Hack M
Rainbow Babies & Children's Hospital, Division of Neonatology, Cleveland, Ohio 44106-6010, USA.
Pediatrics. 1999 Jan;103(1 Suppl E):319-28.
Measures of health status, functional abilities, and quality-of-life are being used increasingly to evaluate health care practice, and to measure outcomes from the patient's perspective. There is thus a need to reassess the use of growth and neurodevelopmental status that have traditionally been used as measures of outcome after neonatal intensive care. The quality of neonatal intensive care constitutes only one factor among many that determine the functional health and quality-of-life of survivors of neonatal intensive care. These include genetic disposition, intrauterine events, the effects of sociodemographic factors on the health and development of the child, and on the parents' assessment of their child's functioning. To obtain health status, functional and quality-of-life measures, parents need to act as proxy for the child during infancy and childhood. The parents' cultural, social, and educational background and the specific experience of the parent with children may influence their responses. Furthermore, their perspective may differ from that of the child. Measures that have been used or have the potential to measure health status, functioning, and quality-of-life include the National Health Interview Survey, the National Health Insurance Study, the Functional Status II, the Multi-Attribute Health System, the Functional Independence Measure for Children, the Vineland Adaptive Behavior Scales, the Adolescent Child Health and Illness Profile, and the Child Health Questionnaire for children, infants, and toddlers. Knowledge of the validity of the use of these measures among survivors of neonatal intensive care is, however, sparse. Studies have shown that the collection of a standard core of data from various national sources with specific criteria for defining severe disability at 2 years of age is feasible in Great Britain. However, questionnaires or available national databases provide global and epidemiologic information on outcomes rather than identifying the specific pathogenesis or rates of impairments. To determine the possible deleterious effects of new therapies, specific diseases or impairments will need to be identified rather than the global effect on functioning or health related quality-of-life. Examination of the proximal neonatal impairments that predispose to later disability, such as rates of periventricular hemorrhage or retinopathy of prematurity, are probably better measures for evaluating quality of neonatal care rather than distal impairments such as cerebral palsy, growth impairments, or reactive airway disease. The ultimate goal of neonatal intensive care is to provide survival without impairment. Objective measures of specific impairments and their residual disability are thus better measures of the quality of neonatal intensive care than subjective assessments of children and their families.
健康状况、功能能力和生活质量的衡量指标正越来越多地用于评估医疗保健实践，并从患者的角度衡量治疗结果。因此，有必要重新评估传统上用作新生儿重症监护后治疗结果衡量指标的生长和神经发育状况。新生儿重症监护的质量只是决定新生儿重症监护幸存者功能健康和生活质量的众多因素之一。这些因素包括遗传倾向、子宫内事件、社会人口统计学因素对儿童健康和发育的影响，以及对父母对其子女功能的评估的影响。为了获得健康状况、功能和生活质量的衡量指标，父母需要在婴儿期和儿童期充当孩子的代理人。父母的文化、社会和教育背景以及父母与孩子的具体经历可能会影响他们的回答。此外，他们的观点可能与孩子的不同。已使用或有可能衡量健康状况、功能和生活质量的指标包括国家健康访谈调查、国家医疗保险研究、功能状况II、多属性健康系统、儿童功能独立性测量、韦氏适应行为量表、青少年儿童健康与疾病概况，以及针对儿童、婴儿和幼儿的儿童健康问卷。然而，对于这些指标在新生儿重症监护幸存者中的有效性了解甚少。研究表明，在英国，从各种国家来源收集标准核心数据，并制定2岁时定义严重残疾的具体标准是可行的。然而，问卷或现有的国家数据库提供的是关于治疗结果的总体和流行病学信息，而不是确定具体的发病机制或损伤发生率。为了确定新疗法可能的有害影响，需要识别特定的疾病或损伤，而不是对功能或与健康相关的生活质量的总体影响。检查易导致后期残疾的近端新生儿损伤，如脑室周围出血或早产儿视网膜病变的发生率，可能是评估新生儿护理质量的更好指标，而不是像脑瘫、生长发育障碍或反应性气道疾病等远端损伤。新生儿重症监护的最终目标是提供无损伤的存活。因此，特定损伤及其残余残疾的客观指标比儿童及其家庭的主观评估更能衡量新生儿重症监护的质量。
