Jao Jennifer, Hazra Rohan, Mellins Claude A, Remien Robert H, Abrams Elaine J
Department of Medicine, Icahn School of Medicine at Mount Sinai, New York, NY, USA.
Department of Obstetrics, Gynecology and Reproductive Science, Icahn School of Medicine at Mount Sinai, New York, NY, USA;
J Int AIDS Soc. 2016 Oct 13;19(1):21099. doi: 10.7448/IAS.19.1.21099. eCollection 2016.
The tremendous success of antiretroviral therapy has resulted in a diminishing population of perinatally HIV-infected children on the one hand and a mounting number of HIV-exposed uninfected (HEU) children on the other. As the oldest of these HEU children are reaching adolescence, questions have emerged surrounding the implications of HEU status disclosure to these adolescents. This article outlines the arguments for and against disclosure of a child's HEU status.
Disclosure of a child's HEU status, by definition, requires disclosure of maternal HIV status. It is necessary to weigh the benefits and harms which could occur with disclosure in each of the following domains: psychosocial impact, long-term physical health of the HEU individual and the public health impact. Does disclosure improve or worsen the psychological health of the HEU individual and extended family unit? Do present data on the long-term safety of HIV/ARV exposure reveal potential health risks which merit disclosure to the HEU adolescent? What research and public health programmes or systems need to be in place to afford monitoring of HEU individuals and which, if any, of these require disclosure?
At present, it is not clear that there is sufficient evidence on whether long-term adverse effects are associated with HIV/ARV exposures, making it difficult to mandate universal disclosure. However, as more countries adopt electronic medical record systems, the HEU status of an individual should be an important piece of the health record which follows the infant not only through childhood and adolescence but also adulthood. Clinicians and researchers should continue to approach the dialogue around mother-child disclosure with sensitivity and a cogent consideration of the evolving risks and benefits as new information becomes available while also working to maintain documentation of an individual's perinatal HIV/ARV exposures as a vital part of his/her medical records. As more long-term adult safety data on HIV/ARV exposures become available these decisions may become clearer, but at this time, they remain complex and multi-faceted.
抗逆转录病毒疗法取得了巨大成功,一方面,围产期感染艾滋病毒的儿童数量在减少,另一方面,暴露于艾滋病毒但未受感染(HEU)的儿童数量却在增加。随着这些HEU儿童中年龄最大的一批步入青春期,围绕向这些青少年披露其HEU身份的影响出现了一些问题。本文概述了支持和反对披露儿童HEU身份的观点。
披露儿童的HEU身份,从定义上讲,需要披露母亲的艾滋病毒感染状况。有必要权衡在以下每个领域披露可能带来的利弊:心理社会影响、HEU个体的长期身体健康以及公共卫生影响。披露会改善还是恶化HEU个体及其大家庭的心理健康?目前关于艾滋病毒/抗逆转录病毒药物暴露的长期安全性的数据是否揭示了值得向HEU青少年披露的潜在健康风险?需要建立哪些研究和公共卫生项目或系统来对HEU个体进行监测,其中哪些(如果有的话)需要披露?
目前,尚不清楚是否有足够的证据表明长期不良反应与艾滋病毒/抗逆转录病毒药物暴露有关,这使得强制普遍披露变得困难。然而,随着越来越多的国家采用电子病历系统,个人的HEU身份应该成为健康记录的重要组成部分,该记录不仅要伴随婴儿度过童年和青春期,还要持续到成年期。临床医生和研究人员应继续以敏感的态度开展有关母婴披露的对话,并在有新信息可用时切实考虑不断变化的风险和益处,同时努力将个人围产期艾滋病毒/抗逆转录病毒药物暴露的记录作为其医疗记录的重要组成部分予以保存。随着更多关于艾滋病毒/抗逆转录病毒药物暴露的成人长期安全性数据的出现,这些决策可能会变得更加清晰,但目前,它们仍然复杂且涉及多方面。