N01 Sexuality and IBD. Does it need to be talked about in IBD centres? Results of an anonymous survey at IBD-Patients, -Nurses und -Physicians (MD) in Germany (IBD-INTIM!)
P Hartmann, J Zemke, T Fischer, S Knaus, H Dukwen, K Otto,Abstract
Background
Sexuality in Inflammatory bowel disease (IBD) is often a tabu topic. But do patients want to talk about it at all? How familiar are IBD Nurses and MD with this topic, will this routinely be addressed to IBD-patients during their consultations? This study attempted to determine the need for information and the willingness to talk about sexuality among patients, IBD nurses and MDs. The survey was carried out in an outpatient setting in Germany.
Methods
Each participant completed an anonymous questionnaire, limited to 2 MDs, 2 IBD nurses, 5 patients per site, in order to optain a broad opinion across Germany. All participants received an information sheet about the survey in advance. The completed questionnaire was sent to the evaluators in a sealed envelope. It was possible to complete the questions electronically, but this option was rarely used. Patients were selected randomly without taking into account the extent, duration and severity of the disease or the actual drug therapy.
Results
53 MD, 60 IBD nurses and 144 patients (Figure 1) in 39 sites answered the survey. Over half of patients in our cohort don't want to talk about sex if asked (52%). Out of those 48% who want to talk about the topic, do 62% not care who addresses that topic, 24% prefer the IBD nurse and 15% a MD. 93% of patients were never addressed to the topic in their IBD Centre. There was no connection between the wish to talk about sex and age (r = -.06, p = .460) nor between age groups (χ² (3)=0.81, p = .848) or between Crohn's disease (CD) and ulcerative colitis (UC) (χ² (1)=0.29, p = .588). The quality of sexual life does not necessarily appear to be affected, as average values are always relatively high and symptoms are low (Table 1). Nurses and MDs have sufficient knowledge about IBD and Sexuality: Nurses M=3.17/6 (SD = 1.13), MD M=3.44/6 (SD = 0.96). There is a significant connection between shame and knowledge (r = -.30, p = .023), meaning more knowledge, less shame and vice versa. 83% of MD, 90% of IBD Nurses would like (more) information material, most frequently print media (71% of MD) or guideline (83% of Nurses) to pass on to patients or self-training.
Conclusion
The quality of sexual life does not necessarily appear to be affected in our cohort. Sexuality beyond pregnancy and the desire to have children does not appear to be a major issue for IBD patients, 52% do not want to talk about it, even when the topic comes up during their consultations. There was no correlation between the desire to talk about sexuality based on gender, age, different age groups, or CD or UC. Further research with focus on individual aspects is necessary in order to be able to provide good advice to patients who want information.
References
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