A cross-sectional study of sexual function and fertility status in adults with congenital genitourinary abnormalities in a US tertiary care centre

INTRODUCTION: We aimed to evaluate sexual function, sexual knowledge, and fertility status in adult patients with congenital genitourinary abnormalities (CGUA).

METHODS: Adult patients with CGUA who were referred to a single transitional urology clinic between 2014 and 2017 were prospectively recruited to participate in the study. Questionnaires about general demographics, bowel and bladder continence, fertility, and sexuality were gathered. Validated questionnaires, including the Sexual Health Inventory for Men (SHIM) and Brief Index of Sexual Functioning for Women (BISF-W), were also collected.

RESULTS: A total of 167 adults with CGUA were referred to our clinic within the defined time frame. Sixty patients (25 males, 35 females) with a mean age of 25.4 years (range 18-75) met inclusion criteria and responded to questionnaires pertaining to sexuality and fertility. Forty-five (75%) responded to the fertility questionnaire; 26 (58%) had never heard of assisted reproductive technologies and only one had received prior fertility counselling. Fifty-eight participants (97%) responded to the sexuality questionnaire; 21 (36%) reported a history of sexual activity, with 12 (21%) being currently sexually active. Twenty (34%) wanted to learn more about sexuality and/or fertility. The SHIM response rate was 44%, and only three females (9%) completed the BISF-W in its entirety.

CONCLUSIONS: Adults with CGUA desire more sexuality and fertility education, yet they are uncomfortable completing current questionnaires. Our sexuality and fertility questionnaires are too challenging for this patient population to complete despite assistance. Thus, modifications are urgently needed. Additionally, medical providers should discuss sexual and reproductive health with these patients earlier and in more detail.