Family planning with inflammatory bowel disease: the challenge of childlessness and parent concerns

Abstract

Background In patients with inflammatory bowel disease (IBD), diagnosis is often established at the beginning of childbearing age. Accordingly, concerns about family planning and pregnancy (FPP) are common. Poor knowledge regarding FPP might contribute to increased childlessness in patients with IBD.

Methods The Crohn’s and Colitis Pregnancy Knowledge Score (CCPKnow, 17 multiple-choice questions) was translated into German and then used for a web-based survey. Childlessness was analyzed with respect to socio-demographic and disease-related information, and the knowledge (CCPKnow) and concerns of IBD patients with children were compared to those of voluntarily childless (VC) and non-voluntarily childless (NVC) IBD patients.

Results Childlessness was observed in 57.4 % of the 533 participants (90.6 % women, 63.0 % Crohn’s disease, 31.5 % ulcerative colitis, mean age 33.2 ± 8.6 years), voluntary childlessness in 9 %. The mean overall CCPKnow was adequate (9.38 ± 3.96). Poor knowledge was not associated with increased childlessness (CCPKnow of < 8 was found in 29.8 % of patients with children and 28.9 % of childless patients, p > 0.5). Instead, the patients’ education, medical advice, FPP-related concerns, impaired body image, and sexual dysfunction had a significant impact on childlessness. Frequent concerns included adverse effects of the patient’s medication on their child (36 % of the respondents), malformation (33 %), miscarriage (34.5 %), and the inheritability of IBD (57 %).

Conclusions Factual knowledge does not reduce disease-related concerns or childlessness. Correct but possibly bothersome information on FPP might contribute to childlessness in patients with IBD. Our findings underline the need for qualified counseling of IBD patients regarding FPP by an experienced IBD physician.

Zusammenfassung

Hintergrund Die Diagnose einer chronisch-entzündlichen Darmerkrankung (CED) wird häufig zu Beginn des gebärfähigen Alters gestellt. Dementsprechend sind Bedenken hinsichtlich Familienplanung und Schwangerschaft (FPP) weit verbreitet. Mangelndes Wissen über FPP könnte zu einer erhöhten Kinderlosigkeit bei Patienten mit CED beitragen.

Methoden Der Crohn's and Colitis Pregnancy Knowledge Score (CCPKnow, 17 Multiple-Choice-Fragen) wurde ins Deutsche übersetzt und für eine webbasierte Umfrage unter Patienten mit CED verwendet. Kinderlosigkeit wurde hinsichtlich soziodemografischer und krankheitsbezogener Charakteristika analysiert, insbesondere Wissen (CCPKnow) und Sorgen der Patienten mit Kindern wurden mit Wissen und Sorgen von freiwillig und nicht-freiwilligen kinderlosen Patienten verglichen.

Ergebnisse 57,4 % der 533 Teilnehmer (90,6 % Frauen, 63,0 % Morbus Crohn, 31,5 % Colitis ulcerosa, Durchschnittsalter 33,2 ± 8,6 Jahre) waren kinderlos, freiwillige Kinderlosigkeit bestand bei 9 % der Patienten. Der mittlere CCPKnow war angemessen (Score 9,38 ± 3,96). Geringe Kenntnisse war nicht mit erhöhter Kinderlosigkeit assoziiert (CCPKnow < 8 bei Patienten mit Kindern 29,8 %, bei kinderlosen Patienten 28,9 %, p > 0,5). Stattdessen hatten Ausbildung, medizinische Beratung, FPP-bezogene Sorgen, beeinträchtigtes Körperbild und sexuelle Dysfunktion einen signifikanten Einfluss auf die Kinderlosigkeit. Zu häufigen Sorgen gehörten mögliche Nebenwirkungen der medikamentösen Therapie auf das Kind (36 % der Befragten), Missbildungen (33 %), Fehlgeburten (34,5 %) und die Erblichkeit der CED (57 %).

Schlussfolgerungen Korrektes Faktenwissen reduziert nicht notwendigerweise krankheitsbedingte Bedenken oder Kinderlosigkeit. Richtige, aber möglicherweise beunruhigende Informationen zu FPP können zur Kinderlosigkeit bei Patienten mit CED beitragen. Unsere Ergebnisse unterstreichen die Notwendigkeit einer qualifizierten Beratung zur Familienplanung durch einen in der Behandlung von CED erfahrenen Arzt.

Key words

inflammatory bowel disease - pregnancy - family planning - childlessness

Schlüsselwörter

chronisch entzündliche Darmerkrankung - Schwangerschaft - Kinderlosigkeit - Familienplanung

Publication History

Received: 24 September 2020

Accepted: 24 February 2021

Article published online:
18 March 2021

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