Sheffler Lindsey C, Hanley Cheryl, Bagley Anita, Molitor Fred, James Michelle A
Department of Orthopaedic Surgery, University of California, Davis, School of Medicine, Sacramento, CA 95817, USA.
J Bone Joint Surg Am. 2009 Dec;91(12):2852-9. doi: 10.2106/JBJS.H.01108.
The agreement between children's self-reports and parent proxy-reports has not been established for function and quality-of-life measures for children with musculoskeletal diagnoses, including unilateral congenital below-the-elbow deficiency. Factors influencing parent-child agreement in this population have yet to be determined.
Ten hospitals administered the Pediatric Outcomes Data Collection Instrument (PODCI) and the Pediatric Quality of Life Inventory (PedsQL) prospectively to children and adolescents with a unilateral congenital below-the-elbow deficiency in order to assess their function and quality of life. Two-thirds of the subjects wore a prosthesis. These children's and adolescents' self-reports were compared with their parents' proxy-reports for the PODCI (n = 179) and the PedsQL (n = 364).
Parents underestimated their children's/adolescents' self-report scores for the upper extremity physical function domain of the PODCI (p < 0.001) and overestimated the scores for comfort in the pain/comfort domain of the PODCI (p < 0.05). Parents also reported a lower social functioning score on the PedsQL than did the children and adolescents (p < 0.001). Greater agreement with regard to the social functioning domain of the PedsQL was observed between parents and children than between parents and adolescents (p < 0.05) and between parents and subjects who did not wear a prosthesis than between parents and subjects who wore a prosthesis (p < 0.01).
Although the absolute differences are small, children with a unilateral congenital below-the-elbow deficiency report better upper-extremity function and quality of life than their parents perceive, but they may also be experiencing more pain. Factors influencing parent-child agreement on measures of quality of life include age and use of a prosthesis. Parents' reports of function may provide a helpful counterbalance to children's and adolescents' reports, but because quality of life is subjective by nature, the child's or adolescent's report is the gold standard. As a result of variability in agreement, PODCI and PedsQL parent reports cannot be considered true proxies for the self-reports of children or adolescents with unilateral congenital below-the-elbow deficiency or, possibly, of those with other musculoskeletal diagnoses.
对于患有肌肉骨骼疾病（包括单侧先天性肘下缺失）的儿童，其自我报告与家长代理报告之间在功能和生活质量测量方面的一致性尚未确立。影响该人群亲子报告一致性的因素尚未确定。
十家医院对患有单侧先天性肘下缺失的儿童和青少年前瞻性地使用儿科结果数据收集工具（PODCI）和儿童生活质量量表（PedsQL），以评估他们的功能和生活质量。三分之二的受试者佩戴了假肢。将这些儿童和青少年的自我报告与他们父母对PODCI（n = 179）和PedsQL（n = 364）的代理报告进行比较。
家长低估了他们孩子/青少年在PODCI上肢身体功能领域的自我报告得分（p < 0.001），并高估了PODCI疼痛/舒适度领域的舒适度得分（p < 0.05）。家长在PedsQL上报告的社会功能得分也低于儿童和青少年（p < 0.001）。与家长和青少年之间相比（p < 0.05），以及与佩戴假肢的受试者家长相比，不佩戴假肢的受试者家长与孩子在PedsQL社会功能领域的一致性更高（p < 0.01）。
尽管绝对差异很小，但患有单侧先天性肘下缺失的儿童报告的上肢功能和生活质量比他们父母所感知的要好，但他们可能也经历了更多疼痛。影响亲子生活质量测量一致性的因素包括年龄和假肢的使用。家长的功能报告可能有助于平衡儿童和青少年的报告，但由于生活质量本质上是主观的，儿童或青少年的报告是金标准。由于一致性存在差异，PODCI和PedsQL家长报告不能被视为患有单侧先天性肘下缺失的儿童或青少年（可能也包括患有其他肌肉骨骼疾病的儿童或青少年）自我报告的真实替代。
