Amsterdam UMC, Emma Children's Hospital, Department of Pediatric Surgery, Amsterdam Gastroenterlogy and Metabolism and Amsterdam Reproduction and Development research institutes, University of Amsterdam, Meibergdreef 9, 1105 AZ, Amsterdam, The Netherlands.
Amsterdam UMC, Emma Children's Hospital, Department of Pediatrics, Follow Me program and Emma Neuroscience Group, Amsterdam Reproduction and Development research institutes, University of Amsterdam, Amsterdam, The Netherlands.
Orphanet J Rare Dis. 2022 Sep 11;17(1):353. doi: 10.1186/s13023-022-02502-7.
Congenital gastrointestinal malformation (CGIM) require neonatal surgical treatment and may lead to disease-specific sequelae, which have a potential psychological impact on parents. The aim of this study is to assess distress and symptoms of post-traumatic stress disorder (PTSD) in parents of patients with CGIM. In this cross-sectional study, seventy-nine parents (47 mothers and 32 fathers) of 53 patients with CGIM completed the Distress Thermometer for Parents (DT-P) and the Self Rating Scale for Posttraumatic Stress Disorders (SRS-PTSD) as part of the multidisciplinary follow-up of their children (aged 5-35 months). Group differences were tested between parents and representative Dutch reference groups with regard to rates of (clinical) distress and PTSD, and severity of overall distress and PTSD, for mothers and fathers separately. Mixed model regression models were used to study factors associated with the risk of (clinical) distress, PTSD and with severity of symptoms of PTSD (intrusion, avoidance and hyperarousal).
Prevalence of clinical distress was comparable to reference groups for mothers (46%) and fathers (34%). There was no difference in severity of overall distress between both mothers as well as fathers and reference groups. Prevalence of PTSD was significantly higher in mothers (23%) compared to the reference group (5.3%) (OR = 5.51, p < 0.001), not in fathers (6.3% vs 2.2.%). Symptoms of intrusion were commonly reported by all the parents (75%). Longer total length of child's hospital stay was associated with more severe symptoms of intrusion, avoidance and hyperarousal. Child's length of follow-up was negatively associated with severity of intrusion.
Having a child with CGIM has a huge impact on parents, demonstrated by a higher prevalence of PTSD in mothers, but not fathers, compared to parents in the general population. Monitoring of symptoms of PTSD of parents in follow-up is necessary.
先天性胃肠道畸形（CGIM）需要新生儿手术治疗，并可能导致特定于疾病的后遗症，这对父母有潜在的心理影响。本研究旨在评估 CGIM 患儿父母的痛苦和创伤后应激障碍（PTSD）症状。在这项横断面研究中，53 例 CGIM 患儿的 79 名父母（47 名母亲和 32 名父亲）完成了父母痛苦温度计（DT-P）和创伤后应激障碍自我评定量表（SRS-PTSD），作为其子女多学科随访的一部分（年龄 5-35 个月）。分别对母亲和父亲的父母组与荷兰代表性参考组之间的（临床）痛苦和 PTSD 发生率以及总体痛苦和 PTSD 严重程度进行了组间差异检验。使用混合模型回归模型研究与（临床）痛苦、PTSD 风险以及 PTSD 症状严重程度（侵入、回避和警觉性增高）相关的因素。
母亲（46%）和父亲（34%）的临床痛苦发生率与参考组相当。母亲和父亲的总体痛苦严重程度与参考组无差异。母亲 PTSD 的患病率（23%）明显高于参考组（5.3%）（OR=5.51，p<0.001），但父亲（6.3%vs2.2%）则不然。所有父母均常报告有侵入症状（75%）。儿童住院总时长与更严重的侵入、回避和警觉性增高症状相关。儿童随访时长与侵入症状严重程度呈负相关。
CGIM 患儿对父母有巨大影响，与一般人群中的父母相比，母亲 PTSD 的患病率较高，但父亲没有。在随访中监测父母 PTSD 症状是必要的。
