TY - JOUR AU - Friedman, Sonia AB - Fertility, J-pouch, Inflammatory bowel disease, Ulcerative colitis, Surgery Introduction Construction of an ileal pouch–anal anastomosis, also known as a J-pouch, is the operation of choice for most cases of refractory ulcerative colitis (UC) and is associated with improved health-related quality of life and patient satisfaction.1 Despite these potential benefits, an increase in infertility by up to 3-fold is one potential surgical consequence of an open J-pouch procedure, likely owing to tubal occlusions and pelvic adhesion formation.2 Ensuring that female patients with refractory UC are provided with adequate information to make informed personal decisions about surgical options is of critical importance. Investigation of the specific recommendations made by health care providers concerning J-pouch surgery will allow for the identification of knowledge gaps and encourage an increase in collaboration and education amongst the various medical specialties engaged in care for female patients with inflammatory bowel disease (IBD). In this study, we aimed to assess health care providers’ general knowledge of the impact of the J-pouch procedure on female fertility. We sought to determine providers’ recommendations regarding UC and fertility, and timely creation of the J-pouch vs preserving fertility. Methods Study Design Survey questions were developed by physicians in the fields of adult gastroenterology (S.F., R.W., P.D.), pediatric gastroenterology (H.W.), maternal-fetal medicine (T.M.), and colorectal surgery (J.G.), all with expertise in IBD. Questions were designed to encompass 4 domains of clinician information including demographics (age, gender, medical specialty, practice type and number of IBD patients cared for), knowledge about the J-pouch procedure as it relates to female fertility, comfort in discussing fertility complications of the J-pouch surgery, and finally, recommendations regarding J-pouch surgery made for female patients with IBD (see Supplementary Table 1). The survey was piloted among a group of physicians, a process that resulted in 19 Likert scale questions, most with 4 to 5 response options. An invitation to complete both the survey and consent form was distributed to listservs and individuals from professional societies for clinicians who provide care for patients with IBD (see Supplementary Methods). Survey responses were collected from February to September 2021 and were gathered via Research Electronic Data Capture (REDCap). The Partners Human Research Committee provided institutional review board approval for this study. Data were analyzed using the statistical software SPSS for Windows, version 27 (IBM Corporation, Armonk, NY). Statistical Analysis Kruskal-Wallis statistical testing was used to compare Likert scale variables across various medical specialties. For Kruskal-Wallis tests which met the specified level of significance, post hoc pairwise comparisons were made to further specify significant relationships between variables. Multivariate linear regression was carried out to determine associations between demographic characteristics and specific survey responses. Results Demographics and Characteristics Among 933 health care providers who received and opened the survey, a total of 233 carried it to completion, with a response rate of 25% (Table 1). Providers in the field of adult gastroenterology comprised 59.2% of participants, followed by pediatric gastroenterology (20.6%), colorectal surgery (13.7%) and obstetrics and gynecology (6.4%). In total, 47.2% of participants cared for more than 100 patients with IBD per year, and 39.8% of providers cared for >50 female patients with UC per year. Table 1. Survey respondent characteristics and demographics Total number of survey participants 233 Survey participant age, y 46.8 ± 12.7 Medical practice (academic) 194 (83.3) Medical specialties  Adult gastroenterology 138 (59.2)   Physician 111 (80.4)   Advanced practice provider 27 (19.6)  Pediatric gastroenterology 48 (20.6)   Physician 45 (93.8)   Advanced practice provider 3 (6.2)  Colorectal surgery 32 (13.7)   Physician 24 (75.0)   Advanced practice provider 8 (25.0)  Obstetrics and gynecology 15 (6.4)   Physician 12 (80.0)   Advanced practice provider 3 (20.0) Years in practice  0-5 60 (25.9)  6-10 42 (18.1)  11-15 22 (9.5)  >15 108 (46.6) Number of IBD patients cared for annually  <10 24 (10.3)  11-50 59 (25.3)  51-100 40 (17.2)  101-250 34 (14.6)  >250 76 (32.6) Number of female patients with UC cared for annually  <10 45 (19.5)  10-30 67 (29.0)  31-50 27 (11.7)  >50 92 (39.8) Health care providers practicing