Britto Maria T, Kotagal Uma R, Chenier Thomas, Tsevat Joel, Atherton Harry D, Wilmott Robert W
Division of Adolescent Medicine, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio 45229-3039, USA.
Pediatr Pulmonol. 2004 Feb;37(2):165-71. doi: 10.1002/ppul.10436.
Our objective was to determine the magnitude and direction of differences between adolescents with cystic fibrosis (CF) and their parents' reports of the adolescents' health-related quality of life (HRQOL) as measured by the adolescent and parent versions of the Child Health Questionnaire (CHQ). Sixty-two adolescents (mean age, 13.7 years; 46% female; mean forced expired volume in 1 sec, 73%) completed the 87-item adolescent form, and their parents (79% mothers; 77% working full or part time) completed the 50-item parent form of the CHQ during a routine clinic visit. For each scale, ANOVA was used to determine pairwise differences between adolescent and parent scale scores. For scales in which a significant parent-adolescent difference existed, ANCOVA was used to determine disease and demographic factors independently associated with differences in scores. Finally, responses for each pair were compared only on similarly worded items within each scale. For the full CHQ scales, adolescents rated their HRQOL significantly better than did their parents with regard to General Health (mean difference, 12.4 points), Role Function/Physical (mean difference, 9.0 points), Behavior (mean difference, 4.8 points), and Physical Function (mean difference, 4.0 points). No demographic or health factor was associated consistently with differences in parent-adolescent scores. When only similarly worded items were compared, adolescents still tended to rate their HRQOL better, but the difference was significant only for General Health (P = 0.0005), where adolescents rated themselves less susceptible to illness and less worried about their health than their parents. In conclusion, optimal measurement of adolescent HRQOL will likely require determining both parent and adolescent perceptions of HRQOL.
我们的目标是确定患有囊性纤维化（CF）的青少年与其父母报告的青少年健康相关生活质量（HRQOL）之间差异的大小和方向，该差异通过儿童健康问卷（CHQ）的青少年版和父母版进行测量。62名青少年（平均年龄13.7岁；46%为女性；1秒用力呼气量平均为73%）完成了87项青少年版问卷，他们的父母（79%为母亲；77%全职或兼职工作）在常规门诊就诊时完成了50项父母版CHQ问卷。对于每个量表，采用方差分析来确定青少年和父母量表得分之间的成对差异。对于存在显著父母 - 青少年差异的量表，采用协方差分析来确定与得分差异独立相关的疾病和人口统计学因素。最后，仅在每个量表中措辞相似的项目上比较每对的回答。对于完整的CHQ量表，在总体健康（平均差异12.4分）、角色功能/身体（平均差异9.0分）、行为（平均差异4.8分）和身体功能（平均差异4.0分）方面，青少年对其HRQOL的评分显著高于其父母。没有人口统计学或健康因素与父母 - 青少年得分差异始终相关。当仅比较措辞相似的项目时，青少年仍倾向于对其HRQOL给出更高评分，但仅在总体健康方面差异显著（P = 0.0005），在这方面青少年认为自己比父母更不易患病且对健康的担忧更少。总之，青少年HRQOL的最佳测量可能需要同时确定父母和青少年对HRQOL的认知。
