Osman L, Silverman M
Chest Clinic, City Hospital, Aberdeen, UK.
Eur Respir J Suppl. 1996 Apr;21:35s-41s.
In assessing therapeutic interventions in asthma we have become increasingly aware of the importance of measuring outcomes which relate to patient experience of illness and its impact on their lives. These patient oriented assessments are usually defined as "quality of life" measures. There are good reasons for wanting to measure the impact of disease on people with asthma. Quality of life is likely to be related to health behaviour, such as adherence to therapy and use of health resources. Quality of life may be a stronger predictor of these behaviours than objective symptoms. Thus, in evaluating health-related interventions, quality of life is an important dimension of outcome measurement. Adult measures are now frequently used but there has been less development of measures suitable for children. Important issues in measuring quality of life for children include the development of age-appropriate scales, measurement of the impact of illness on the whole family, and the relationship between child's report and proxy report. Recently developed asthma specific scales for children include the Child Asthma Questionnaire (CAQ), and the Paediatric Asthma Quality of Life Questionnaire (PAQLQ). The PAQLQ comprises a form directly assessing child quality of life and a form assessing paediatric care-givers (usually a parent). The impact of child asthma on the family as a whole may be particularly important not only for comparing benefits of different interventions, but also for predicting outcomes, such as medical help-seeking.
在评估哮喘的治疗干预措施时,我们越来越意识到衡量与患者疾病体验及其对生活影响相关的结果的重要性。这些以患者为导向的评估通常被定义为“生活质量”测量。有充分的理由想要衡量疾病对哮喘患者的影响。生活质量可能与健康行为有关,例如对治疗的依从性和医疗资源的使用。生活质量可能比客观症状更能预测这些行为。因此,在评估与健康相关的干预措施时,生活质量是结果测量的一个重要维度。成人测量方法现在经常被使用,但适合儿童的测量方法的开发较少。测量儿童生活质量的重要问题包括制定适合年龄的量表、测量疾病对整个家庭的影响以及儿童报告与代理报告之间的关系。最近开发的针对儿童的哮喘特异性量表包括儿童哮喘问卷(CAQ)和儿童哮喘生活质量问卷(PAQLQ)。PAQLQ包括一份直接评估儿童生活质量的表格和一份评估儿科护理人员(通常是父母)的表格。儿童哮喘对整个家庭的影响可能特别重要,这不仅有助于比较不同干预措施的益处,还有助于预测结果,如寻求医疗帮助。