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

IF 2.3 3区 医学 Q1 PEDIATRICS
Hande Yuce Ozdemir, Sezcan Mumusoglu, Ali Fuat Kalyoncu, Ebru Damadoglu
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Abstract

Introduction: 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.

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

Results: 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).

Conclusions: 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.

土耳其囊性纤维化患者生殖健康的知识、态度和行为
生殖健康(RH)已成为越来越重要的人口与成人囊性纤维化(CF)。我们的目的是调查成年CF患者关于RH的知识、态度和行为。方法:在这项前瞻性观察性研究中,年龄≥18岁的参与者在门诊就诊,与同一名呼吸内科医生面对面完成RH问卷。结果:共纳入100例患者(男/女:54/46),中位年龄22岁(IQR = 19-27)。患者中有伴侣15例(15%),单身84例(84%),离婚1例(1%)。6人(6%)有孩子。在计划生育的40名患者中,34名(85%)打算接受遗传咨询。所有患者性生活活跃;但90例(90%)未采取任何避孕措施。38名(82.6%)女性获得了抗勒氏激素(AMH)水平,而只有7名(13%)男性同意进行精子造影,17名(31.5%)男性进行了阴囊超声检查。大约68.5%的男性参与者没有意识到或误解了他们的不育风险。CF中RH的信息来源不影响不孕的关注水平(p = 0.002)。然而,相信他们对疾病和不孕症之间关系的了解足够,确实影响了他们的关注程度(p = 0.007)。结论:研究结果强调CF患者对RH的准确认识不足。超过一半接受精子分析的男性患者不愿与医疗服务提供者分享他们的结果。这一发现是惊人的,因为已知95%以上的男性CF患者由于输精管异常而不育。我们的研究结果表明,成年CF患者的随访主要集中在呼吸系统和其他严重受影响的器官,而RH仍然有些被忽视。这很重要,因为它突出了患者对该主题的知识不足。
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来源期刊
Pediatric Pulmonology
Pediatric Pulmonology 医学-呼吸系统
CiteScore
6.00
自引率
12.90%
发文量
468
审稿时长
3-8 weeks
期刊介绍: Pediatric Pulmonology (PPUL) is the foremost global journal studying the respiratory system in disease and in health as it develops from intrauterine life though adolescence to adulthood. Combining explicit and informative analysis of clinical as well as basic scientific research, PPUL provides a look at the many facets of respiratory system disorders in infants and children, ranging from pathological anatomy, developmental issues, and pathophysiology to infectious disease, asthma, cystic fibrosis, and airborne toxins. Focused attention is given to the reporting of diagnostic and therapeutic methods for neonates, preschool children, and adolescents, the enduring effects of childhood respiratory diseases, and newly described infectious diseases. PPUL concentrates on subject matters of crucial interest to specialists preparing for the Pediatric Subspecialty Examinations in the United States and other countries. With its attentive coverage and extensive clinical data, this journal is a principle source for pediatricians in practice and in training and a must have for all pediatric pulmonologists.
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