internationally 68 (29.2) Total number of survey participants 233 Survey participant age, y 46.8 ± 12.7 Medical practice (academic) 194 (83.3) Medical specialties  Adult gastroenterology 138 (59.2)   Physician 111 (80.4)   Advanced practice provider 27 (19.6)  Pediatric gastroenterology 48 (20.6)   Physician 45 (93.8)   Advanced practice provider 3 (6.2)  Colorectal surgery 32 (13.7)   Physician 24 (75.0)   Advanced practice provider 8 (25.0)  Obstetrics and gynecology 15 (6.4)   Physician 12 (80.0)   Advanced practice provider 3 (20.0) Years in practice  0-5 60 (25.9)  6-10 42 (18.1)  11-15 22 (9.5)  >15 108 (46.6) Number of IBD patients cared for annually  <10 24 (10.3)  11-50 59 (25.3)  51-100 40 (17.2)  101-250 34 (14.6)  >250 76 (32.6) Number of female patients with UC cared for annually  <10 45 (19.5)  10-30 67 (29.0)  31-50 27 (11.7)  >50 92 (39.8) Health care providers practicing internationally 68 (29.2) Values are n, mean ± SD, or n (%). Abbreviations: IBD, inflammatory bowel disease; UC, ulcerative colitis. Open in new tab Table 1. Survey respondent characteristics and demographics Total number of survey participants 233 Survey participant age, y 46.8 ± 12.7 Medical practice (academic) 194 (83.3) Medical specialties  Adult gastroenterology 138 (59.2)   Physician 111 (80.4)   Advanced practice provider 27 (19.6)  Pediatric gastroenterology 48 (20.6)   Physician 45 (93.8)   Advanced practice provider 3 (6.2)  Colorectal surgery 32 (13.7)   Physician 24 (75.0)   Advanced practice provider 8 (25.0)  Obstetrics and gynecology 15 (6.4)   Physician 12 (80.0)   Advanced practice provider 3 (20.0) Years in practice  0-5 60 (25.9)  6-10 42 (18.1)  11-15 22 (9.5)  >15 108 (46.6) Number of IBD patients cared for annually  <10 24 (10.3)  11-50 59 (25.3)  51-100 40 (17.2)  101-250 34 (14.6)  >250 76 (32.6) Number of female patients with UC cared for annually  <10 45 (19.5)  10-30 67 (29.0)  31-50 27 (11.7)  >50 92 (39.8) Health care providers practicing internationally 68 (29.2) Total number of survey participants 233 Survey participant age, y 46.8 ± 12.7 Medical practice (academic) 194 (83.3) Medical specialties  Adult gastroenterology 138 (59.2)   Physician 111 (80.4)   Advanced practice provider 27 (19.6)  Pediatric gastroenterology 48 (20.6)   Physician 45 (93.8)   Advanced practice provider 3 (6.2)  Colorectal surgery 32 (13.7)   Physician 24 (75.0)   Advanced practice provider 8 (25.0)  Obstetrics and gynecology 15 (6.4)   Physician 12 (80.0)   Advanced practice provider 3 (20.0) Years in practice  0-5 60 (25.9)  6-10 42 (18.1)  11-15 22 (9.5)  >15 108 (46.6) Number of IBD patients cared for annually  <10 24 (10.3)  11-50 59 (25.3)  51-100 40 (17.2)  101-250 34 (14.6)  >250 76 (32.6) Number of female patients with UC cared for annually  <10 45 (19.5)  10-30 67 (29.0)  31-50 27 (11.7)  >50 92 (39.8) Health care providers practicing internationally 68 (29.2) Values are n, mean ± SD, or n (%). Abbreviations: IBD, inflammatory bowel disease; UC, ulcerative colitis. Open in new tab Knowledge Regarding the J-Pouch Procedure Most clinicians (75.5%, n = 176) were aware that fertility rates are similar between women with medically treated, quiescent UC and women without UC. Most (73.4%, n = 171) providers correctly identified that fertility is overall decreased following an open J-pouch procedure, but over half (65.6%, n = 153) overestimated, underestimated, or reported being unsure about the approximate range (11%-30%) of decrease in fertility. In comparing an open vs minimally invasive J-pouch procedure, 65.2% (n = 152) were not aware that minimally invasive procedures have less of an impact of female fertility than open procedures (see Supplementary Figure 2). Providers who (1) cared for a greater number of IBD patients (β = 0.05, t = 3.14, P = .002) or (2) belonged to the colorectal medical specialty (β = 0.17, t = 2.55, P = .01) were more likely to be aware of the fertility benefits of a minimally invasive procedure. Provider Level of Comfort In all, 60.1% (n = 140) of participants reported always or almost always feeling comfortable discussing the impact of J-pouch surgery with female patients. While 66.5% (n = 154) of participants always or almost always brought up the topic of fertility with female patients of reproductive age during discussions about undergoing a J-pouch procedure, 18.5% (n = 43) of health care providers reported always or almost always waiting for patients to bring up the topic of fertility first during dialogue about the procedure. As seen in Figure 1, caring for a greater number of patients with IBD was independently associated with more often feeling comfortable with