Harrison David J, Prada Francisco, Nokoff Natalie J, Iwamoto Sean J, Pastor Tony, Jacobsen Roni M, Yeung Elizabeth
Colorado Adult and Teen Congenital Heart (C.A.T.C.H.) Program University of Colorado School of Medicine, UCHealth Hospital System and Children's Hospital Colorado Aurora CO USA.
Division of Adolescent Medicine Children's Hospital Colorado Aurora CO USA.
J Am Heart Assoc. 2024 Feb 6;13(3):e031004. doi: 10.1161/JAHA.123.031004. Epub 2024 Jan 31.
Transgender and gender diverse (TGD) individuals and long-term survivors with adult congenital heart disease (ACHD) are both growing populations with specialized needs. No studies assess temporal trends or evaluate the care of TGD individuals with ACHD.
Meetings between congenital cardiology and gender-affirming care specialists identified unique considerations in TGD individuals with ACHD. A retrospective chart review was then performed to describe patient factors and outpatient trends in those with an ACHD diagnosis undergoing gender-affirming hormonal or surgical care (GAHT/S) at 1 adult and 1 pediatric tertiary care center. Thirty-three TGD individuals with ACHD were identified, 21 with a history of GAHT/S. Fourteen (66%) had moderate or complex ACHD, 8 (38%) identified as transgender male, 9 (43%) transgender female, and 4 (19%) other gender identities. Three had undergone gender-affirming surgery. There were zero occurrences of the composite end point of unplanned hospitalization or thrombotic event over 71.1 person-years of gender-affirming care. Median age at first gender-affirming appointment was 16.8 years [interquartile range 14.8-21.5]. The most common treatment modification was changing estradiol administration from oral to transdermal to reduce thrombotic risk (n=3). An increasing trend was observed from zero TGD patients with ACHD attending a gender diversity appointment in 2012 to 14 patients in 2022.
There is a growing population of TGD patients with ACHD and unique medical and psychosocial needs. Future studies must fully evaluate the reassuring safety profile observed in this small cohort. We share 10 actionable care considerations for providers with a goal of overseeing a safe and fulfilling gender transition across all TGD patients with ACHD.
跨性别者和性别多样化(TGD)个体以及患有成人先天性心脏病(ACHD)的长期幸存者都是有特殊需求的不断增长的群体。尚无研究评估TGD合并ACHD个体的时间趋势或评估其护理情况。
先天性心脏病专家与性别肯定护理专家之间的会议确定了TGD合并ACHD个体的独特注意事项。然后进行了一项回顾性图表审查,以描述在1家成人和1家儿科三级护理中心接受性别肯定激素或手术治疗(GAHT/S)的ACHD诊断患者的患者因素和门诊趋势。确定了33例TGD合并ACHD个体,其中21例有GAHT/S病史。14例(66%)患有中度或复杂性ACHD,8例(38%)认定为跨性别男性,9例(43%)为跨性别女性,4例(19%)为其他性别认同。3例接受了性别肯定手术。在71.1人年的性别肯定护理期间,未发生计划外住院或血栓事件的复合终点事件。首次性别肯定预约的中位年龄为16.8岁[四分位间距14.8 - 21.5]。最常见的治疗调整是将雌二醇给药方式从口服改为经皮给药以降低血栓形成风险(n = 3)。观察到从2012年零例ACHD的TGD患者参加性别多样性预约到2022年14例患者的上升趋势。
患有ACHD的TGD患者群体不断壮大,有独特的医疗和心理社会需求。未来的研究必须全面评估在这个小队列中观察到的令人放心的安全性。我们为医疗服务提供者分享10条可操作的护理注意事项,目标是监督所有患有ACHD的TGD患者实现安全且满意的性别转变。