Knowledge, Attitudes, and Behaviors of Cystic Fibrosis Patients on Reproductive Health in Turkiye

Reproductive health (RH) has become increasingly significant with the growing population of adults with cystic fibrosis (CF). We aimed to investigate the knowledge, attitudes, and behaviors of adult CF patients regarding RH.

In this prospective observational study, participants aged ≥ 18 attending an outpatient clinic completed a RH questionnaire face-to-face with the same respiratory physician.

A total of 100 patients were included in the study (men/women: 54/46), with a median age of 22 years (IQR = 19-27). Among the patients 15 (15%) had a partner, 84 (84%) were single, and 1 (1%) was divorced. Six (6%) had children. Of the 40 patients who planned to have a child, 34 (85%) intended to receive genetic counseling. All patients were sexually active; however, 90 (90%) did not use any contraception method. Anti-Müllerian hormone (AMH) levels were obtained from 38 (82.6%) females, while only 7 (13%) males agreed to perform a spermiogram, 17 (31.5%) males had a scrotal ultrasound. Approximately 68.5% of the male participants were unaware of or misunderstood their infertility risk. The source of information about RH in CF did not affect the level of concern about infertility (p = 0.002). However, believing that their knowledge about the relationship between the disease and infertility was sufficient did affect their level of concern (p = 0.007).

The findings highlight that accurate knowledge about RH is insufficient among CF patients. More than half of the male patients who underwent sperm analysis did not want to share their results with healthcare providers. This finding is striking because more than 95% of male CF patients are known to be infertile due to vas deferens abnormalities. Our findings suggest that the follow-up of adult CF patients primarily focuses on the respiratory system and other severely affected organs, while RH remains somewhat overlooked. This is significant as it highlights the patients' insufficient knowledge on the topic.