‘Let's talk about sex’: a patient‐led survey on sexual function after colorectal and pelvic floor surgery

Abstract

Aim: Discussions regarding sex after colorectal and pelvic floor surgery are often overlooked by clinicians. This is the first patient designed and delivered study to explore sexual function and practices after colorectal surgery. The aim was to explore the questions about sex that matter to patients and their partners following colorectal or pelvic floor surgery through a patient and public involvement survey. The results of this work will underpin the creation of a sex patient reported outcome measure.Methods: An anonymous online survey tool (Survey Monkey™) was disseminated via social media (Twitter, Facebook). Thematic analysis was applied to 130 free text comments posted by participants to identify key themes.Results: Some 632 individuals completed the survey. Most respondents were women (80% n = 507), 49.5% (n = 312) were married and 14% (n = 87) identified as LGBT+ (lesbian, gay, bisexual and transgender +). Indications for surgery varied: 34% were treated for ulcerative colitis (n = 214); 31% Crohn's (n = 196); 17% (n = 109) cancer; and 17%(n = 110) for perianal fistula. For patients who had a stoma formed (85%, n = 540), over half (51%, n = 324) lived with their stoma for 1-5 years. Respondents reported substantial alterations to their preferences for sexual positions, sexual activity and body confidence following surgery. Most respondents indicated that they were not offered advice about sex by a healthcare professional. Conclusions:The survey showed a substantial impact on the mechanics of sex following colorectal surgery. Few patients were offered preoperative information regarding sex, which has implications for informed consent. This study demonstrates a clear unmet need, voiced by patients, that open dialogue is necessary preoperatively to discuss sexual (dys)function.

Patients’ related sexual outcomes in colorectal surgery

“…Even in the healthcare system, the subject brings caution and Evolution of sexual function and marital satisfaction after colorectal surgery, in men. sometimes has not even been considered in the discussion or assessed before surgery between the surgeon and the patient according to a recent survey (20).…”

“…Each item is scored on a five-point scale, and the overall score (OS) (minimum: 5 to maximum: 75 points) is obtained by adding each item score. Erectile dysfunction (ED) is classified as severe ED (OS between 1 and 10), mild to moderate ED (11)(12)(13)(14)(15)(16)(17)(18)(19)(20)(21)(22)(23)(24)(25), and no ED (≥26).…”

How social media can help to understand treatment experiences of survivors of rare cancers: Findings from the Granulosa Cell Tumor Survivor Sisters Facebook group member survey

“…11 Beginning this work, a recent study used a consumer-led process to develop and implement a questionnaire examining the impact of colorectal cancer on sexual functioning after surgery. 14 Online social network platforms such as Facebook and Twitter have allowed those with rare conditions including cancers to connect with similar others regardless of where they live. Although the utility of social network platforms for study recruitment is increasingly acknowledged, [15][16][17] there is also growing recognition that these groups of engaged consumers offer the opportunity for bidirectional engagement with researchers to facilitate collaboration on projects relevant to consumers.…”

“…No study at that time included PPI in data collection 11 . Beginning this work, a recent study used a consumer‐led process to develop and implement a questionnaire examining the impact of colorectal cancer on sexual functioning after surgery 14 …”

The lived experience

“…For example, discussion of sex after colorectal surgery is often neglected by the surgical team, despite being a priority for patients [12]. A 2021 interdisciplinary work led by patients focused on the topic, a survey of changes in sex life after colorectal surgery, had an overwhelming response [13]. Respondents provided important findings of alterations in positions, sexual activity and body confidence following surgery, as well as the fact that most were not offered advice about sex by any healthcare professional.…”