Spijkerboer A W, Utens E M W J, De Koning W B, Bogers A J J C, Helbing W A, Verhulst F C
Department of Child & Adolescent Psychiatry, Erasmus Medical Centre, Sophia Children's Hospital, 3000 CB, Rotterdam, The Netherlands.
Qual Life Res. 2006 May;15(4):663-73. doi: 10.1007/s11136-005-3692-z.
Since the 1980s treatment techniques for congenital heart disease (ConHD) have gradually evolved. Therefore, actual information on the outcomes, including quality of life is required. Health-related quality of life was assessed long-term in four diagnostic groups of children, who underwent invasive treatment for ConHD between 1990 and 1995. The scores on the TNO-AZL Child Quality of Life Questionnaire (TACQOL) of both children with ConHD and their parents were compared with those of a same-aged reference group. The total sample of ConHD children (n = 113, 8-15 years old) obtained significantly lower mean scores on motor functioning, cognitive functioning, and positive emotional functioning than reference peers, reflecting an experience of poorer functioning. ConHD children, aged 8-11 years, obtained lower mean scores on 5 of the 7 TACQOL scales than reference peers. They also had a lower score on positive emotional functioning than 12- to 15-year-old ConHD children. The total sample of ConHD children obtained lower outcomes compared to their parents on 4 of the 7 TACQOL scales. No significant differences were found in health-related quality of life between ConHD boys and girls, neither between different diagnostic groups. Overall, this sample of recently treated ConHD children showed a worse health-related quality of life compared to reference groups. These findings deserve further attention.
自20世纪80年代以来，先天性心脏病（ConHD）的治疗技术逐渐发展。因此，需要有关包括生活质量在内的治疗结果的实际信息。对1990年至1995年间接受ConHD侵入性治疗的四个诊断组儿童的健康相关生活质量进行了长期评估。将ConHD儿童及其父母在TNO-AZL儿童生活质量问卷（TACQOL）上的得分与同龄参考组的得分进行了比较。ConHD儿童总样本（n = 113，8至15岁）在运动功能、认知功能和积极情绪功能方面的平均得分明显低于参考同龄人，反映出功能较差的体验。8至11岁的ConHD儿童在TACQOL的7个量表中的5个量表上的平均得分低于参考同龄人。他们在积极情绪功能方面的得分也低于12至15岁的ConHD儿童。ConHD儿童总样本在TACQOL的7个量表中的4个量表上的得分低于其父母。ConHD男孩和女孩之间以及不同诊断组之间在健康相关生活质量方面未发现显著差异。总体而言，与参考组相比，这个最近接受治疗的ConHD儿童样本的健康相关生活质量较差。这些发现值得进一步关注。
