ObjectiveIn paediatric oncology, little is known about trajectories of illness perceptions and their longitudinal associations with health‐related quality of life (HRQoL). Therefore, the aim of this study was to investigate changes in illness perceptions in children and parents over a one‐year‐period and to investigate predictive value of child's and parent's illness perceptions during acute treatment for child's HRQoL 1 year later.MethodsN = 65 child‐parent‐dyads participated in a longitudinal study (retention rate: 80.2%). Children were 4–18 years of age and underwent acute cancer treatment at baseline. Children and parents reported on their own illness perceptions (Illness‐Perception‐Questionnaire‐Revised), as well as on the child's HRQoL (KINDL‐R) at baseline and one‐year‐follow‐up. Paired‐samples t‐tests were calculated to investigate changes over time. A hierarchical multiple regression analysis was performed to investigate predictive value of child's and parent's illness perceptions for child's HRQoL.ResultsChild's HRQoL t(63) = −6.73, p < 0.001, their perceptions of coherence (i.e. understanding; t(54) = −2.36, p = 0.022) and consequences of their illness (t(54) = 2.86, p = 0.006), and parent's perception of cyclical trajectory (t(61) = 2.06, p = 0.044) improved from baseline to 1‐year‐follow‐up. All other illness perceptions remained stable. Exploratory post‐hoc analyses showed differences in the pattern of change in age‐, gender‐, and diagnosis‐specific subgroups. After controlling for baseline levels of HRQoL, child's perceptions of symptoms and consequences were independent predictors of their HRQoL 1 year later (R2 = 0.396, F(2,52) = 10.782, p < 0.001), whereas no parent's illness perceptions added predictive value.ConclusionIn paediatrics, child's and parent's illness perceptions should be assessed. Our findings highlight the importance of illness perceptions as potential modifiable variables in interventions to improve child's HRQoL.

中文翻译：

---

儿科癌症患者及其父母的疾病认知轨迹及其与健康相关生活质量的关联：前瞻性纵向研究的结果

目的在儿科肿瘤学中，人们对疾病感知的轨迹及其与健康相关生活质量 (HRQoL) 的纵向关联知之甚少。因此，本研究的目的是调查一年内儿童和家长疾病认知的变化，并探讨儿童和家长在急性治疗期间儿童和家长疾病认知对一年后儿童 HRQoL 的预测价值。氮= 65 名子女-父母-二人参与了一项纵向研究（保留率：80.2%）。儿童年龄为 4-18 岁，基线时接受过急性癌症治疗。儿童和家长报告了他们自己的疾病认知（疾病感知问卷修订版），以及基线和一年随访时儿童的 HRQoL (KINDL-R)。配对样本t‐计算测试以调查随时间的变化。进行分层多元回归分析，以调查儿童和父母的疾病认知对儿童 HRQoL 的预测价值。结果儿童 HRQoLt(63) = −6.73,p< 0.001，他们对连贯性的看法（即理解；t(54) = -2.36,p= 0.022）及其疾病的后果（t(54) = 2.86,p= 0.006），以及父母对周期性轨迹的感知（t(61) = 2.06,p= 0.044）从基线到一年随访有所改善。所有其他疾病认知保持稳定。探索性事后分析显示年龄、性别和诊断特定亚组的变化模式存在差异。在控制 HRQoL 的基线水平后，儿童对症状和后果的感知是 1 年后其 HRQoL 的独立预测因素（右2= 0.396,F(2,52) = 10.782,p< 0.001），而父母的疾病认知没有增加预测价值。结论在儿科中，应该评估儿童和父母的疾病认知。我们的研究结果强调了疾病认知作为改善儿童 HRQoL 干预措施中潜在可修改变量的重要性。