Buder Kathrin, Werner Helene, Landolt Markus A, Neuhaus Thomas J, Laube Guido F, Spartà Giuseppina
Pediatric Nephrology Unit, University Children's Hospital Zurich, Steinwiesstrasse 75, 8032, Zurich, Switzerland.
Department of Psychosomatics and Psychiatry, University Children's Hospital Zurich, Steinwiesstrasse 75, 8032, Zurich, Switzerland.
Pediatr Nephrol. 2016 Jun;31(6):923-32. doi: 10.1007/s00467-015-3294-0. Epub 2015 Dec 23.
Little is known about health-related quality of life (HRQoL) and mental health of parents having children with a history of hemolytic uremic syndrome (HUS).
This study included 63 mothers and 58 fathers of a cohort of 63 HUS-affected children. At assessment, the mean time since a child experienced an acute episode of HUS was 6.4 years. Parental HRQoL, mental health and posttraumatic stress disorder (PTSD) were assessed with standardized self-report questionnaires. Medical data were extracted from patients' hospital records.
The HRQoL and mental health of both the mothers and fathers were not impaired compared to normative data. However, a shorter time since a child's acute HUS episode was a significant predictor of lower HRQoL among the mothers, while no such effect was found among the fathers. Two fathers (3%), but no mothers, met the criteria for a diagnosis of HUS-related full PTSD; one father (2%) and four mothers (6%) met the criteria for a diagnosis of HUS-related partial PTSD.
Our study shows that most parents of our study sample were doing well in terms of HRQoL and mental health, although a small number met the criteria for full or partial PTSD diagnosis due to their child's HUS. We therefore recommend that healthcare providers pay special attention to parents regarding PTSD symptoms during the clinical follow-up of a HUS-affected child since some parents may benefit from psychological support.
对于有溶血尿毒综合征（HUS）病史孩子的父母，人们对其健康相关生活质量（HRQoL）和心理健康了解甚少。
本研究纳入了63名患有HUS儿童队列中的63名母亲和58名父亲。在评估时，自孩子经历HUS急性发作以来的平均时间为6.4年。使用标准化的自我报告问卷评估父母的HRQoL、心理健康和创伤后应激障碍（PTSD）。从患者的医院记录中提取医疗数据。
与标准数据相比，母亲和父亲的HRQoL和心理健康均未受损。然而，孩子急性HUS发作后的时间较短是母亲中HRQoL较低的一个重要预测因素，而在父亲中未发现这种影响。两名父亲（3%）符合HUS相关完全PTSD的诊断标准，但母亲中无人符合；一名父亲（2%）和四名母亲（6%）符合HUS相关部分PTSD的诊断标准。
我们的研究表明，尽管少数父母因孩子的HUS符合完全或部分PTSD诊断标准，但我们研究样本中的大多数父母在HRQoL和心理健康方面表现良好。因此，我们建议医疗保健提供者在对受HUS影响的儿童进行临床随访期间，特别关注父母的PTSD症状，因为一些父母可能会从心理支持中受益。