discussions about the impact of the J-pouch procedure and more often bringing up these discussions with patients (β = 0.31, t = 5.73, P < 0.001). Pediatric gastroenterology providers felt less comfortable having these discussions with women of childbearing age than adult gastroenterology providers (β = -0.64, t = -3.13, P = .002). Among all health care providers, the primary reasons for discomfort included considering the topic of the surgical impact on fertility to be beyond one’s realm of knowledge or expertise (60.0%, n = 84), concern about causing patients distress (30.0%, n = 42), and the belief that these discussions are primarily the responsibility of other medical specialties to consider (23.5%, n = 33). Figure 1. Open in new tabDownload slide Responses to “How often do you feel comfortable discussing the impact of J-pouch (ileal pouch–anal anastomosis) surgery on fertility with female patients?” IBD, inflammatory bowel disease. Figure 1. Open in new tabDownload slide Responses to “How often do you feel comfortable discussing the impact of J-pouch (ileal pouch–anal anastomosis) surgery on fertility with female patients?” IBD, inflammatory bowel disease. Provider Surgical Recommendations for Female Patients Considering a J-Pouch Procedure Approximately half (52.4%, n = 122) of respondents felt that preserving fertility is always or almost always as important as treating patients’ refractory UC, and 46.33%, (n = 107) of providers reported sometimes, almost always or always recommending that women delay a J-pouch in order to preserve fertility (see Supplementary Figure 1). Caring for a greater number of patients with IBD was associated with increased likelihood of both recommending a delay in J-pouch creation in order to preserve fertility and also recommending that women receive a diverting ostomy with a rectal stump left intact (β = 0.26, t = 5.11, P < 0.001). Adult gastroenterology providers were more likely than pediatric gastroenterology providers to recommend delaying a J-pouch procedure (P < .001). Interestingly, about half (49.4%, n = 115) of participants reported sometimes, almost always, or always recommending women of reproductive age receive a diverting ostomy with a rectal stump left intact in order to preserve fertility, however, a 68.7% (n = 160) of providers reported being unsure about how long it is safe to wait prior to creating a J-pouch following the total colectomy and diverting ostomy in order to preserve sphincter function. In general, colorectal surgery providers tended to predict that longer periods of time (5+ years) are safe to wait prior to J-pouch creation than physicians and advanced care providers who work in gastroenterology (P = .031). Discussion In this study, we found significant variation among health care providers’ general knowledge about the specific types of surgical approaches for J-pouch construction, appropriate timing of J-pouch creation following a diverting ostomy, and the impact of J-pouch surgery on fertility. There are lower rates of infertility with a laparoscopic creation of a J-pouch vs an open procedure (27% vs 44%-55%), and fewer abdominal and adnexal adhesions,3-6 yet over half of all survey participants were not aware of this potential fertility benefit. In terms of the timing of J-pouch creation, there is little research regarding the ideal wait time prior to the creation of a J-pouch following a diverting ostomy with a rectal stump left intact; however, possible sphincter atrophy following an extended duration of disuse is a clinical outcome of concern.7 The highly varied results of our study are likely a reflection of this gap in the literature, with health care providers reporting acceptable wait times ranging from 1 to 20 years, and the majority reporting “I don’t know” when asked to indicate acceptable timing. Finally, in assessing more general knowledge about the overall effect of the J-pouch surgery on fertility, 34% of health care providers correctly identified the appropriate range of reduction in female fertility following a J-pouch procedure, a proportion slightly lower than a previously reported study in which 46% of gastroenterologists and 42% of colorectal surgeons correctly identified the appropriate level of fertility decrease.8 We acknowledge several limitations that should be considered with respect to our findings. Owing to a set number of Likert scale options, capturing the full range and depth of possible answers is often challenging; however, by intentionally designing our survey with multiple questions assessing each of the key themes in knowledge, comfort level, and recommendations, we were able to obtain