Apajasalo M, Sintonen H, Holmberg C, Sinkkonen J, Aalberg V, Pihko H, Siimes M A, Kaitila I, Mäkelä A, Rantakari K, Anttila R, Rautonen J
Children's Hospital, University of Helsinki, Finland.
Qual Life Res. 1996 Apr;5(2):205-11. doi: 10.1007/BF00434742.
While data on the health-related quality of life (HRQOL) of adults are accumulating, very little is known about the HRQOL--and especially the perceived HRQOL--of children. In our study we introduced a 16-dimensional, generic self-assessment measure of HRQOL (16D) for early adolescents, and demonstrated its use with four populations of children aged 12-15: (1) 239 normal schoolchildren, (2) patients waiting for organ transplantation (n = 5), (3) patients with genetic skeletal dysplasias (n = 19), and (4) patients with epilepsy (n = 32). The HRQOL profiles of the patients differed significantly according to the diagnosis, giving support to its construct validity. The reliability of the measure was high: its repeatability coefficient was 91%. The quality of life ratings of the healthy boys and their parents differed on the dimensions of distress, vitality, speech, mental function, and discomfort and symptoms (p < 0.05). In addition, there were significant differences in the health-related valuations between the girls, boys and their parents. We conclude that the assessment of quality of life of adolescents should be based on data collected from the adolescents themselves. Further, the 16D is so far the only generic HRQOL measure designed specifically for this purpose. It is capable of differentiating the HRQOL of healthy adolescents as well as patients with various diagnoses. Our experience also indicates that it is easy to use, yet it seems comprehensive, reliable, and valid.
虽然关于成年人健康相关生活质量（HRQOL）的数据在不断积累，但对于儿童的HRQOL——尤其是感知到的HRQOL——却知之甚少。在我们的研究中，我们为青少年引入了一种16维度的通用HRQOL自我评估量表（16D），并展示了其在四类12至15岁儿童群体中的应用：（1）239名正常学童，（2）等待器官移植的患者（n = 5），（3）患有遗传性骨骼发育不良的患者（n = 19），以及（4）癫痫患者（n = 32）。根据诊断结果，患者的HRQOL概况存在显著差异，这支持了该量表的结构效度。该量表的可靠性很高：其重复性系数为91%。健康男孩及其父母在痛苦、活力、言语、心理功能以及不适和症状等维度上的生活质量评分存在差异（p < 0.05）。此外，女孩、男孩及其父母在健康相关评估方面也存在显著差异。我们得出结论，青少年生活质量的评估应基于从青少年自身收集的数据。此外，16D是迄今为止唯一专门为此目的设计的通用HRQOL量表。它能够区分健康青少年以及患有各种诊断疾病患者的HRQOL。我们的经验还表明，它易于使用，而且似乎全面、可靠且有效。
