披露艾滋病毒感染情况对感染艾滋病毒的儿童和青少年健康相关生活质量的影响。
Impact of disclosure of HIV infection on health-related quality of life among children and adolescents with HIV infection.
作者信息
Butler Anne M, Williams Paige L, Howland Lois C, Storm Deborah, Hutton Nancy, Seage George R
机构信息
Washington University School of Medicine, Division of Infectious Diseases, Box 8051, 660 S Euclid Ave, St Louis, MO 63110, USA.
出版信息
Pediatrics. 2009 Mar;123(3):935-43. doi: 10.1542/peds.2008-1290.
BACKGROUND
Little is known concerning the impact of HIV status disclosure on quality of life, leaving clinicians and families to rely on research of children with other terminal illnesses.
OBJECTIVES
The purpose of this work was to examine the impact of HIV disclosure on pediatric quality of life and to describe the distribution of age at disclosure in a perinatally infected pediatric population. METHODS. A longitudinal analysis was conducted of perinatally HIV-infected youth >/=5 years of age enrolled in a prospective cohort study, Pediatric AIDS Clinical Trials Group 219C, with >/=1 study visit before and after HIV disclosure. Age-specific quality-of-life instruments were completed by primary caregivers at routine study visits. The distribution of age at disclosure was summarized. Six quality-of-life domains were assessed, including general health perception, symptom distress, psychological status, health care utilization, physical functioning, and social/role functioning. For each domain, mixed-effects models were fit to estimate the effect of disclosure on quality of life.
RESULTS
A total of 395 children with 2423 study visits were analyzed (1317 predisclosure visits and 1106 postdisclosure visits). The median age at disclosure was estimated to be 11 years. Older age at disclosure was associated with earlier year of birth. Mean domain scores were not significantly different at the last undisclosed visit compared with the first disclosed visit, with the exception of general health perception. When all of the visits were considered, 5 of 6 mean domain scores were lower after disclosure, although the differences were not significant. In mixed-effects models, disclosure did not significantly impact quality of life for any domain.
CONCLUSIONS
Age at disclosure decreased significantly over time. There were no statistically significant differences between predisclosure and postdisclosure quality of life; therefore, disclosure should be encouraged at an appropriate time.
背景
关于披露艾滋病毒感染状况对生活质量的影响，人们了解甚少，这使得临床医生和家庭只能依赖对患有其他绝症儿童的研究。
目的
本研究旨在探讨披露艾滋病毒感染状况对儿童生活质量的影响，并描述围产期感染艾滋病毒的儿童群体中披露感染状况时的年龄分布。方法：对参加前瞻性队列研究“儿童艾滋病临床试验组219C”的5岁及以上围产期感染艾滋病毒的青少年进行纵向分析，这些青少年在披露艾滋病毒感染状况前后至少有1次研究访视。在常规研究访视时，由主要照顾者完成特定年龄的生活质量评估工具。总结披露感染状况时的年龄分布情况。评估了六个生活质量领域，包括总体健康感知、症状困扰、心理状态、医疗保健利用、身体功能和社会/角色功能。对于每个领域，采用混合效应模型来估计披露感染状况对生活质量的影响。
结果
共分析了395名儿童的2423次研究访视（披露前访视1317次，披露后访视1106次）。估计披露感染状况时的中位年龄为11岁。披露感染状况时年龄较大与出生年份较早相关。除总体健康感知外，在最后一次未披露访视时与首次披露访视时，各领域平均得分无显著差异。当考虑所有访视时，披露感染状况后6个平均领域得分中有5个较低，尽管差异不显著。在混合效应模型中，披露感染状况对任何领域的生活质量均无显著影响。
结论
随着时间推移，披露感染状况时的年龄显著降低。披露感染状况前后的生活质量在统计学上无显著差异；因此，应鼓励在适当时间进行披露。
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