Impact of disclosure of HIV infection on health-related quality of life among children and adolescents with HIV infection.
Impact of disclosure of HIV infection on health-related quality of life among children and adolescents with HIV infection.
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DOI：
10.1542/peds.2008-1290
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发表时间：
2009-03
期刊：
影响因子：
8
通讯作者：
Pediatric AIDS Clinical Trials Group 219C Study Team
中科院分区：
文献类型：
--
作者：
Butler AM;Williams PL;Howland LC;Storm D;Hutton N;Seage GR 3rd;Pediatric AIDS Clinical Trials Group 219C Study Team
关于艾滋病毒状况披露对生活质量的影响知之甚少，使临床医生和家庭依赖于对患有其他绝症的儿童的研究。这项工作的目的是研究艾滋病毒披露对儿科生活质量的影响，并描述在围产期感染的儿科人群中披露的年龄分布。对入组前瞻性队列研究（儿科艾滋病临床试验组219 C）的≥5岁围产期HIV感染青年进行纵向分析，在HIV暴露前后进行≥1次研究访视。在常规研究访视时，由主要照顾者完成特定于患者的生活质量工具。汇总了披露时的年龄分布情况。六个生活质量领域进行了评估，包括一般健康感知，症状困扰，心理状态，卫生保健利用，身体功能，社会/角色功能。对于每个领域，混合效应模型适合估计披露对生活质量的影响。共分析了395名儿童的2423次研究访视（1317次披露前访视和1106次披露后访视）。披露时的中位年龄估计为11岁。披露时年龄较大与出生年份较早有关。除一般健康感知外，末次未公开访视与首次公开访视的平均领域评分无显著差异。当所有的访问被认为是，5的6个平均域得分较低后披露，虽然差异不显着。在混合效应模型中，披露对任何领域的生活质量都没有显着影响。披露时的年龄随着时间的推移显著下降。披露前和披露后的生活质量之间没有统计学显著差异，因此，应鼓励在适当的时候披露。
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. 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. 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. 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. 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.
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DOI：
10.1016/s0891-5245(00)33836-6
发表时间：
2000-09-01
期刊：
Journal of pediatric health care : official publication of National Association of Pediatric Nurse Associates & Practitioners
影响因子：
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作者：
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通讯作者：
Instone, S L
影响因子：
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作者：
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DOI：
10.1016/j.jana.2006.11.008
发表时间：
2007-01-01
影响因子：
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作者：
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影响因子：
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de Martino, M;Tovo, PA;Pezzotti, P
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Pezzotti, P