Download PDF
Am J Perinatol 2023; 40(15): 1651-1658
DOI: 10.1055/s-0041-1740193
Original Article

Patients Report Infrequent Counseling by Physicians and Inadequate Knowledge about Inflammatory Bowel Disease and Reproductive Health Issues

Aarti K. Rao
1   Department of Gastroenterology, Palo Alto Medical Foundation, Palo Alto, California
2   Division of Gastroenterology and Hepatology, Department of Medicine, Stanford University, Redwood City, California
,
Thomas A. Zikos
2   Division of Gastroenterology and Hepatology, Department of Medicine, Stanford University, Redwood City, California
,
Gotzone Garay
2   Division of Gastroenterology and Hepatology, Department of Medicine, Stanford University, Redwood City, California
,
Ko-Eun Lee
2   Division of Gastroenterology and Hepatology, Department of Medicine, Stanford University, Redwood City, California
3   Department of Internal Medicine, College of Medicine, Ewha Womans University, Seoul, South Korea
,
Sarah E. Streett
2   Division of Gastroenterology and Hepatology, Department of Medicine, Stanford University, Redwood City, California
› Author Affiliations
› Further Information
Also available at
    Permissions and Reprints

Abstract

Objective Inflammatory bowel disease (IBD) reproductive health counseling is associated with higher knowledge, lower voluntary childlessness, greater medication adherence during pregnancy, and improved outcomes of pregnancy. Our aims were to assess counseling and knowledge about IBD and reproductive health in a tertiary care IBD patient population.

Study Design We anonymously surveyed women and men ages 18 to 45 cared for at the Stanford IBD clinic about reproductive health and administered the CCPKnow questionnaire. STATA was used to summarize descriptive statistics and compare categorical variables using Fisher's exact test.

Results Of the 100 patients (54% women) who completed the survey, only 33% reported prior reproductive health counseling. Both men and women considered not having a child due to IBD (31% women, 15% men) and most (83%) had no prior counseling. A minority of patients had an adequate (≥8/17) CCPKnow score (45% women, 17% men). The majority of women with prior pregnancy had pre-existing IBD (67%), yet many did not seek gastrointestinal (GI) care (38% preconception, 25% during pregnancy) and 33% stopped/changed medications, with 40% not discussing this with a physician. Prior counseling was significantly associated with education level (p = 0.013), biologic use (p = 0.003), and an adequate CCPKnow score (p = 0.01). Overall, 67% of people wanted more information on IBD and reproductive health.

Conclusion In an educated tertiary care cohort, the majority of patients had low CCPKnow scores and rates of IBD reproductive health counseling. Many patients with IBD prior to pregnancy reported no GI care preconception or during pregnancy and stopped/changed medications without consulting a physician. There is an urgent need for proactive counseling by gastroenterologists and obstetricians on IBD and reproductive health.

Key Points

  • There is inadequate reproductive health counseling in IBD.

  • Many IBD patients do not seek prenatal/perinatal GI care.

  • Patients change medications without consultation.

  • GIs and OBs should proactively counsel IBD patients.

Keywords

inflammatory bowel disease - pregnancy - reproductive health - counseling

Ethical Approval

The study was approved by the Institutional Review Board at Stanford University.




Publication History

Received: 14 November 2020

Accepted: 04 October 2021

Article published online:
13 December 2021

© 2021. Thieme. All rights reserved.

Thieme Medical Publishers, Inc.
333 Seventh Avenue, 18th Floor, New York, NY 10001, USA

 

