Sexual experiences in patients with Neurofibromatosis type 1: a cross-sectional study

Background Limited information exists regarding the impact of neurofibromatosis type 1 (NF1) on patients sexuality, despite its significance for quality of life. We therefore explored how adult patients with NF1 experienced their sexuality. Methods A cross-sectional study was conducted among adult patients with NF1. Sex life was ranked on a self-report scale ranging from 0 (very unhappy) up to 10 (very happy). Male sexual function was measured by the International Index of Erectile Function (IIEF). Female sexual function was measured by the Female Sexual Function Index (FSFI). Differences between variables were analyzed using parametric tests. Results Out of 568 patients, 294 respondents (52%) started the questionnaire, with 202/294 (69%) completing it. The mean age of respondents was 37 years (range 18-75 years) and 63% were female. Self-reported sex life was rated a 4.9 (SD3.1) for the total group. About 48% scored their sex life a ≤ 5. Men with erectile problems (67%) scored their sex life significantly lower than men without erectile problems (4.0 vs. 7.2, p<.001). Women with sexual problems (64%) on the FSFI, scored their sex life significantly lower than women without sexual problems (3.8 vs. 7.5, p<.001). Conclusion Half the respondents scored their sex life as inadequate, with about two-thirds experiencing sexual problems. This research seems important to better address sexual health in a clinical setting.