included. Responders were a mean age of 68.6 years, and 98.7% of respondents scored greater than 0, indicating some pelvic floor bother.
All subscale scores were near 2.2 or less, suggesting most respondents had some pelvic floor symptoms. Fifty percent of women with symptoms measured by APFQ sought help. A large number of patients who sought help did so through a general practitioner or gynecologist, and the most common treatments employed were advice-giving and physical therapy, followed by medication and surgery. Respondents identified the following barriers to help seeking: perception of PFD as a normal part of aging (29%), self-managing their condition (21%), the condition was not serious enough to warrant treatment (18%), embarrassed to seek help (13%), and symptoms did not bother them (13%). The higher the APFQ score, the more likely a respondent was to seek help. The highest drivers to seeking help were increased bother (51.4%), worsening symptoms (49.1%), and discovery of available treatment (30.6%).
COMMENTARY
I was particularly drawn to the subject of help-seeking in women with pelvic floor disorders. As a female pelvic medicine subspecialist, I always have been curious about what drives bother, help-seeking, and decision-making in women with pelvic floor disorders. Pelvic floor disorders have a long history as silent diseases; too frequently, women are embarrassed to discuss the subject, even with their closest female friends and family. Pelvic floor disorders have been shown to affect not only activities of daily living but also mental health.1-3 This study suggests that both bother and symptoms drive help-seeking in women with pelvic floor disorders, and that is counteracted by barriers, such as the perception that their experience is a normal part of aging. This is a barrier that providers can overcome through patient education.
This study had several limitations, including the use of a small population in one country, an overall low response rate with the electronic portion of the survey, and a poor description of the measures used to assess primary outcomes. Tinetti et al used the APFQ, which, despite other existing pelvic floor questionnaires, was developed to assess broader pelvic floor symptoms, including bladder, bowel, and sexual function and prolapse symptoms; symptom severity; and the effect on quality of life. However, its scoring is difficult to uncover.4-5 The authors also used the Barriers to Incontinence Care Seeking Questionnaire, which was validated in an incontinence population and not in women with other pelvic floor disorders or community-dwelling women. In addition, they did not describe their own modifications or scoring methodology.6
Despite these limitations, their key findings are important. First, many women believe or are told that pelvic floor disorders are a normal part of aging. Second, women are embarrassed to discuss their problem. Third, women often are unaware that treatment options exist. Providers need to recognize these barriers that prevent women from seeking help for their pelvic floor disorders. These findings reinforce results from other authors. Dunivan et al reported focus group results in which women described feeling ashamed of their pelvic organ prolapse and expressed discomfort speaking with anyone, including physicians, about their symptoms.7 Themes from focus groups conducted by our group highlighted the lack of information available to women regarding pelvic prolapse and indicated that women would like to be asked about prolapse at regular gynecologic visits.8 McKay et al recently found that peripartum women lack knowledge about urinary incontinence and prolapse.9
In a survey of general gynecologists, Yune et al found the comfort level with treating pelvic floor disorders differed widely among gynecologists. Although most are comfortable offering treatment for stress incontinence and prolapse, younger gynecologists tended to be comfortable with fewer treatment options. Since full discussion of treatment options for pelvic floor options increasingly may fall within the realm of urogynecologists, obstetrician-gynecologists are perfectly poised to ask patients about their pelvic floor symptoms regularly and educate them about appropriate treatment choices. In September 2018, the Women’s Preventive Services Initiative (WPSI) published its screening recommendations for urinary incontinence in women.11 Following a systematic literature review, the WPSI recommended screening women for urinary incontinence annually. The WPSI based its recommendation on the high prevalence of urinary incontinence and the significant effect of incontinence on women’s health, quality of life, and function. Ideally, this annual screening would assess not only whether women experience symptoms of urinary incontinence but also whether incontinence affects their activities and quality of life using validated measures. In addition, the WPSI recommended referring women for additional evaluation and management if needed.
By adopting these screening recommendations, providers easily could broaden screening to include other pelvic floor disorders including prolapse, fecal incontinence, and pelvic pain. Although more common as women age, pelvic floor disorders are not just the consequence of aging, and women should not “just have to live” with the pelvic floor symptoms that bother them.
REFERENCES
- Rogers GR, Villarreal A, Kammerer-Doak D, Qualls C. Sexual function in women with and without urinary incontinence and/or pelvic organ prolapse. Int Urogynecol J 2001;12:361-365.
- Lowder JL, Ghetti C, Moalli P, et al. Body image in women before and after reconstructive surgery for pelvic organ prolapse. Int Urogynecol J 2010;21:919-925.
- Ghetti C, Lowder JL, Ellison R, et al. Depressive symptoms in women seeking surgery for pelvic organ prolapse. Int Urogynecol J 2010;21:855-860.
- Baessler K, O’Neill SM, Maher CF, Battistutta D. Australian pelvic floor questionnaire: A validated interviewer-administered pelvic floor questionnaire for routine clinic and research. Int Urogynecol J Pelvic Floor Dysfunct 2009;20:149-158.
- Baessler K, O’Neill SM, Maher CF, Battistutta D. A validated self-administered female pelvic floor questionnaire. Int Urogynecol J 2010;21:163-172.
- Heit M, Blackwell L, Kelly S. Measuring barriers to incontinence care seeking. Neurourol Urodyn 2008;27:174-178.
- Dunivan GC, Anger JT, Alas A, et al. Pelvic organ prolapse: A disease of silence and shame. Female Pelvic Med Reconstr Surg 2014;20:322-327.
- Ghetti C, Nikolajski, C, Lowder L. Knowledge and care seeking in women with pelvic organ prolapse. Female Pelvic Med Reconstr Surg 2014;20:S151-S368.
- Mckay ER, Lundsberg LS, Miller DT, et al. Knowledge of pelvic floor disorders in obstetrics. Female Pelvic Med Reconstr Surg 2018; Aug 2. doi: 10.1097/SPV.0000000000000604. [Epub ahead of print].
- Yune JJ, Siddighi S. Perceptions and practice patterns of general gynecologists regarding urogynecology and pelvic reconstructive surgery. Female Pelvic Med Reconstr Surg 2013;19:225-229.
- Screening for Urinary Incontinence in Women: A Recommendation From the Women’s Preventive Services Initiative. Ann Intern Med 2018;169. doi: 10.7326/P18-0011. Epub 2018 Aug 14.
Women are more likely to seek help for pelvic floor symptoms if they have increased bother and are less likely to seek help if they perceive their symptoms as normal.
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