  • References

  • 1 Johnston RD, Logan RF. What is the peak age for onset of IBD?. Inflamm Bowel Dis 2008; 14 (Suppl. 02) S4-S5
    CrossrefPubMedGoogle Scholar
  • 2 Mountifield R, Bampton P, Prosser R, Muller K, Andrews JM. Fear and fertility in inflammatory bowel disease: a mismatch of perception and reality affects family planning decisions. Inflamm Bowel Dis 2009; 15 (05) 720-725
    CrossrefPubMedGoogle Scholar
  • 3 Selinger CP, Eaden J, Selby W. et al. Patients' knowledge of pregnancy-related issues in inflammatory bowel disease and validation of a novel assessment tool (‘CCPKnow’). Aliment Pharmacol Ther 2012; 36 (01) 57-63
    CrossrefPubMedGoogle Scholar
  • 4 Selinger CP, Eaden J, Selby W. et al. Inflammatory bowel disease and pregnancy: lack of knowledge is associated with negative views. J Crohn's Colitis 2013; 7 (06) e206-e213
    CrossrefPubMedGoogle Scholar
  • 5 Marri SR, Ahn C, Buchman AL. Voluntary childlessness is increased in women with inflammatory bowel disease. Inflamm Bowel Dis 2007; 13 (05) 591-599
    CrossrefPubMedGoogle Scholar
  • 6 Mahadevan U, Sandborn WJ, Li DK, Hakimian S, Kane S, Corley DA. Pregnancy outcomes in women with inflammatory bowel disease: a large community-based study from Northern California. Gastroenterology 2007; 133 (04) 1106-1112
    CrossrefPubMedGoogle Scholar
  • 7 Huang VW-M, Chang H-J, Kroeker KI. et al. Management of inflammatory bowel disease during pregnancy and breastfeeding varies widely: a need for further education [online]. Can J Gastroenterol Hepatol 2016; 2016: 6193275
    PubMedGoogle Scholar
  • 8 Kashkooli SB, Andrews JM, Roberts MB, Selinger CP, Leong RW. Inflammatory bowel disease-specific pregnancy knowledge of gastroenterologists against general practitioners and obstetricians. United European Gastroenterol J 2015; 3 (05) 462-470
    CrossrefPubMedGoogle Scholar
  • 9 Huang VW, Chang H-J, Kroeker KI. et al. Does the level of reproductive knowledge specific to inflammatory bowel disease predict childlessness among women with inflammatory bowel disease?. Can J Gastroenterol Hepatol 2015; 29 (02) 95-103
    CrossrefPubMedGoogle Scholar
  • 10 Selinger CP, Ghorayeb J, Madill A. What factors might drive voluntary childlessness (VC) in women with IBD? Does IBD-specific pregnancy-related knowledge matter?. J Crohn's Colitis 2016; 10 (10) 1151-1158
    CrossrefPubMedGoogle Scholar
  • 11 Sato A, Naganuma M, Asakura K. et al. Conception outcomes and opinions about pregnancy for men with inflammatory bowel disease. J Crohn's Colitis 2010; 4 (02) 183-188
    CrossrefPubMedGoogle Scholar
  • 12 Carbery I, Ghorayeb J, Madill A, Selinger CP. Pregnancy and inflammatory bowel disease: Do we provide enough patient education? A British study of 1324 women. World J Gastroenterol 2016; 22 (36) 8219-8225
    CrossrefPubMedGoogle Scholar
  • 13 Gallinger ZR, Rumman A, Nguyen GC. Perceptions and attitudes towards medication adherence during pregnancy in inflammatory bowel disease. J Crohn's Colitis 2016; 10 (08) 892-897
    CrossrefPubMedGoogle Scholar
  • 14 Ellul P, Zammita SC, Katsanos KH. et al. Perception of reproductive health in women with inflammatory bowel disease. J Crohn's Colitis 2016; 10 (08) 886-891
    CrossrefPubMedGoogle Scholar
  • 15 Bröms G, Granath F, Linder M, Stephansson O, Elmberg M, Kieler H. Birth outcomes in women with inflammatory bowel disease: effects of disease activity and drug exposure. Inflamm Bowel Dis 2014; 20 (06) 1091-1098
    CrossrefPubMedGoogle Scholar
  • 16 Tandon P, Govardhanam V, Leung K, Maxwell C, Huang V. Systematic review with meta-analysis: risk of adverse pregnancy-related outcomes in inflammatory bowel disease. Aliment Pharmacol Ther 2020; 51 (03) 320-333
    CrossrefPubMedGoogle Scholar
  • 17 Nielsen OH, Gubatan JM, Juhl CB, Streett SE, Maxwell C. Biologics for inflammatory bowel disease and their safety in pregnancy: a systematic review and meta-analysis. Clin Gastroenterol Hepatol 2022; 20 (01) 74-87.e3
    CrossrefPubMedGoogle Scholar
  • 18 de Lima A, Zelinkova Z, Mulders AG, van der Woude CJ. Preconception care reduces relapse of inflammatory bowel disease during pregnancy. Clin Gastroenterol Hepatol 2016; 14 (09) 1285-1292.e1
    CrossrefPubMedGoogle Scholar
  • 19 Mountifield R, Andrews JM, Bampton P. It IS worth the effort: patient knowledge of reproductive aspects of inflammatory bowel disease improves dramatically after a single group education session. J Crohn's Colitis 2014; 8 (08) 796-801
    CrossrefPubMedGoogle Scholar
  • 20 Gawron LM, Hammond C, Keefer L. Documentation of reproductive health counseling and contraception in women with inflammatory bowel diseases. Patient Educ Couns 2014; 94 (01) 134-137
    CrossrefPubMedGoogle Scholar
  • 21 Anderson BT, Ertle JT, Borum ML. Men with inflammatory bowel disease are rarely counseled regarding effects of immunosuppressive therapy on fertility and pregnancy. J Crohn's Colitis 2013; 7 (12) e716
    CrossrefPubMedGoogle Scholar
  • 22 Walldorf J, Brunne S, Gittinger FS, Michl P. Family planning in inflammatory bowel disease: childlessness and disease-related concerns among female patients. Eur J Gastroenterol Hepatol 2018; 30 (03) 310-315
    CrossrefPubMedGoogle Scholar
  • 23 Waljee A, Waljee J, Morris AM, Higgins PDR. Threefold increased risk of infertility: a meta-analysis of infertility after ileal pouch anal anastomosis in ulcerative colitis. Gut 2006; 55 (11) 1575-1580
    CrossrefPubMedGoogle Scholar
  • 24 Shin T, Okada H. Infertility in men with inflammatory bowel disease. World J Gastrointest Pharmacol Ther 2016; 7 (03) 361-369
    CrossrefPubMedGoogle Scholar
  • 25 Mahadevan U, Robinson C, Bernasko N. et al. Inflammatory bowel disease in pregnancy clinical care pathway: a report from the American Gastroenterological Association IBD Parenthood Project Working Group. Am J Obstet Gynecol 2019; 220 (04) 308-323
    CrossrefPubMedGoogle Scholar