P256 Relationship and sexuality in Inflammatory Bowel Disease: results from a patient questionnaire

Abstract

Abstract Background Health-related quality of life has been studied for almost 30 years in patients with Inflammatory Bowel Disease (IBD). However, the knowledge concerning consequences of illness like fatigue, psychological illness, and relationship and sexuality is still sparse. The aim of this study was to gather more information about the IBD patient´s view concerning relationship and sexuality and how patients experience the support and help from the healthcare professionals. Methods A questionnaire was sent digitally to all members with an IBD diagnosis in the Swedish patient association. The questionnaire contained seven questions. Four of them concerned background data (age, gender, diagnosis, IBD-surgery). The final three questions concerned relationships and sexuality and were qualitatively analyzed with content analysis. Results Out of 2274 patients who received the questionnaire, a total of 556 answered (24%). The median age was 55 years of age, 69% were women, 46% had ulcerative colitis, 45% Crohn´s disease, 6% microscopic colitis, and 3% had a mixed form. A total of 36% had undergone surgery due to IBD. Question 5: "What kind of problems have you experienced regarding relationships and sexuality?" A total of 78% stated some kind of problem. The most common physical problems were pain (14%), incontinence/urgency (11%), and gas/bloating (9%). The most frequent psychological problems were fear of leakage (13%), decreased sexual drive (11%), and loss of energy (8%). Several patients described that their sexual life always needed to be carefully planned, and some described that they avoided having a partner because of difficulties to initiate relationships. Question 6: "What kind of help and support from the healthcare do you want?" A total of 64% wished that healthcare professionals raised questions concerning relationships and sexuality as an equal natural part as the rest of health status. Question 7: "Have you spontaneously raised questions concerning relationships and sexuality in your contacts with healthcare professionals?" A total of 84% answered no. Reasons stated were that it was felt uncomfortable, embarrassing, due to lack of time and that other concerns were prioritized. Some patients expressed that they had no contact with their healthcare center at all. Conclusion A total of 78% of the patients answering this questionnaire acknowledged that they experienced physical issues and fears concerning relationships and sexuality, mostly due to pain and leakage. A more active support was wanted from 64% of the patients, but only 14% had themselves raised the topic to health care professionals. More knowledge and awareness concerning relationships and sexuality are needed to ensure person-centered care for all IBD-patients.