非恶性疾病的儿童造血干细胞移植（HSCT）的存活率持续增加。尽管照料者在这种高强度治疗中发挥关键作用，但对长期家长影响的了解仍然缺乏。本横断面研究使用家长苦恼温度计（DT-P）评估了2岁及以上儿童HSCT后患非恶性疾病的家长的苦恼和日常问题，并将结果与健康儿童的匹配荷兰家长和患有慢性疾病儿童的荷兰家长进行比较。 中位随访时间为5.3年（四分位距[IQR]：2.9-8.6）。患者的基础疾病为先天性免疫缺陷（N = 30），血红蛋白病（N = 13）和骨髓衰竭（N = 27）。儿童HSCT受者的母亲（N = 70）报告的总体苦恼水平与健康儿童的母亲相当，但在与育儿问题有关的苦恼方面更多，特别是管理孩子的情绪、讨论疾病后果和培养独立性。HSCT受者的父亲（N = 45）报告的总体苦恼水平较高，情感上的苦恼也更多，与健康儿童的父亲相比。 总体而言，HSCT受者的父母的苦恼和日常问题与患有慢性疾病的儿童家长相当。然而，在HSCT后长期，父母承担了情感和育儿上的负担，与健康儿童的父母相比，负担的类型在母亲和父亲之间有所不同。这些结果表明，在儿童HSCT后的长期随访期间，个体化的家长支持护理不应仅限于急性住院阶段，而应主动提供。© 2023 The Authors. Pediatric Blood & Cancer, Wiley Periodicals LLC出版。

Survival rates have continued to increase for pediatric hematopoietic stem cell transplantation (HSCT) for nonmalignant diseases. Despite the crucial role of caregivers in this high-intensity treatment, knowledge about long-term parental impact is lacking.This cross-sectional study assessed parental distress and everyday problems in parents of patients 2 years and older after pediatric HSCT for a nonmalignant disease using Distress Thermometer for Parents (DT-P), and compared outcomes to matched Dutch parents of healthy children and Dutch parents of children with a chronic condition (CC).Median follow-up was 5.3 years (interquartile range [IQR]: 2.9-8.6). Underlying diseases were inborn errors of immunity (N = 30), hemoglobinopathies (N = 13), and bone marrow failure (N = 27). Mothers of pediatric HSCT recipients (N = 70) reported comparable overall distress levels to mothers of healthy children, but experienced more distress related to parenting problems, specifically managing their child's emotions, discussing disease consequences, and fostering independence. Fathers of HSCT recipients (N = 45) reported higher overall distress levels and had more emotional distress compared to fathers of healthy children.Overall, parental distress and everyday problems of parents of HSCT recipients are comparable to those of parents of children with CC. However, there is ongoing parental burden, both emotional and in parenting, long-term after HSCT compared to parents of healthy children, and the type of burden differs between mothers and fathers. These results indicate that individualized parental supportive care should not remain restricted to the acute hospitalization phase, but also be actively offered during long-term follow-up after pediatric HSCT.© 2023 The Authors. Pediatric Blood & Cancer published by Wiley Periodicals LLC.