Annett R D
Pediatric Pulmonary Center, University of New Mexico Health Sciences Center, Albuquerque, NM 87131-5311, USA.
J Allergy Clin Immunol. 2001 May;107(5 Suppl):S473-81. doi: 10.1067/mai.2001.114949.
Increasing interest has been directed to understanding health outcomes associated with pediatric disease processes, including asthma. Salient areas of interest to health outcomes research include the child's and parent's subjective experience with the disease, a concept most often identified as quality of life. Quality of life reports fit within a broader scope of outcome measures embodied in the concept of children's health status. This article provides a description for how a child's health status can be understood theoretically, from a research perspective and in clinical practice. Emphasis is directed to how information obtained from both the child and parent is critical to outcomes research and clinical practice. Unique methodologic problems in assessing child health outcomes such as the challenge of understanding how the child's changing cognitive development may have an impact on responses to outcome measures and the role of contextual variables such as family characteristics are discussed. A variety of subjective and objective outcome measures currently exist that may be used in research on children with asthma. Practical guidelines for implementing outcomes research for children with asthma are presented. Clinical researchers must use multiple outcome measures for assessing asthma characteristics, including psychosocial characteristics, which have an impact on adherence and treatment regimens.
人们越来越关注与儿科疾病过程相关的健康结果，包括哮喘。健康结果研究的主要关注领域包括儿童和家长对疾病的主观体验，这一概念通常被称为生活质量。生活质量报告属于儿童健康状况这一概念所包含的更广泛的结果测量范畴。本文从理论、研究角度和临床实践方面描述了如何理解儿童的健康状况。重点在于说明从儿童和家长那里获得的信息对于结果研究和临床实践至关重要。讨论了评估儿童健康结果时存在的独特方法学问题，比如理解儿童不断变化的认知发展如何影响对结果测量的反应所面临的挑战，以及诸如家庭特征等背景变量的作用。目前存在多种主观和客观的结果测量方法，可用于哮喘儿童的研究。本文还给出了针对哮喘儿童开展结果研究的实用指南。临床研究人员必须使用多种结果测量方法来评估哮喘特征，包括对依从性和治疗方案有影响的心理社会特征。
