Nahata Leena, Caltabellotta Nicole M, Ball Kyle, O'Brien Sarah H, Creary Susan E
Division of Endocrinology, Department of Pediatrics, Nationwide Children's Hospital, The Ohio State University College of Medicine, Columbus, Ohio.
Center for Biobehavioral Health, The Research Institute at Nationwide Children's Hospital, Columbus, Ohio.
Pediatr Blood Cancer. 2018 Feb;65(2). doi: 10.1002/pbc.26829. Epub 2017 Sep 25.
BACKGROUND/OBJECTIVE: Sickle cell disease (SCD) and hydroxyurea have implications for fertility and reproductive health. The goal of this study was to examine desire for parenthood and reproductive health knowledge among a cohort of adolescent and young adult (AYA) with SCD receiving hydroxyurea and their caregivers at a large pediatric academic center.
Patients with SCD were approached from September 2016 to July 2017 if they were: (1) 12-20 years old, (2) prescribed hydroxyurea for at least 6 months, (3) proficient in English, and (4) accompanied by a caregiver who was proficient in English and willing to participate. Participants self-reported sociodemographic characteristics and completed surveys to assess their/their child's desire for parenthood and other life goals, and reproductive health knowledge.
Eighteen patient-caregiver dyads completed the study (78.3% of those eligible); 61.1% indicated that they wanted to have future biological children. Few participants reported receiving information about fertility (16.7% of AYA and 27.8% of caregivers) or birth control (11.1% of AYA and 22.2% of caregivers) from their/their child's health care provider, and the majority had received no information on these topics. Less than half of participants reported that SCD (22.2% of AYA and 50.0% of caregivers) or hydroxyurea (11.1% of AYA and 27.8% of parents) could potentially impair fertility.
Biological parenthood was important to this cohort yet fertility and reproductive health knowledge was low, suggesting that clinicians should prioritize conversations about infertility risk and birth control options with AYA with SCD on hydroxyurea and their caregivers. More research is needed to identify optimal approaches to these discussions.
背景/目的：镰状细胞病（SCD）和羟基脲对生育能力和生殖健康有影响。本研究的目的是在一家大型儿科学术中心，调查一组接受羟基脲治疗的青少年和青年成人（AYA）镰状细胞病患者及其照顾者对生育的渴望和生殖健康知识。
2016年9月至2017年7月期间，符合以下条件的SCD患者被纳入研究：（1）年龄在12 - 20岁之间；（2）服用羟基脲至少6个月；（3）精通英语；（4）有一位精通英语且愿意参与的照顾者陪同。参与者自行报告社会人口学特征，并完成调查问卷，以评估他们自己或其子女对生育及其他生活目标的渴望，以及生殖健康知识。
18对患者 - 照顾者二元组完成了研究（占 eligible人数的78.3%）；61.1%的人表示他们希望未来生育亲生孩子。很少有参与者报告从他们自己或其子女的医疗保健提供者那里获得过有关生育（AYA中占16.7%，照顾者中占27.8%）或节育（AYA中占11.1%，照顾者中占22.2%）的信息，大多数人没有收到过关于这些主题的信息。不到一半的参与者报告说SCD（AYA中占22.2%，照顾者中占50.0%）或羟基脲（AYA中占11.1%，父母中占27.8%）可能会损害生育能力。
生育亲生孩子对这组人群很重要，但生育和生殖健康知识水平较低，这表明临床医生应优先与接受羟基脲治疗的AYA镰状细胞病患者及其照顾者讨论不孕风险和节育选择。需要更多研究来确定这些讨论的最佳方法。
