Saigal S, Feeny D, Rosenbaum P, Furlong W, Burrows E, Stoskopf B
Department of Pediatrics, McMaster University, Hamilton, Ontario, Canada.
JAMA. 1996 Aug 14;276(6):453-9.
To estimate and to compare the self-assessed health status and health-related quality of life of extremely low-birth-weight (ELBW) and control infants during adolescence.
Prospective, observational study of an inception cohort with a concurrent control group.
Geographically defined region in central-west Ontario.
We interviewed 141 (83 percent) of 169 ELBW survivors born between 1977 and 1982 and 124 (86 percent) of 145 controls aged between 12 and 16 years. In addition, proxy responses obtained from parents were used for 9 severely impaired teenagers.
Assessments of health status (6 attributes), measured with the Health Utilities Index Mark 2 classification system, and health-related quality of life (utilities), quantified with 2 preference measurement techniques, were used to quantify each participants self-reported, subjectively defined health state and 4 preselected hypothetical health states.
Adolescents who were ELBW infants reported a higher number of attributes affected, as well as more complex and severe limitations in cognition, sensation, self-care, and pain, compared with controls. Statistically significant differences for the teenagers' health-related quality of life were noted between ELBW and control teenagers in the mean utility scores (0.87 +/- 0.26 vs 0.93 +/- 0.11; P=.02 on a conventional scale where O=dead and 1.00=perfect health). However, a similar percentage of ELBW and control teenagers (71 percent vs 73 percent) gave utility ratings of more than 0.95 for their health status.
Direct measures of self-reported health status and utility scores indicated that, as a cohort, adolescents who were ELBW infants suffer from a greater burden of morbidity and rate their health-related quality of life as significantly lower than control teenagers. Nevertheless, the vast majority of ELBW respondents view their health-related quality of life as quite satisfactory and are difficult to distinguish from controls.
评估并比较极低出生体重（ELBW）婴儿和对照婴儿在青春期的自我评估健康状况及与健康相关的生活质量。
对一个起始队列进行前瞻性观察研究，并设立同期对照组。
安大略省中西部的地理界定区域。
我们对1977年至1982年间出生的169名ELBW存活者中的141名（83%）以及145名年龄在12至16岁的对照者中的124名（86%）进行了访谈。此外，还采用了从父母处获得的代理答复，涉及9名严重受损的青少年。
使用健康效用指数Mark 2分类系统测量健康状况（6个属性），并采用2种偏好测量技术对与健康相关的生活质量（效用）进行量化，以量化每位参与者自我报告的、主观界定的健康状态以及4种预先选定的假设健康状态。
与对照组相比，曾是ELBW婴儿的青少年报告受影响的属性数量更多，在认知、感觉、自我护理和疼痛方面存在更复杂、更严重的限制。在平均效用得分方面，ELBW青少年和对照青少年在与健康相关的生活质量上存在统计学显著差异（0.87±0.26 vs 0.93±0.11；在传统量表上，O代表死亡，1.代表完美健康，P = 0.02）。然而，ELBW青少年和对照青少年中对自身健康状况给予效用评分超过0.95的比例相似（71%对73%）。
自我报告的健康状况和效用得分的直接测量表明，作为一个队列，曾是ELBW婴儿的青少年所承受的发病负担更大，他们对与健康相关的生活质量的评分显著低于对照青少年。尽管如此，绝大多数ELBW受访者认为他们与健康相关的生活质量相当令人满意，且难以与对照组区分开来。
