Fluchel Mark, Horsman John R, Furlong William, Castillo Luis, Alfonz Yasmine, Barr Ronald D
Children's Hospital of Philadelphia, University of Pennsylvania, Philadelphia, Pennsylvania, USA.
Pediatr Blood Cancer. 2008 Apr;50(4):838-43. doi: 10.1002/pbc.21299.
The incidence of cancer in children in Uruguay is similar to that in industrialized societies but the survival rate is half as great. This study assesses another important measure of treatment effectiveness: the health-related quality of life (HRQL) of survivors.
All new patients diagnosed in a 3-year period were eligible if free of disease for at least 2 years after therapy and at least 7 years of age at the time of study. A sample of convenient subjects for comparison was obtained from schools and clinics for well children. During a 7-month period, Spanish language interviewer-administered questionnaires were used to collect Health Utilities Index data from survivors and the comparison group (self-reports), and from proxies (parents, physicians, and teachers).
Of 113 eligible survivors, 95 (84%) participated together with 96 "control" subjects. Control subjects have a higher mean HRQL utility score than survivors (P < 0.001). The mean score for survivors of acute lymphoblastic leukemia (ALL): 0.72 (n = 49) is higher than the score for survivors of brain tumors: 0.60 (n = 20), as expected. Inter-rater agreement is highest between survivors and parents, and lowest between controls and physicians or teachers.
The burden of morbidity in survivors of childhood cancer in Uruguay is considerable and greater than that in a comparative group of healthy children. Survivors of ALL have better HRQL than survivors of brain tumors, mirroring experience elsewhere. The level of inter-rater agreement is related to the degree of familiarity of the pair-members of respondents with each other.
乌拉圭儿童癌症的发病率与工业化社会相似，但生存率仅为其一半。本研究评估了治疗效果的另一项重要指标：幸存者的健康相关生活质量（HRQL）。
所有在3年期间确诊的新患者，若治疗后至少2年无疾病且研究时至少7岁，则符合条件。从学校和健康儿童诊所获取了一组方便的对照样本。在7个月的时间里，使用西班牙语由访谈者管理的问卷，从幸存者和对照组（自我报告）以及代理人（父母、医生和教师）那里收集健康效用指数数据。
113名符合条件的幸存者中，95名（84%）参与了研究，同时还有96名“对照”对象。对照对象的平均HRQL效用得分高于幸存者（P < 0.001）。正如预期的那样，急性淋巴细胞白血病（ALL）幸存者的平均得分：0.72（n = 49）高于脑肿瘤幸存者的得分：0.60（n = 20）。幸存者与父母之间的评分者间一致性最高，而对照组与医生或教师之间的一致性最低。
乌拉圭儿童癌症幸存者的发病负担相当大，且高于一组健康儿童对照。ALL幸存者的HRQL比脑肿瘤幸存者更好，这与其他地方的情况相符。评分者间一致性水平与受访者配对成员之间的熟悉程度有关。
