Desire for parenthood and reproductive health knowledge in adolescents and young adults with sickle cell disease and their caregivers
Desire for parenthood and reproductive health knowledge in adolescents and young adults with sickle cell disease and their caregivers
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DOI：
10.1002/pbc.26829
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发表时间：
2018-02-01
影响因子：
3.2
通讯作者：
Creary, Susan E.
中科院分区：
文献类型：
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作者：
Nahata, Leena;Caltabellotta, Nicole M.;Creary, Susan E.
背景/目的镰状细胞病(SCD)和羟基尿素对生育和生殖健康有影响。本研究的目的是调查在大型儿科学术中心接受羟基脲治疗的一群青少年和青壮年(Aya)患者及其照顾者的育儿意愿和生殖健康知识。方法2016年9月至2017年7月，对符合以下条件的SCD患者进行询问：(1)12-20岁，(2)服用羟基尿素至少6个月，(3)精通英语，(4)由精通英语并愿意参与的照顾者陪同。参与者自我报告社会人口学特征，并完成调查，以评估他们/他们的孩子对为人父母和其他生活目标的渴望，以及生殖健康知识。结果18名患者-照顾者完成了研究(78.3%符合条件的人)；61.1%的人表示他们想要未来的亲生孩子。很少有参与者报告从其子女的保健提供者那里收到关于生育(16.7%的AYA和27.8%的照顾者)或节育(11.1%的AYA和22.2%的照顾者)的信息，大多数人没有收到关于这些主题的信息。不到一半的参与者报告SCD(22.2%的AYA和50.0%的照顾者)或羟基尿素(11.1%的AYA和27.8%的父母)可能会损害生育能力。结论生物学为人父母对这一队列很重要，但生育力和生殖健康知识很低，这表明临床医生应该优先与AYA和SCD就羟基尿素及其照顾者进行关于不孕风险和节育选择的对话。需要进行更多的研究，以确定这些讨论的最佳方法。
Background/objectiveSickle 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.MethodsPatients 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.ResultsEighteen 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.ConclusionsBiological 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.