Aix-Marseille Univ, EA 3279: CERESS-Health Service Research and Quality of Life Center, Marseille, France.
Department of Pediatric Hematology and Oncology, Timone Enfants Hospital and Aix-Marseille Univ, Marseille, France.
Pediatr Blood Cancer. 2020 Oct;67(10):e28419. doi: 10.1002/pbc.28419. Epub 2020 Aug 15.
Our objectives were to assess the quality of life (QoL) of parents of childhood leukemia survivors compared with population norms and to identify the determinants of parents' long-term QoL.
Parents of minors who had survived childhood leukemia participating in the French LEA cohort (Leucémie de l'Enfant et de l'Adolescent-French Childhood Cancer Survivor Study for Leukemia) were asked to complete the French version of the WHOQOL-BREF. Results were compared with age- and sex-matched values from a French reference population. Parents' and survivors' characteristics likely to be associated with QoL, long after the child's leukemia diagnosis, were explored using multivariate analysis.
We included 487 parents (mean age 42.9 ± 6.0 years, mean follow-up time from diagnosis 7.3 ± 3.3 years). Compared with the reference population, scores for physical health and social relationships for parents of childhood leukemia survivors were significantly lower (P < 0.001, effect size = 0.24 and P < 0.001, effect size = 0.29, respectively) contrary to scores for psychological health which were significantly higher (P < 0.001, effect size = 0.29). Even if health- and cancer-related characteristics were associated with parents' QoL in some dimensions, the only factor associated with each of the three dimensions (social relationships, physical health, and psychological) in the multivariate analysis was the parent's financial situation.
Long after leukemia diagnosis, the parents reported lower scores in the physical health and social relationship domains. Despite the difficulties of actually influencing socioeconomic characteristics, it is important to consider the social situation of each family in the long-term care of survivors and their families.
我们的目的是评估儿童白血病幸存者父母的生活质量（QoL）与人群正常值相比，并确定父母长期 QoL 的决定因素。
参与法国 LEA 队列（法国儿童癌症幸存者白血病研究-儿童白血病和青少年白血病）的未成年白血病幸存者的父母被要求完成 WHOQOL-BREF 的法语版本。结果与来自法国参考人群的年龄和性别匹配值进行比较。使用多变量分析探讨了可能与儿童白血病诊断后很长时间的 QoL 相关的父母和幸存者特征。
我们纳入了 487 名父母（平均年龄 42.9 ± 6.0 岁，从诊断到随访的平均时间为 7.3 ± 3.3 年）。与参考人群相比，儿童白血病幸存者父母的身体健康和社会关系评分明显较低（P < 0.001，效应大小= 0.24 和 P < 0.001，效应大小= 0.29，分别），而心理健康评分明显较高（P < 0.001，效应大小= 0.29）。即使健康和癌症相关特征在某些维度上与父母的 QoL 相关，但在多变量分析中，唯一与三个维度（社会关系、身体健康和心理）相关的因素是父母的财务状况。
在白血病诊断后很长一段时间内，父母报告的身体健康和社会关系领域得分较低。尽管实际上难以影响社会经济特征，但在长期照顾幸存者及其家庭时，考虑每个家庭的社会状况非常重要。
