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Small bowel and nutrition
Original research
Experience and opinions relating to pregnancy in patients with chronic intestinal failure: an international survey
  1. Ashley Bond1,2,
  2. Philip Allan3,
  3. Thomas Edward Conley1,
  4. Kirstine Farrer1,
  5. Lucy Mackillop4,
  6. Federico Bozzetti5,
  7. Cristina Cuerda6,
  8. Palle Jeppesen7,
  9. Francisca Joly8,
  10. Georg Lamprecht9,
  11. Manpreet Mundi10,
  12. Kinga Szczepanek11,
  13. Andre Van Gossum12,
  14. Geert Wanten13,
  15. Loris Pironi14,
  16. Simon Lal1,2
  1. 1 Intestinal Failure, Salford Royal NHS Foundation Trust, Salford, UK
  2. 2 School of Medical Sciences, University of Manchester, Manchester, UK
  3. 3 Translational Gastroenterology Unit, University of Oxford, Oxford, UK
  4. 4 Obstetrics and Gynaecology, Oxford University Hospitals NHS Foundation Trust, Oxford, UK
  5. 5 University of Milan, Milano, Lombardia, Italy
  6. 6 Universidad Complutense de Madrid, Madrid, Spain
  7. 7 Department of Intestinal Failure and Liver Diseases, Rigshospitalet, Kobenhavn, Denmark
  8. 8 MICI et Assistance Nutritive, Clichy, France
  9. 9 Gastroenterology and Endocrinology, Rostock University Medical Center, Rostock, Mecklenburg-Vorpommern, Germany
  10. 10 Division of Endocrinology, Mayo Clinic, Rochester, Minnesota, USA
  11. 11 Multi-Disciplinary Hospital named after Stanley Dudrick in Skawina, Skawina, Poland
  12. 12 Erasme Hospital, Anderlecht, Belgium
  13. 13 Radboud Universiteit, Nijmegen, Gelderland, The Netherlands
  14. 14 Internal Medicine and Gastroenterology, University of Bologna, Bologna, Italy
  1. Correspondence to Dr Ashley Bond, Intestinal Failure, Salford Royal NHS Foundation Trust, Salford, UK; ashleybond{at}doctors.org.uk

Abstract

Introduction Pregnancy in patients with chronic intestinal failure (CIF) is a relatively rare occurrence but is an important contemporary topic given both the increasing use of home parenteral nutrition (HPN) and the demographics of patients with CIF.

Method An opinion-based survey was produced in a multidisciplinary manner, which was then distributed internationally, via the European Society for Clinical Nutrition and Metabolism network, using a web-based survey tool for healthcare professionals with a specialist interest in the management of CIF.

Results Seventy specialists from 11 countries completed the survey. Fifty-four per cent of the respondents reported some experience of managing pregnancy in patients with CIF. However, 60% stated that they did not feel that it was their role to discuss the topic of pregnancy with their patients, with fewer than 10% stating that they routinely did so. Respondents felt that an individualised approach was required when considering alterations to parenteral support prior to conception, during pregnancy and in the postnatal period. Most respondents also felt there was no increased risk of catheter-related blood stream infections, while catheter-related thrombosis was deemed to be the most significant HPN-related complication for pregnant women.

Conclusion This study reports a variable experience, knowledge and confidence of healthcare professionals when considering pregnancy in patients with CIF. The risk of HPN-related complication was felt to be greater during pregnancy, with an individualised approach being the preferred route for most aspects of care. The findings support the need for an international registry and subsequent consensus guidelines for the management of pregnancy in CIF.

  • INTESTINAL FAILURE
  • PARENTERAL NUTRITION

Data availability statement

Data are available upon reasonable request.

https://doi.org/10.1136/flgastro-2023-102384

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    Data availability statement

    Data are available upon reasonable request.

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    Footnotes

    • Twitter @drthomasconley

    • Contributors AB, SL, PA, KF, LM contributed to conceptualisation. AB, SL, PA, KF contributed to methodology. AB, SL contributed to software. AB and SL contributed to formal analysis. AB contributed to data curation. AB, LP, SL, PA contributed to writing–original draft preparation. AB, PA, TEC, KF, LM, FB, CC, PJ, FJ, GL, MM, KS, AVG, GW, LP, SL contributed to writing–review & editing. SL contributed to supervision. AB contributed to project administration and is the guarantor.

    • Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.

    • Competing interests None declared.

    • Provenance and peer review Not commissioned; externally peer reviewed.

    • Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.