Calaminus G, Weinspach S, Teske C, Göbel U
Department of Ped. Hematology and Oncology, University Children's Hospital, Düsseldorf.
Klin Padiatr. 2000 Jul-Aug;212(4):211-5. doi: 10.1055/s-2000-9679.
The assessment of Quality of Life (QoL) in childhood cancer survivors is a new field of research, which is important for a better understanding of how children with cancer feel and how treatment can be optimized. The purpose of our examination in a sample of patients treated in our institution was the evaluation of the questions: How do children with cancer reflect on their QoL in comparison to healthy children of the same age? Are there any significant differences in QoL between children with hematological disorders and children with solid tumors and if that is so, which domains are affected?
We used for the evaluation a pilotversion of a self-rating QoL questionnaire for children between 8 and 18 years (PEDQOL), who was developed for pediatric oncology. 49 children off treatment of whom 51% had leukemia/lymphoma and 49% had solid tumors compared to 62 healthy school children were examined.
The PEDQOL questionnaire was a good accepted measure among the examined children. The reliability scores of the pilotform for the evaluated domains were also satisfactory (Cronbach's-Alpha > 0.60). In general QoL was scored good by healthy as well as by ill children. In the group of children with leukemia/lymphoma impairment of QoL was more apparent than in children with solid tumors (domains autonomy, emotional functioning, cognition and familial interactions). Survivors of solid tumors reported less impairment of QoL which was mainly seen in physical functioning and body image.
In general QoL scored with the PEDQOL pilotquestionnaire was good for most of the childhood cancer survivors. Children with solid tumors show less impairment than children with leukemia/lymphoma. Therefore it could be suggested, that young age at diagnosis and the following longer period of being dependent on familial support, the isolation from peer groups and the longer way to become independent may be reflected by these results. To obtain reliable results how children with cancer express their QoL and what consequences illness, treatment and long term effects of therapy have on the childrens' QoL a multicenter prospective study is needed. This will be realized in the near future in a project on "Long term effects and quality of life in children with leukemia or medulloblastoma", which is supported by the "Kompetenznetz Pädiatrische Onkologie and Hämatologie".
儿童癌症幸存者的生活质量（QoL）评估是一个新的研究领域，对于更好地理解癌症患儿的感受以及如何优化治疗非常重要。我们对在本机构接受治疗的患者样本进行检查的目的是评估以下问题：与同龄健康儿童相比，癌症患儿如何看待他们的生活质量？血液系统疾病患儿和实体瘤患儿的生活质量是否存在显著差异？如果存在差异，哪些领域受到影响？
我们使用了一份针对8至18岁儿童的生活质量自评问卷（PEDQOL）的试点版本，该问卷是为儿科肿瘤学开发的。对49名已结束治疗的儿童进行了检查，其中51%患有白血病/淋巴瘤，49%患有实体瘤，并与62名健康学童进行了比较。
PEDQOL问卷在接受检查的儿童中得到了很好的认可。试点表格在评估领域的可靠性得分也令人满意（克朗巴哈系数>0.60）。总体而言，健康儿童和患病儿童的生活质量得分都较好。白血病/淋巴瘤患儿组的生活质量受损比实体瘤患儿组更明显（在自主性、情绪功能、认知和家庭互动等领域）。实体瘤幸存者报告的生活质量受损较少，主要体现在身体功能和身体形象方面。
总体而言，使用PEDQOL试点问卷评估的生活质量对大多数儿童癌症幸存者来说较好。实体瘤患儿的受损程度低于白血病/淋巴瘤患儿。因此可以推测，这些结果可能反映了诊断时年龄较小以及随后较长时间依赖家庭支持、与同龄人群体隔离以及实现独立所需的更长时间。为了获得关于癌症患儿如何表达他们的生活质量以及疾病、治疗和治疗的长期影响对儿童生活质量有何后果的可靠结果，需要进行一项多中心前瞻性研究。这将在不久的将来在一个由“儿童肿瘤学和血液学能力网络”支持的“白血病或髓母细胞瘤患儿的长期影响和生活质量”项目中实现。
