Consideration of the use of health status, functional outcome, and quality-of-life to monitor neonatal intensive care practice.

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.