Quality of life impact in women with accidental bowel leakage H. W. Brown, 1 S. D. Wexner, 2 M. M. Segall, 3 K. L. Brezoczky, 4 E. S. Lukacz 1 Introduction Faecal incontinence (FI), defined by the International Continence Society (ICS) as ‘the involuntary loss of liquid or solid stool that is a social or hygienic prob- lem,’ has a significant negative impact on quality of life (QoL) even if the condition is infrequent (1,2). In our companion manuscript in this journal, we report a prevalence of 18.8% for at least yearly FI among community-dwelling United States (US) women 45 years and older, and a prevalence of 13.9% when including social or hygienic impact (3). We also report that most women with this condition prefer the term accidental bowel leakage (ABL) to describe it (3). In 2007, the National Institutes of Health (NIH) consensus panel concluded that efforts to raise public awareness about FI or ABL ‘should aim to eliminate stigma, promote disclosure and care-seeking, and reduce suffering’ (4). Thus, the goals of the Mature Women’s Health Study were to update prevalence rates for ABL and explore current impact on QoL and care-seeking behaviour. While negative impact on QoL has been fairly well established (2,5–13), rates of care-seeking for this condition vary widely and remain low, ranging from 8% to 27% (7,14,15). These low rates may be explained by embarrassment associated with FI, as well as poor understanding by the public of treatment options (16,17). The objectives of this study were to (i) update the current literature regarding attitudes, perspectives and QoL among women with ABL; (ii) identify fac- tors associated with severe impact on condition- related QoL; and (iii) determine rates of care-seeking in a large sample of community-dwelling, internet- accessible women with ABL. Our hypotheses were that a significant proportion of women with ABL would express distress related to this condition and SUMMARY Background: Accidental bowel leakage (ABL) is associated with negative impact on quality of life (QoL) and many women do not seek care. Objectives: To assess current perspectives and QoL among women with ABL; to identify factors associ- ated with severe impact on condition-specific QoL; and to describe care-seeking for ABL. Design, setting and participants: Sub-analysis of 1096 women with ABL identified through an internet-based, self-administered survey of 5817 US women ‡ 45 years old. Main outcome measure: Severe impact on QoL was defined as response of ‘affects very much’ or ‘greatly’ to any of seven domains within Pelvic Floor Impact Questionnaire. Results: QoL data were available for 85.6% (938 / 1096) of women with ABL. Domains relating to frustration, emotional health and participation in social activities demonstrated the greatest negative impact, with 39.2% (95% CI 36.1–42.4%) having overall severe impact. More fre- quent ABL, faecal urgency, nocturnal bowel movements, FI without warning, stress FI, weekly urinary incontinence and underlying bowel disorder were associated with severe impact on QoL. Of the 28.6% (268 / 938) of women who spoke to a physi- cian about their ABL, the majority did so with a general practitioner or family phy- sician (56.0%, 150 / 268). Only 19.0% (51 / 268) consulted an internist or gastroenterologist [27.2% (73 / 268)]. Conclusions: Nearly 40% of adult women with ABL have severe negative impact on QoL, but less than one-third seek care. More than half of those who seek care do so with their primary care provider. Improved awareness of the prevalence and impact of FI by these providers may decrease barriers and improve QoL. What’s known Nearly one in five mature US women suffers from faecal incontinence or accidental bowel leakage. Although the negative impact of this condition on quality of life has been explored, little is known about emotional well-being, perspectives and coping. Despite its significant negative impact on quality of life, rates of care-seeking for this condition vary widely and remain low, ranging from 8% to 27%. What’s new In the largest existing sample of US women with faecal incontinence, nearly 40% report a severe impact on quality of life, and many endorse sentiments of wishing to get one’s normal life back or feeling frequently depressed, indicating a negative impact on emotional well-being as well. Still, less than 30% have sought care from a physician. More than half who sought care did so with their primary care provider (PCP). 1 Division of Female Pelvic Medicine and Reconstructive Surgery, Department of Reproductive Medicine, UC San Diego Health System, La Jolla, CA, USA 2 Department of Colorectal Surgery, Cleveland Clinic Florida, Weston, FL, USA 3 Medical Corporation, Los Gatos, CA, USA 4 Renew Medical, Inc, Palo Alto, CA, USA Correspondence to: Emily S. Lukacz, Division of Female Pelvic Medicine and Reconstructive Surgery, Department of Reproductive Medicine, UC San Diego Health System, 9350 Campus Point Dr, #0974, La Jolla, CA 92037, USA Tel.: +1 858 657 8435 Fax: +1 858 657 6828 Email: elukacz@ucsd.edu Disclosures Heidi Brown has nothing to disclose. Steven Wexner is a paid consultant in the field of faecal incontinence for Ethicon, Inc., Oceana, Ventrus, Renew Medical, Inc., and Medtronic. Mark Segall is a paid consultant for Renew Medical, Inc. Kelly L. Brezoczky is a former employee of Renew Medical, Inc. Emily Lukacz is a paid consultant for Pfizer, consultant and recipient of grant funding from Johnson and Johnson, and research and educational grant funding from National Institutes of Health and Renew Medical, Inc. Renew Medical, Inc. markets devices for the treatment of faecal incontinence. Prior presentations Society for General Internal Medicine 34th Annual Meeting May 4–7, 2011; International Urogynecological Association 36th Annual Meeting June 28–July 22, 2011; American Urogynecologic Society 32nd Annual Meeting September 14–17, 2011. Linked Comment: www.youtube.com/IJCPeditorial ORIGINAL PAPER ª 2012 Blackwell Publishing Ltd Int J Clin Pract, November 2012, 66, 11, 1109–1116. doi: 10.1111/ijcp.12017 1109