Annett Robert D, Bender Bruce G, DuHamel Thomas R, Lapidus Jodi
Department of Pediatrics, University of New Mexico Health Sciences Center, Albuquerque, New Mexico 87131-5311, USA.
J Asthma. 2003;40(5):577-87. doi: 10.1081/jas-120019030.
Children and parents often differ in their perceptions of a complex disease such as asthma. This ancillary study of children with mild to moderate asthma that was conducted at four of the eight clinics in the Childhood Asthma Management Program had two aims: (1) to relate quality of life to asthma symptoms, sociodemographic characteristics, child psychosocial adjustment and family social support and (2) to relate agreement between child- and parent-reported quality of life to child age. For this study participants completed the Caregiver's Pediatric Asthma Quality of Life Questionnaire (C-PAQLQ), Pediatric Asthma Quality of Life Questionnaire, and a battery of psychosocial health outcomes questionnaires at the 12-month follow-up. The average asthma symptom score from diary cards for the 2 weeks before the visit was also collected. Parent-reported family burden was the strongest correlate of C-PAQLQ scores. Although the average asthma symptom score was not associated with parent-reported quality of life, the study had low power to detect a relationship because of the few episodes of asthma reported during the assessment period. The correlation between child and parent reported quality of life improved with increasing age of the child, suggesting increased child-parent agreement about quality of life outcomes was associated with increasing age of the child. Family characteristics, such as degree of cohesion among family members, are not associated with quality of life ratings.
儿童和家长对哮喘等复杂疾病的认知往往存在差异。这项在儿童哮喘管理项目八个诊所中的四个诊所开展的针对轻度至中度哮喘儿童的辅助研究有两个目标：（1）将生活质量与哮喘症状、社会人口学特征、儿童心理社会适应情况及家庭社会支持联系起来；（2）将儿童和家长报告的生活质量之间的一致性与儿童年龄联系起来。在这项研究中，参与者在12个月随访时完成了照顾者儿童哮喘生活质量问卷（C-PAQLQ）、儿童哮喘生活质量问卷以及一系列心理社会健康结果问卷。还收集了就诊前2周日记卡上的平均哮喘症状评分。家长报告的家庭负担是与C-PAQLQ评分相关性最强的因素。虽然平均哮喘症状评分与家长报告的生活质量无关，但由于评估期间报告的哮喘发作次数较少，该研究检测两者关系的效能较低。儿童和家长报告的生活质量之间的相关性随着儿童年龄的增长而提高，这表明儿童与家长在生活质量结果方面的一致性增加与儿童年龄增长有关。家庭特征，如家庭成员之间的凝聚力程度，与生活质量评分无关。
