1Department of Neurological Surgery, Division of Pediatric Neurosurgery, and.
2Surgical Outcomes Center for Kids (SOCKs), Monroe Carell Jr. Children's Hospital, Vanderbilt University Medical Center, Nashville, Tennessee.
J Neurosurg Pediatr. 2020 Oct 9;27(1):16-22. doi: 10.3171/2020.6.PEDS20191. Print 2021 Jan 1.
Parent or guardian involvement is implicit in the care of pediatric patients with hydrocephalus. Some parents and guardians are more engaged than others. The relationship between socioeconomic status (SES), the level of parental concern about their child's hydrocephalus management and future, and overall health status has not been clearly delineated. In this study, the authors sought to clarify this connection using hydrocephalus patient-reported health outcomes.
This cross-sectional study included children with surgically managed hydrocephalus whose parent or guardian completed the validated Hydrocephalus Outcome Questionnaire (HOQ) and Hydrocephalus Concern Questionnaire for parents (HCQ-P) on a return visit to the pediatric neurosurgery clinic at Vanderbilt University Medical Center between 2016 and 2018. Patients were excluded if the questionnaires were not completed in full. The calculated Overall Health Score (OHS) was used to represent the child's global physical, emotional, cognitive, and social health. The HCQ-P was used to assess parental concern about their child. Type of insurance was a proxy for SES.
The HOQ and HCQ-P were administered and completed in full by 170 patient families. In the cohort, 91% of patients (n = 155) had shunt-treated hydrocephalus, and the remaining patients had undergone endoscopic third ventriculostomy. The mean (± SD) patient age was 12 ± 4 years. Half of the patients were male (n = 90, 53%), and most were Caucasian (n = 134, 79%). One in four patients lived in single-parent homes or with a designated guardian (n = 45, 26%). Public insurance and self-pay accounted for 38% of patients (n = 64), while the remaining 62% had private or military insurance. In general, parents with higher concern about their child's medical condition indicated that their son or daughter had a higher OHS (χ2 = 17.07, p < 0.001). Patients in families with a lower SES did not have different OHSs from those with a higher SES (χ2 = 3.53, p = 0.06). However, parents with a lower SES were more worried about management of their child's hydrocephalus and their child's future success (χ2 = 11.49, p < 0.001). In general, parents were not preoccupied with one particular aspect of their child's hydrocephalus management.
More engaged parents, regardless of their family's SES, reported a better OHS for their child. Parents with public or self-paid insurance were more likely to report higher concern about their child's hydrocephalus and future, but this was not associated with a difference in their child's current health status.
父母或监护人的参与是小儿脑积水患者治疗中隐含的内容。有些父母和监护人比其他人更投入。社会经济地位（SES）、父母对子女脑积水管理和未来的关注程度以及整体健康状况之间的关系尚未明确界定。在这项研究中，作者试图使用脑积水患者报告的健康结果来阐明这种联系。
本横断面研究纳入了在范德比尔特大学医学中心儿科神经外科诊所就诊时接受过手术治疗的脑积水患儿，其父母或监护人在 2016 年至 2018 年期间完成了经过验证的脑积水患者报告结局问卷（HOQ）和脑积水父母关注问卷（HCQ-P）。如果问卷未完整填写，则排除患者。使用总体健康评分（OHS）来代表儿童的整体身体、情感、认知和社会健康。HCQ-P 用于评估父母对子女的关注程度。保险类型是 SES 的代表。
HOQ 和 HCQ-P 由 170 名患者家庭完成并完整填写。在该队列中，91%的患者（n=155）患有分流治疗的脑积水，其余患者接受了内镜第三脑室造瘘术。患者的平均（±SD）年龄为 12±4 岁。一半的患者为男性（n=90，53%），大多数为白人（n=134，79%）。四分之一的患者生活在单亲家庭或有指定监护人（n=45，26%）。有 38%的患者（n=64）享受公共保险或自付保险，而其余 62%的患者拥有私人或军事保险。一般来说，对子女医疗状况关注程度较高的父母表示，他们的儿子或女儿的 OHS 更高（χ2=17.07，p<0.001）。SES 较低的家庭的患者与 SES 较高的患者的 OHS 没有差异（χ2=3.53，p=0.06）。然而，SES 较低的父母对子女脑积水的管理和子女未来的成功更加担忧（χ2=11.49，p<0.001）。总的来说，父母不会过分关注子女脑积水管理的某一方面。
无论家庭 SES 如何，更投入的父母都报告了子女更好的 OHS。拥有公共或自付保险的父母更有可能报告对子女脑积水和未来的更高关注，但这与子女当前健康状况的差异无关。