a more complete picture of providers’ general insight of each topic. Second, owing to the low response rate among providers, particularly within the field of obstetrics and gynecology, it is possible that those who elected to respond may have greater overall interest and knowledge on this topic than those who did not. Conclusions In summary, we determined that there is significant variation in provider recommendations made for female patients of reproductive age regarding J-pouch surgery. Caring for a greater number of patients with UC was independently associated with more robust general knowledge about the J-pouch procedure, as it relates to female fertility and greater comfort in discussions with patients regarding this topic. Improving knowledge about the J-pouch among health care providers who care for smaller numbers of patients with IBD may help ensure that female patients with refractory UC are provided with complete, up-to-date information and guidance necessary to make informed personal decisions about surgical options for disease management. Future investigation exploring optimal interventions for educating health care professionals and trainees about the current evidence for potential fertility-related consequences of J-pouch surgery and the impact of improved clinical education on patient care are warranted. Author contributions S.F., R.W., and J.G. supervised the project. S.F., R.W., and T.B. designed the initial survey, with specialty expert input and editing provided by H.W., J.G., P.D., and T.M. R.W., S.F., M.K., H.W., J.G., and T.B. carried out data collection through survey distribution. T.B. and S.F. wrote the manuscript. R.W. and S.F. provided substantial editing of the manuscript. All authors edited the manuscript and approved the final draft submitted. Conflicts of Interest All authors have no relevant personal or financial conflicts to declare. References 1. Berndtsson I , Lindholm E, Oresland T, Börjesson L. Long-term outcome after ileal pouch-anal anastomosis: function and health-related quality of life. Dis Colon Rectum. 2007 ; 50 : 1545 – 1552 . Google Scholar Crossref Search ADS PubMed WorldCat 2. Waljee A , Waljee J, Morris AM, Higgins PD. Threefold increased risk of infertility: a meta-analysis of infertility after ileal pouch anal anastomosis in ulcerative colitis. Gut. 2006 ; 55 : 1575 – 1580 . Google Scholar Crossref Search ADS PubMed WorldCat 3. Bartels SA , DʼHoore A, Cuesta MA, et al. . Significantly increased pregnancy rates after laparoscopic restorative proctocolectomy: a cross-sectional study. Ann Surg. 2012 ; 256 : 1045 – 1048 . Google Scholar Crossref Search ADS PubMed WorldCat 4. Fleming FJ , Francone TD, Kim MJ, et al. . A laparoscopic approach does reduce short-term complications in patients undergoing ileal pouch-anal anastomosis. Dis Colon Rectum. 2011 ; 54 : 176 – 182 . Google Scholar Crossref Search ADS PubMed WorldCat 5. Hull TL , Joyce MR, Geisler DP, Coffey JC. Adhesions after laparoscopic and open ileal pouch-anal anastomosis surgery for ulcerative colitis. Br J Surg. 2012 ; 99 : 270 – 275 . Google Scholar Crossref Search ADS PubMed WorldCat 6. Beyer-Berjot L , Maggiori L, Birnbaum D, et al. . A total laparoscopic approach reduces the infertility rate after ileal pouch-anal anastomosis: a 2-center study. Ann Surg . 2013 ; 258 ; 275 – 282 . Google Scholar Crossref Search ADS PubMed WorldCat 7. Remzi FH , Fazio VW, Gorgun E, et al. . The outcome after restorative proctocolectomy with or without defunctioning ileostomy. Dis Colon Rectum. 2006 ; 49 : 470 – 477 . Google Scholar Crossref Search ADS PubMed WorldCat 8. Bradford K , Melmed GY, Fleshner P, et al. . Significant variation in recommendation of care for women of reproductive age with ulcerative colitis postileal pouch-anal anastomosis. Dig Dis Sci. 2014 ; 59 : 1115 – 1120 . Google Scholar Crossref Search ADS PubMed WorldCat © The Author(s) 2022. Published by Oxford University Press on behalf of Crohn’s & Colitis Foundation. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com This article is published and distributed under the terms of the Oxford University Press, Standard Journals Publication Model (https://academic.oup.com/journals/pages/open_access/funder_policies/chorus/standard_publication_model) TI - Provider Knowledge and Recommendations Regarding Ileoanal Pouch Surgery and Fertility in Women with Ulcerative Colitis JF - Inflammatory Bowel Diseases DO - 10.1093/ibd/izac004 DA - 2022-02-15 UR - https://www.deepdyve.com/lp/oxford-university-press/provider-knowledge-and-recommendations-regarding-ileoanal-pouch-1fgkfJxt5j SP - 1454 EP - 1457 VL - 28 IS - 9 DP - DeepDyve ER -