Cole Conrad R, Bucuvalas John C, Hornung Richard W, Krug Susan, Ryckman Frederick C, Atherton Harry, Alonso Maria P, Balistreri William F, Kotagal Uma
Pediatric Liver Care Center, Cincinnati Children's Hospital, Cincinnati, OH, USA.
Pediatr Transplant. 2004 Jun;8(3):222-7. doi: 10.1111/j.1399-3046.2004.00126.x.
Our primary goal was to assess health related quality of life (HRQOL) at transplantation and 1 yr after transplantation in pediatric liver transplant patients aged less than 5 years. We conducted a prospective longitudinal study of HRQOL in pediatric liver transplant recipients, aged less than 5 years to define the impact of liver transplantation on HRQOL and identify factors that predict HRQOL after transplantation. The infant toddler health status questionnaire (ITHQ) was completed at the time of listing for liver transplantation and at 6 and 12 months after liver transplantation. The primary outcome measures were the subscale scores that comprise ITHQ. The mean age (+/-s.e.m.) of the enrolled patients (n = 45) at transplantation was 1.4 (+/-1.2) yr. Thirty-eight (84%) of the enrolled patients completed the study. The highest mean baseline scores of 78.6 (+/-3.3) were for global mental health (GlobalMH). ITHQ subscale scores increased steadily after transplantation. The greatest increase was in the first 6 months after transplant. At 1 yr after transplantation, there were significant increases in all of the ITHQ subscale scores except for GlobalMH. ITHQ subscales were similar for patients who received LDLT compared with those who received cadaver donor liver transplantation (CDLT) at baseline and a year after transplant. Time elapsed as transplantation was a significant predictor of functional health in all of the models generated. Scores for general health (GH), global health (GGH), parental time-impact (PT) and parental time-emotion (PE) were higher for male children. Family cohesion (FC) improved with time elapsed since transplant and increased number of inpatient days. HRQOL improves after transplantation in all of our patients irrespective of the donor type. Functional health scores were higher in patients with normal serum bilirubin at 1 yr post-transplant. Assessment of HRQOL should be an integral part of care for liver transplant patients and their caregivers.
我们的主要目标是评估年龄小于5岁的小儿肝移植患者在移植时及移植后1年的健康相关生活质量（HRQOL）。我们对年龄小于5岁的小儿肝移植受者的HRQOL进行了一项前瞻性纵向研究，以确定肝移植对HRQOL的影响，并确定预测移植后HRQOL的因素。在肝移植登记时以及肝移植后6个月和12个月完成婴幼儿健康状况问卷（ITHQ）。主要结局指标是构成ITHQ的分量表得分。入组患者（n = 45）移植时的平均年龄（±标准误）为1.4（±1.2）岁。38名（84%）入组患者完成了研究。全球心理健康（GlobalMH）的平均基线得分最高，为78.6（±3.3）。ITHQ分量表得分在移植后稳步上升。移植后前6个月上升幅度最大。移植后1年，除GlobalMH外，所有ITHQ分量表得分均显著上升。接受活体肝移植（LDLT）的患者与接受尸体供肝移植（CDLT）的患者在基线和移植后1年时的ITHQ分量表相似。在所有生成的模型中，从登记到移植所经过的时间是功能健康的一个重要预测因素。男性儿童的一般健康（GH）、整体健康（GGH）、父母时间影响（PT）和父母时间情绪（PE）得分较高。家庭凝聚力（FC）随着移植后时间的推移和住院天数的增加而改善。无论供体类型如何，我们所有患者移植后的HRQOL均有所改善。移植后1年血清胆红素正常的患者功能健康得分更高。对HRQOL的评估应成为肝移植患者及其护理人员护理的一个组成部分。
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