Department of Clinical Haematology, Royal Children's Hospital, Australia.
Thromb Res. 2013 Jul;132(1):37-43. doi: 10.1016/j.thromres.2013.05.011. Epub 2013 May 30.
Management of oral anticoagulant therapy (OAT) in children is complex and frequent testing of the International Normalised Ratio (INR) is a significant burden. This study evaluates the impact of a home INR self-testing (home ST) program on the quality of life (QoL) of children and their families. The aim of the study was to determine if participation in a home ST program improves QoL for children requiring long-term OAT and their families.
Children aged eight to 18 years requiring long-term OAT and parents of children participated. Quantitative methods comprised three validated QoL questionnaires; the anticoagulation specific PAC QL©, the PedsQL™ and the PedsQL FIM™. Questionnaires were completed before commencing home ST and 6-12 months later. Qualitative methods consisted of open-ended questions which participants answered when completing the questionnaires for the second time. Results of INRs tested at home were collected.
Fifty-five parents and 35 children participated. The percentage of time the children's INRs were in their target therapeutic range was 71.3. Parents reported statistically significant improvements in QoL for themselves (mean increase 6.9), their family (mean increase 8.6) and their child (mean increase 11.1) following the commencement of home ST (difference p≤0.003 on all questionnaires). The children did not report a statically significant improvement in QoL.
Parents reported significant improvement for their child's QoL, their QoL and the families' function following commencement of home ST. Children did not report a significant improvement in their QoL, but clearly identified satisfaction with home ST.
儿童口服抗凝剂治疗(OAT)的管理较为复杂,频繁检测国际标准化比值(INR)会带来较大负担。本研究评估了家庭 INR 自我检测(home ST)方案对儿童及其家庭生活质量(QoL)的影响。本研究旨在确定参与家庭 ST 方案是否能改善长期接受 OAT 治疗的儿童及其家庭的生活质量。
八岁至十八岁需要长期接受 OAT 治疗的儿童及其家长参与了该研究。采用三种经过验证的 QoL 问卷进行定量分析:抗凝治疗特异性 PAC QL©、PedsQL™ 和 PedsQL FIM™。在开始家庭 ST 之前和 6-12 个月后完成问卷。定性方法包括参与者在第二次完成问卷时回答的开放性问题。收集在家中测试的 INR 结果。
55 名家长和 35 名儿童参与了该研究。儿童 INR 处于治疗目标范围内的时间百分比为 71.3%。父母报告称,自开始家庭 ST 以来,他们自身(平均增加 6.9)、家庭(平均增加 8.6)和孩子(平均增加 11.1)的 QoL 有显著改善(所有问卷差异 p≤0.003)。儿童的 QoL 无统计学显著改善。
父母报告称,在开始家庭 ST 后,他们孩子的 QoL、他们自身的 QoL 和家庭功能都有显著改善。儿童自身的 QoL 没有显著改善,但他们明确表示对家庭 ST 感到满意。