Juniper E F
Department of Clinical Epidemiology and Biostatistics, McMaster University Faculty of Health Sciences, Hamilton, Ontario, Canada.
Pediatr Pulmonol Suppl. 1997 Sep;15:17-21.
Many pediatricians now recognize the importance of incorporating an assessment of health-related quality of life (HRQL) into their clinical studies. Conventional clinical measures provide valuable information about the status of the affected organ system but they rarely capture the functional impairments (physical, emotional, and social) that are important to the patients in their everyday lives. To obtain a complete picture of a child's health status, both the conventional clinical indices and the child's HRQL have to be measured. Parents do not perceive accurately their children's HRQL, hence it is necessary to obtain the information directly from each child. Children with asthma are distressed by the symptoms (shortness of breath, wheezing, and cough), and they are limited in their day-to-day activities (sports, school, work, and playing with pets). In addition, children are often upset and frightened by asthma attacks, and express anger (younger children) and frustration (older children) because they have asthma. They frequently feel different from their friends and get frustrated that they cannot participate in activities. Disease-specific quality of life questionnairs for children with asthma have been developed. These questionnaires have good measurement properties and validity, and can be used both in clinical trials and in clinical practice to assess the impact of asthma on a child's life. Because one of the aims of treatment is to ensure that the children benefit from treatment, an essential component of clinical assessment of these children should be the evaluation of health-related quality of life.
现在,许多儿科医生认识到将健康相关生活质量(HRQL)评估纳入其临床研究的重要性。传统的临床测量方法能提供有关受影响器官系统状况的有价值信息,但它们很少能捕捉到对患者日常生活很重要的功能损害(身体、情感和社交方面)。为全面了解儿童的健康状况,必须同时测量传统的临床指标和儿童的HRQL。父母不能准确感知其子女的HRQL,因此有必要直接从每个孩子那里获取信息。哮喘患儿会因症状(呼吸急促、喘息和咳嗽)而痛苦,他们的日常活动(运动、上学、工作以及与宠物玩耍)也受到限制。此外,儿童常常因哮喘发作而心烦和恐惧,并因患有哮喘而表现出愤怒(年幼孩子)和沮丧(年长孩子)。他们经常觉得自己与朋友不同,并因无法参与活动而感到沮丧。针对哮喘患儿的疾病特异性生活质量问卷已经开发出来。这些问卷具有良好的测量特性和效度,可用于临床试验和临床实践,以评估哮喘对儿童生活的影响。由于治疗的目标之一是确保儿童从治疗中受益,对这些儿童进行临床评估的一个重要组成部分应该是对健康相关生活质量的评估。