Department of Medical Psychology, University Medical Center Hamburg-Eppendorf, Martinistraße 52, 20246, Hamburg, Germany.
Department of Pediatrics, Pediatric Hematology and Oncology, Klinik Bad Oexen, Oexen 27, 32549, Bad Oeynhausen, Germany.
Qual Life Res. 2023 Oct;32(10):2965-2974. doi: 10.1007/s11136-023-03436-8. Epub 2023 May 19.
Despite advances in cancer treatment, there is a prevalence of pediatric childhood cancer survivors still at risk of developing adverse disease and treatment outcomes, even after the end of treatment. The present study aimed to (1) explore how mothers and fathers assess the health-related quality of life (HRQoL) of their surviving child and (2) evaluate risk factors for poor parent-reported HRQoL in childhood cancer survivors about 2.5 years after diagnosis.
We assessed parent-reported HRQoL of 305 child and adolescent survivors < 18 years diagnosed with leukemia or tumors of central nervous system (CNS) with the KINDL-R questionnaire in a prospective observational study with a longitudinal mixed-methods design.
In agreement with our hypotheses, our results show that fathers rate their children's HRQoL total score as well as the condition-specific domains family (p = .013, d = 0.3), friends (p = .027, d = 0.27), and disease (p = .035, d = 0.26) higher than mothers about 2.5 years after diagnosis. Taking variance of inter-individual differences due to family affiliation into account, the mixed model regression revealed significant associations between the diagnosis of CNS tumors (p = .018, 95% CI [- 7.78, - 0.75]), an older age at diagnosis, (p = .011, 95% CI [- 0.96, - 0.12]), and non-participation in rehabilitation (p = .013, 95% CI [- 10.85, - 1.28]) with poor HRQoL in children more than 2 years after being diagnosed with cancer.
Based on the results, it is necessary for health care professionals to consider the differences in parental perceptions regarding children's aftercare after surviving childhood cancer. High risk patients for poor HRQoL should be detected early, and families should be offered support post-cancer diagnosis to protect survivors' HRQoL during aftercare. Further research should focus on characteristics of pediatric childhood cancer survivors and families with low participation in rehabilitation programs.
尽管癌症治疗取得了进展，但仍有相当一部分儿科癌症幸存者存在罹患不良疾病和治疗结局的风险，即使在治疗结束后也是如此。本研究旨在：（1）探讨父母如何评估存活患儿的健康相关生活质量（HRQoL）；（2）评估诊断后约 2.5 年儿童癌症幸存者中父母报告 HRQoL 较差的危险因素。
我们使用 KINDL-R 问卷对 305 名<18 岁的白血病或中枢神经系统（CNS）肿瘤患儿进行前瞻性观察研究，采用纵向混合方法设计。
与我们的假设一致，我们的结果表明，父亲对孩子的 HRQoL 总分以及特定领域的家庭（p=0.013，d=0.3）、朋友（p=0.027，d=0.27）和疾病（p=0.035，d=0.26）的评分均高于母亲，这是在诊断后约 2.5 年后得出的。考虑到家庭关系导致的个体间差异方差，混合模型回归显示 CNS 肿瘤诊断（p=0.018，95%CI[-7.78，-0.75]）、诊断时年龄较大（p=0.011，95%CI[-0.96，-0.12]）和未参加康复（p=0.013，95%CI[-10.85，-1.28]）与癌症诊断后 2 年以上儿童的 HRQoL 较差显著相关。
基于这些结果，医护人员有必要考虑父母对儿童癌症存活后护理的不同看法。应早期发现 HRQoL 较差的高危患者，并在癌症诊断后为家庭提供支持，以在后续护理中保护幸存者的 HRQoL。未来的研究应重点关注儿科癌症幸存者和低康复参与率家庭的特征。
