Current situation and influencing factors of disease uncertainty in parents of children with Sturge‒Weber syndrome: a retrospective study

BMC Pediatrics

Research

Shanshan Xiong¹  Hong Ji¹  Na Du¹  Changjuan Zeng²  Lulu Huang³  Yue Wu³  Wenyi Guo³ 

[1] Department of Nursing, Ninth People’s Hospital, Shanghai Jiao Tong University School of Medicine, 200011, Shanghai, China;Department of Ophthalmology, Ninth People’s Hospital, Shanghai Jiao Tong University School of Medicine, 200011, Shanghai, China;Shanghai Key Laboratory of Orbital Diseases and Ocular Oncology, 200011, Shanghai, China;Department of Nursing, Ninth People’s Hospital, Shanghai Jiao Tong University School of Medicine, 200011, Shanghai, China;Department of Ophthalmology, Ninth People’s Hospital, Shanghai Jiao Tong University School of Medicine, 200011, Shanghai, China;Shanghai Key Laboratory of Orbital Diseases and Ocular Oncology, 200011, Shanghai, China;Shanghai JiaoTong University School of Nursing, 200025, Shanghai, China;Department of Ophthalmology, Ninth People’s Hospital, Shanghai Jiao Tong University School of Medicine, 200011, Shanghai, China;Shanghai Key Laboratory of Orbital Diseases and Ocular Oncology, 200011, Shanghai, China;

关键词: Sturge‒Weber syndrome;    Parents;    Disease uncertainty;    Present situation;    Influence factor;   

DOI  :  10.1186/s12887-023-03857-x

 received in 2022-04-30, accepted in 2023-01-19,  发布年份 2023

来源: Springer

【 摘 要 】

BackgroundSturge 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.MethodsA 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).ResultsThe 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).ConclusionsParents 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.

【 授权许可】

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© The Author(s) 2023