Saigal S, Stoskopf B L, Feeny D, Furlong W, Burrows E, Rosenbaum P L, Hoult L
Department of Pediatrics, McMaster University and Children's Hospital at Hamilton Health Sciences Corporation, Ontario, Canada.
JAMA. 1999 Jun 2;281(21):1991-7. doi: 10.1001/jama.281.21.1991.
In neonatal intensive care, parents make important clinical management decisions in conjunction with health care professionals. Yet little information is available on whether preferences of health care professionals and parents for the resulting health outcomes differ.
To measure and compare preferences for selected health states from the perspectives of health care professionals (ie, neonatologists and neonatal nurses), parents of extremely low-birth-weight (ELBW) or normal birth-weight infants, and adolescents who were either ELBW or normal birth-weight infants.
Cross-sectional cohort study.
A total of 742 participants were recruited and interviewed between 1993 and 1995, including 100 neonatologists from hospitals throughout Canada; 103 neonatal nurses from 3 regional neonatal intensive care units; 264 adolescents (aged 12-16 years), including 140 who were ELBW infants and 124 sociodemographically matched term controls; and 275 parents of the recruited adolescents.
Preferences (utilities) for 4 to 5 hypothetical health states of children were obtained by direct interviews using the standard gamble method.
Overall, neonatologists and nurses had similar preferences for the 5 health states, and a similar proportion rated some health states as worse than death (59% of neonatologists and 68% of nurses; P=.20). Health care professionals rated the health states lower than did parents of ELBW and term infants (P<.001). Overall, 64% of health care professionals and 45% of parents rated 1 or more health states to be worse than death (P<.001). Differences in mean utility scores between health care professionals and parents and adolescent respondents were most pronounced for the 2 most severely disabled health states (P<.001).
When asked to rate the health-related quality of life for the hypothetical conditions of children, health care professionals tend to provide lower utility scores than do adolescents and their parents. These findings have implications for decision making in the neonatal intensive care unit.
在新生儿重症监护中，父母与医护人员共同做出重要的临床管理决策。然而，关于医护人员和父母对最终健康结果的偏好是否存在差异，目前几乎没有相关信息。
从医护人员（即新生儿科医生和新生儿护士）、极低出生体重（ELBW）或正常出生体重婴儿的父母以及曾是ELBW或正常出生体重婴儿的青少年的角度，测量并比较对选定健康状态的偏好。
横断面队列研究。
1993年至1995年期间共招募并采访了742名参与者，包括来自加拿大各地医院的100名新生儿科医生；来自3个地区新生儿重症监护病房的103名新生儿护士；264名青少年（12至16岁），其中包括140名ELBW婴儿和124名社会人口统计学匹配的足月儿对照；以及所招募青少年的275名父母。
通过使用标准博弈法进行直接访谈，获得对4至5种儿童假设健康状态的偏好（效用）。
总体而言，新生儿科医生和护士对这5种健康状态的偏好相似，并且有相似比例的人将某些健康状态评为比死亡更糟（59%的新生儿科医生和68%的护士；P = 0.20）。医护人员对健康状态的评分低于ELBW和足月儿的父母（P < 0.001）。总体而言，64%的医护人员和45%的父母将1种或更多健康状态评为比死亡更糟（P < 0.001）。医护人员与父母及青少年受访者之间平均效用得分的差异在2种最严重残疾的健康状态中最为明显（P < 0.001）。
当被要求对儿童假设状况的健康相关生活质量进行评分时，医护人员给出的效用得分往往低于青少年及其父母。这些发现对新生儿重症监护病房的决策具有启示意义。
