Psychosocial Functioning in Parents of MPS III Patients.
Psychosocial Functioning in Parents of MPS III Patients.
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DOI：
10.1007/8904_2018_119
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发表时间：
2019-01-01
期刊：
影响因子：
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通讯作者：
Haverman, Lotte
中科院分区：
文献类型：
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作者：
Conijn, Thirsa;Nijmeijer, Stephanie C M;Haverman, Lotte
背景：粘多糖病III型(MPS III或Sanfilippo综合征)是一种溶酶体储存性疾病，导致儿童和早期死亡时进行性神经认知能力下降。方法：34例荷兰MPS III患者的26位母亲和19位父亲完成了《医院焦虑和抑郁量表》(HADS)、《父母痛苦温度计》(DT-P)和《创伤后应激障碍自评量表》(SRS-PTSD)的调查。采用独立样本T检验和卡方检验评估MPS III患者的父母与对照组在焦虑和抑郁(HADS)、痛苦(DT-P)和创伤后应激(SRS-PTSD)方面的差异。结果：母亲符合临床相关焦虑(50%)和抑郁(34.6%)的频率高于参考母亲(p=0.001)。与参考父亲相比，父亲更符合临床相关抑郁症的标准(36.8%)(p=0.022)。与参考父母相比，MPS III患者的母亲(84.6%)和父亲(68.4%)中临床相关苦恼的发生率非常高(P
BACKGROUND: Mucopolysaccharidosis type III (MPS III or Sanfilippo syndrome) is a lysosomal storage disease resulting in progressive neurocognitive decline during childhood and early demise. Its diagnosis may have a great impact on parents, potentially leading to psychosocial problems such as anxiety, depression, parental distress, and posttraumatic stress.METHODS: Twenty-six mothers and 19 fathers of 34 Dutch MPS III patients completed the "Hospital Anxiety and Depression Scale" (HADS), the "Distress Thermometer for Parents" (DT-P), and the "Self-Rating Scale for Posttraumatic Stress Disorders" (SRS-PTSD). Independent-sample T-tests and chi-square tests were used to assess differences between parents of MPS III patients and reference groups regarding anxiety and depression (HADS), distress (DT-P), and posttraumatic stress (SRS-PTSD).RESULTS: Mothers met the criteria for clinically relevant anxiety (50%) and depression (34.6%) more frequently compared to reference mothers (p=0.001). Fathers more often met the criteria for clinically relevant depression (36.8%) compared to reference fathers (p=0.022). Clinically relevant distress was highly prevalent in mothers (84.6%) and fathers (68.4%) of MPS III patients compared to reference parents (p