Current situation and influencing factors of disease uncertainty in parents of children with Sturge‒Weber syndrome: a retrospective study.
Current situation and influencing factors of disease uncertainty in parents of children with Sturge‒Weber syndrome: a retrospective study.
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DOI：
10.1186/s12887-023-03857-x
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发表时间：
2023-02-07
期刊：
影响因子：
2.4
通讯作者：
中科院分区：
文献类型：
--
作者：
斯特奇·韦伯综合征（SWS）可导致面部、头部、躯干和身体其他部位广泛的毛细血管畸形，眼睛也可能遭受视神经损伤。继发性青光眼可导致失明，具有起病相对隐蔽、发病机制不明确的特点。 SWS继发性青光眼的治疗一直是困难的，且由于该病的特点，各种治疗方法对该类患者的长期疗效和安全性存在不确定性。共有105名SWS儿童家长完成了自行设计的一般信息问卷、广泛性焦虑问卷（GAD-7）、患者健康问卷（PHQ-2）、压力感知量表（PSS-4）、简单应对量表（SCSQ）和疾病不确定性量表（PPUS）。 SWS儿童家长的不确定性总分为79.07±13.24，项目平均分为2.82±0.47。多元线性回归分析显示，焦虑和简单应对是SWS患儿家长疾病不确定性的主要影响因素（P<0.05）。 SWS 儿童的父母表现出高度的疾病不确定性。医务人员应关注父母疾病不确定性的根源，并进行针对性干预，这对于减少父母疾病不确定性具有重要意义。
Sturge Weber syndrome (SWS), can cause extensive capillary malformations on the face, head, trunk, and other parts of the body, and the eyes can also suffer optic nerve injury. Secondary glaucoma can cause blindness, which has the characteristics of a relatively hidden onset and unclear pathogenesis. The treatment of SWS secondary glaucoma has always been difficult, and due to the characteristics of the disease, there is uncertainty about the long-term efficacy and safety of various treatment methods for such patients. A total of 105 parents of children with SWS completed a self-designed general information questionnaire, a generalized anxiety questionnaire (GAD-7), a patient health questionnaire (PHQ-2), a stress perception scale (PSS-4), a simple coping scale (SCSQ) and a disease-uncertainty scale (PPUS). The total uncertainty score of parents of children with SWS was 79.07 ± 13.24, and the average item score was 2.82 ± 0.47. Multiple linear regression analysis revealed that anxiety and simple coping were the main influencing factors of disease uncertainty among parents of children with SWS (P < 0.05). Parents of children with SWS exhibit a high level of disease uncertainty. Medical staff should pay attention to the source of parents' disease uncertainty and provide targeted interventions, which are of great importance in reducing parents' disease uncertainty.
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影响因子：
5
作者：
COHEN, S;KAMARCK, T;MERMELSTEIN, R
通讯作者：
MERMELSTEIN, R
DOI：
10.1016/j.pedn.2021.03.016
发表时间：
2021-03-31
影响因子：
2.4
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通讯作者：
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作者：
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影响因子：
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作者：
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通讯作者：
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