儿科癌症患者及其父母在急性治疗和随访期间的疾病认知、进展恐惧和健康相关生活质量：一项横断面研究。
Illness perceptions, fear of progression and health-related quality of life during acute treatment and follow-up care in paediatric cancer patients and their parents: a cross-sectional study.
机构信息
Department of Psychiatry and Psychotherapy, Faculty of Medicine of the Technische Universität Dresden, Fetscherstr. 74, 01307, Dresden, Germany.
Department of Paediatric Oncology, Haematology and Haemostaseology, Leipzig University, Leipzig, Germany.
出版信息
BMC Psychol. 2023 Feb 13;11(1):44. doi: 10.1186/s40359-023-01078-6.
BACKGROUND
This study examines the role of illness perceptions and fear of progression (FoP) in paediatric cancer patients and their parents for patient's health-related quality of life (HRQoL), controlling for sociodemographic and medical variables. 4-18-year-old patients in acute treatment or follow-up care and one parent were examined.
METHODS
N = 46 patient-parent dyads in acute treatment and n = 84 dyads in follow-up care completed measures on illness perceptions (Illness-Perceptions-Questionnaire for 12-18-year-old patients and parents or as age-adapted puppet interview for 4-11-year-old patients) and FoP (Fear-of-Progression-Questionnaire for 7-18-year-old patients and parents). Patients also completed the KINDL-R to measure HRQoL. Hierarchical multiple regression analyses were calculated.
RESULTS
In acute treatment, patient's perceptions of symptoms and cyclicity of their illness explained variation in their HRQoL in addition to sociodemographic and medical variables. In follow-up care, patient's FoP and parent's perception of consequences explained additional variation in patient's HRQoL. Overall, sociodemographic and medical variables explained less variation in HRQoL in follow-up care than in acute treatment.
CONCLUSIONS
Our results stress the importance of psychological factors for the well-being of paediatric cancer patients, particularly in follow-up care, where sociodemographic and medical variables play a lesser role. We recommend screening for illness perceptions and FoP during and after acute treatment to support patients and parents. Furthermore, standardized interventions focussed on changing maladaptive illness perceptions should be developed and evaluated. As parents' perceptions, thoughts, and feelings may also play an important role for the well-being of the patients, interventions should be family-focussed and include parents. Trial registration The study has been pre-registered at the German Clinical Trials Register (registered 30/06/2020; DRKS00022034) and at the Open Science Framework ( https://osf.io/3uwrx ).
背景
本研究考察了疾病认知和对疾病进展的恐惧（FoP）在儿科癌症患者及其父母中的作用，以控制社会人口统计学和医学变量对患者健康相关生活质量（HRQoL）的影响。研究对象为处于急性治疗或随访护理中的 4-18 岁患者和一位家长。
方法
急性治疗中，n=46 例患者-家长配对和 n=84 例随访护理中的配对完成了疾病认知（12-18 岁患者和家长的疾病认知问卷或 4-11 岁患者的年龄适应型木偶访谈）和 FoP（7-18 岁患者和家长的 FoP 问卷）的测量。患者还完成了 KINDL-R 以测量 HRQoL。计算了分层多元回归分析。
结果
在急性治疗中，除了社会人口统计学和医学变量外，患者对自身症状和疾病周期性的认知还解释了其 HRQoL 的变化。在随访护理中，患者的 FoP 和家长对后果的认知解释了患者 HRQoL 的额外变化。总体而言，社会人口统计学和医学变量在随访护理中对 HRQoL 的变化解释程度低于急性治疗。
结论
我们的研究结果强调了心理因素对儿科癌症患者幸福感的重要性，特别是在随访护理中，社会人口统计学和医学变量的作用较小。我们建议在急性治疗期间和之后对疾病认知和 FoP 进行筛查，以支持患者和家长。此外，应制定和评估以改变不良疾病认知为重点的标准化干预措施。由于家长的认知、想法和感受也可能对患者的幸福感起着重要作用，干预措施应关注家庭，并包括家长。
试验注册
该研究已在德国临床试验注册处（2020 年 6 月 30 日注册；DRKS00022034）和开放科学框架（https://osf.io/3uwrx）进行了预先注册。
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